Yet Another Cycling Forum
General Category => The Knowledge => Health & Fitness => Topic started by: peliroja on 20 November, 2012, 02:04:25 am
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Woolly here from Peli's account!
I was sure that I had the perfect bike set-up: Mary Bars from On-One, racer stem, and Ergo grips.
This has worked perfectly for around a year before we took off on our world pootle. Yes, once in a while, on long rides, I got a slight numbness/tingle in the hands, which disappeared after a shake of the hands or little stop for a drink or a jelly bean.
I was fine on some of the roughest roads in the world and on very long and hard days in the saddle in South America. In the States I had the numbness/tingle more often and sometimes for more than once a day. This was on tarmac most of the time, sometime chip-seal but mostly smooth surfaces.
When we arrived in New Zealand almost as soon as we rolled out of the airport I had numb fingers. As we made our way up to Northland, I got numb fingers no matter how often I tried to move my grip or shake my hands. I always cover my brakes, three years as a cycling instructor will do that to you, I very rarely grip the bars.
As we cycled south of Auckland it started to become painful and the pain was moving from my fingers to my wrist and lower arms. It got so bad that I could feel it in my shoulder. I had a sharp pain in one, like a needle, and when I pressed the site of the pain it relieved the pain in my hands and wrists. The palm of my hands, especially the fleshy bit near the thumb, is very sore and at the end of the day the ulnar nerve is very tender, often with shooting pains up my lower arms.
I have played around with the Ergon grips and just got some new mitts but nothing has helped. I'm even trying out some Bontrager BuzzzKill dampers, the jury is still out on them. I did feel something change when going downhill at speed, more like the vibration you get when power drill is changing speed but very subtle.
It is now so bad that I wake up in the night with painful arms, elbows and shoulders. It feels like the painful part of pins and needles but without the pins and needles. The first hour in the morning I struggle to make a fist and my fingers feel very tender and stiff. After one day of rest my hands have started to shake for the first hour or so after waking up, and a few hours later there is still a touch of the shakes.
Last time we were in a country where we had to wear helmets we both had pain from the base of our skulls down the spine past the shoulder blades, with pain from going out to each shoulder. This time around it is the same and it is a great pleasure to take the lid off when we are having breaks or at the end of the day. When we have been on quieter roads I have taken the helmet off. This makes a slight difference in delaying the pain appearing in the hands, wrists and arms.
The helmet is really the only thing that's changed between cycling here and in the Americas, where I had no problems. The set-up of the bike is the same as I'm always careful to use plenty of markers to make sure they're put back together in the same way.
So, I'm not sure what could be causing me this intense pain. Simple overuse, even though we're not doing mega mileage? Carrying too much on the bike (even though our load is much lighter here in NZ compared to Patagonia?) Front tyre being a bit worn out (it's a Marathon Plus Tour and is showing signs of wear - I'd planned to replace it after NZ)? The helmet, gloves or even the road surface?
One solution I've been considering is to get a suspension fork that can take front racks on a 700c wheel. I know it will push me a bit higher up but perhaps that's what I need, though I've been very happy with set-up on the 58cm Surly for over four years now. I've also considered getting a 60cm frame since a few people have said it does look a wee bit small for me.
I know that taking painkillers would be an temporary option but I'm not really keen on masking pain, since that is how the body tells you something is wrong.
We are going to have nearly four days off the bikes now and if we cycle it will be short distances. When we're back on the bikes it will be on quiet roads or trails, so I won't wear the helmet, and with more rest days in between.
I can't post photos easily at the moment (the wonders of New Zealand's internet service), but there are plenty of photos of me riding at www.woollypigs.com/galleries if you want to check my position on the bike.
In the meantime, what does the yacf panel think could be the problem here? Your thoughts, ideas, advice, and jokes at my expense are welcome!
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Sounds quite nasty, have you seen a good physio? I get ulnar nerve related numbness using flat bars on long rides, don't get the problem at all with compact drop bars.
I've got an old neck injury and find neck exercises/pilates stop it flaring up (like in this (http://www.youtube.com/watch?v=S9JfziYh3PQ) YouTube vid).
Have you tried butterfly bars or drops? I guess butterfly bars would be easiest to try, they do give a short and long reach position that might help.
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It's unlikely to be anything that's changed, but rather an over-use injury. The most likely culprit is a postural issue, resulting in pressure being put where it shouldn't. Although the Mary bars have considerable sweep, they are still essentially a flat bar and so ergonomically less than ideal. Their shape generally precludes the use of bar-ends and they provide only one good hand position. Swept bars present a complex fitting challenge, as it is difficult to provide a truly neutral wrist position.
To rule out some obvious possibilities, a few questions:
How much do you, your bike and luggage weigh?
What size tyres do you have fitted, and what pressure do you run them at?
How tall are you and what is your inseam measurement?
What is the drop from your saddle to handlebars?
Have you had any prior issues with or injuries to your hands or arms?
When experiencing the symptoms you describe, are you able to make an "OK" sign with your forefinger and thumb?
Where does the numbness and tingling start? Is it particularly strong in certain fingers?
Were you not in the middle of a major trip, I would tell you to immediately stop riding and consult a specialist. Given that you're halfway around the world, I would advise you at least to change your handlebars - practically anything would be an improvement, simply by changing your position on the bike. The obvious suggestion would be butterfly bars, which provide at least four good hand positions. These will allow you to use your existing stem, levers and shifters. Ideally I would recommend fitting clip-on aero bars of the ski-bend type, positioned high, wide and tilted up. These would completely alleviate the stresses on your wrists and forearms and hopefully allow you to continue on your trip unimpeded - although unusual, such an arrangement is the choice of many ultradistance riders.
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Without the slightest mefical background it sounds like something is either worn or inflamed and a nerve is trapped somewhere, I would think taking anti-inflamatories a la VIt-I will help, although then you need to be careful not to do more damage. ^^^ wot everyone else said, too, and hope you are feeling better soon <waves>
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has your saddle angle changed? If the nose has slipped down even a little bit it might have put more weight forwards onto your hands.
I never got on with mary bars on my mtb, something about the swept-back angle meant i couldnt get comfy, have you tried a normal (straighter) riser bar? Butterfly bars are a good idea too, even though they are ugly...
good luck sorting it.
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Doesn't need to be a change in posture, but over-use, like uphill said.
Inflammation on tendon sheaths where they pass through the carpal tunnel area would cause this.
Rest, gentle wrist rotation (I said *gentle*!). Gently 'spread' the base of one hand (as it turns to the wrist) with the other hand.
Neurofen to reduce inflammation.
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Straight/riser/Mary bars (i.e. those with just handgrips at the end) don't offer many alternative hand positions, so the strain can simply be overuse in one way. Adding the right bar ends can help, but I'm not really sure what (if anything) would work with a Mary.
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the only thing i can suggest is to change position on a bike so there's less pressure on your hands. normally, arms/hands should be gently touching the handlebars, not bearing considerable weight until they get numb. strong core muscles can do wonders to alleviate numb hand issue, but it's not a quick fix that you need now..
if possible, i'd see a doctor/physio as it sounds pretty serious now.
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That sounds like good advice. Anti-inflammatories will probably help in the meantime. IANAD.
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I googled Mary bars and found this photo which shows a possible way of getting a variety of hand positions.
(http://img301.imageshack.us/img301/1961/p10100111qw.jpg)
I'm no kind of expert but I'd say you need to a) have regular rest days. Take every Sunday off or something like that.
b) see doctor.
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I think there are both neck and hand problems here, compounding each other.
The effect of h*lm*ts on the neck is little covered on the cycling fora, especially the problem of nerve compression.
There will be some wear and tear in the neck in most who have passed age 40.
I don't think people were designed to arch the neck back whilst leaning forward, especially with any extra weight atop the head!
Empirically, I would suggest bars that allow the most upright back and neck posture.
The hands may have developed neuromas of the ulnar and/or median nerves at the wrist, follwing months on the road. Carpal tunnel release may be on the cards for the future but would be impractical right now.
I really can't suggest much of any use; a recumbent might address multiple postural issues but I can't magic one that fits, carries loadsa luggage and suits you out of the air...
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Straight/riser/Mary bars (i.e. those with just handgrips at the end) don't offer many alternative hand positions, so the strain can simply be overuse in one way. Adding the right bar ends can help, but I'm not really sure what (if anything) would work with a Mary.
Yes.
I have Mary bars on my MTB. Much more comfy than stright or riser bars, to me. But if there's a lot of road there isn't much movement of body position much less hand position. I'm not sure they are as good for that kind of riding - I'm saving up for some Jones bars, which have a second position.
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I'd be inclined to suggest On-One Mungo handlebars, set to rise (or other North Road bars), with a shorter & higher stem, to give a position that's considerably more upright and with the knuckles turned outwards, Dutch bike fashion. It sounds like things have reached the stage where minor tweaks won't help.
It's even possible to reverse a short stem to get more upright. It will handle oddly at first but you'll get used to it in a few days.
You may like to consider a sprung saddle such as a Brooks Flyer at the same time.
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I always get this after a few hours on a DF bike, knitting, using power drills, etc. I blame too much mousing.
I find an upright riding position with as little weight on my hands as possible helps, though that's a straight trade-off against saddle area pain. Butterfly bars with the traditional foam grips give comfortable positions and are good at absorbing vibration, in the absence of chunky tyres or a suspension fork. Tri-bars are another common suggestion, though I suspect not a particularly useful one for the type of riding you're doing.
But obviously a recumbent solves everything arm and saddle related. With one of those available for long rides and touring, comfort on the DFs became less important, so I stopped tweaking at that point. Best bike for the job and all that.
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Maybe raise the bars a bit
Your idea of fitting suspension forks to cause a bit of raise is interesting. I'd probably fit an "adjustable" stem like this
(http://www.spacycles.co.uk/smsimg/109/1713-4877-main-system_ex_adjustable-109.jpg)
Raising the stem on this also has the (good in your case) effect of slightly shortening the reach
Also might be worth lowering the saddle a tiny bit
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Peli here. Thanks so much everyone. Very helpful. We're resting at the moment and will consider all these suggestions in detail. Poor Woolly, hopefully we can sort him out.
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Coming from butterfly bars, never felt comfy where the shifters and brakes are sitting, even moved them around to a better place and ended up with my hands there, out on the side. Though to solve this might have to learn and live with them.
I got a 110mm adjustable riser at the max and have not cut the fork.
No previous injury, even as a single handed teenager, it's the little finger first then the ring finger then the whole hand. That starts to get cold then numb.
I was told to take the 58cm frame over the 60cm, because I would be carry a heavy load while touring. Which I do, I think with the trailer I carry around 45-55kg, it was much more in South America.
I tend to run my tyres below the max in tarmac, might have to go softer, but that will make it much harder to ride.
Lowering the saddle we going into knee problems. Saddle angle hasn't changed either, though the Brooks has gone a little hammocky, for which I had to move the saddle up around 5mm around six months back, because my knees were hurting.
We had two days of the bike and last night sleep was the best though still stiff when I woke up. But the five km into town I could feel it in my hands and lower arms and a bit in the shoulders.
To rule out some obvious possibilities, a few questions:
How much do you, your bike and luggage weigh?
Me at 95kg'ish and bike 15-16kg and the luggage around 50kg
What size tyres do you have fitted, and what pressure do you run them at?
38mm and never at the max psi
How tall are you and what is your inseam measurement?
6'4" and 34"
What is the drop from your saddle to handlebars?
The handlebars are above the saddle, by an inch or two.
Have you had any prior issues with or injuries to your hands or arms?
Nope
When experiencing the symptoms you describe, are you able to make an "OK" sign with your forefinger and thumb?
Yes
Where does the numbness and tingling start? Is it particularly strong in certain fingers?
it's the little finger first then the ring finger then the whole hand. That starts to get cold then numb.
Any way thanks for help, gave us something to think about.
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How much do you, your bike and luggage weigh?
Me at 95kg'ish and bike ......
Wooly, I have the answer for you. It is obvious from that small piece of information.
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Your symptoms are consistent with ulnar nerve entrapment, probably Guyon's canal syndrome - this is sufficiently common in cyclists to be often called "handlebar palsy". Get someone to help you check for Froment's sign (http://youtu.be/F-9fgiI2r4A) - the presence of this would strongly confirm the diagnosis (though the absence of it would not rule it out). Given what you've described to me, it's most likely that your position on the bike is causing compression of the superficial branch of the ulnar nerve (diagram (http://upload.wikimedia.org/wikipedia/commons/1/1f/Gray815.png)), although pressure on any part of the ulnar nerve would cause these sort of symptoms.
You need to relieve this pressure, or your symptoms are likely to continue to worsen. Ultimately this could become a debilitating injury that could impede your ability to perform even basic household tasks, so you need to take it seriously. I suspect that the sweep of your handlebars may be the key issue. Fitting Ergons may have actually made matters worse, because they're designed to work with relatively straight bars. If you're sure you want to continue with flat bars, I'd suggest something straight and relatively wide, with a thick padded grip - possibly even pipe lagging taped to the bar. The goal is to distribute weight away from the injured area, onto other parts of the palm. Ideally you would add aerobars or Spinaci, to give yourself a position that puts little or no pressure on your palm. Raise your bars as much as possible and make sure you're not slipping forward on your saddle and having to push yourself back. Check to see that you're not gripping the bars too firmly and that your wrists are in a relaxed and neutral posture. Anti-inflammatories like ibuprofen will help, but you really need to remove the cause of the injury.
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Thank you very much, uphillbothways (you certainly sound like you know what you're talking about!). Woolly (Henrik)'s been resting for a few days now and we've just ordered some butterfly bars so he can give those a go again. There is only one supplier in NZ so they're coming up from ChCh to Picton.
We're also considering other bail-out options, such as Woolly driving a car while I cycle, or even aborting the trip entirely and coming home while he gets sorted out. We certainly don't want him doing himself a serious damage.
Thanks again, everyone, for the advice and help.
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I hope it doesn't come to that Peli, and that you find a solution.
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Trekking bars ordered from http://www.cycletrading.co.nz, arrived with a speedy delivery and a note from a forumite who works there, world is small :-)
We just had three hard days cycling on the Queen Charlotte Track from Ship Cove back back to Piction. Let's just say it was fecking hard, off roading with lots of pushing and dragging our bikes up and over rocks and tree roots and steep hills. We had great weather, stunning views and great fun cycling the single track, glad we did it.
My hands are probably not better for it, since we now have very sore muscles in parts of our bodies that we didn't know we had muscles.
I had more pain in my hands/arms when we joined the tarmac for a wee bit, on the single track I was fine, go figure.
Will fit the trekking bars tomorrow with Lizard Bar tape, have a well earned rest day, then set out to see the Golden Bay nice and easy while hoping that this would solve the problem.
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I had more pain in my hands/arms when we joined the tarmac for a wee bit, on the single track I was fine, go figure.
I think that's because you take more weight on your feet when off roading, I never used to have much trouble when I mtb-d even quite long distances (comparatively).
I've been watching this thread with interest, as a frequent sufferer of numb hands. It's quite bad at the moment, and certainly worse with bits of metal in my wrist than before that happened. It takes less than 50 miles on the Longstaff for it to kick off. They start to tingle before I get the 12km to work on flat bars. However I'd rather have no feeling in my left hand than ride with butterfly bars. </snob>
Let us know if /how you get relief.
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Boab, if you've got metal in your wrists, maybe they're extra-tingly now due to the cold weather? I suppose this will depend how deep under the skin the metal is, but in wrists they're bound to be pretty close to the surface, and maybe how close the metal is to blood vessels and nerves? I know that when I had metal in my shoulder it seemed to react to cold, although the doctor said it shouldn't.
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Nah, Cudzo, I don't feel it in the wrists, it's the old favourite ulna nerve damage/compression- numb fingers, starting with the little fingers and extending to ring & middle. Textbook. It's just that (I think) the tunnel the nerve goes through is narrower because of the scar tissue.
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Quick update on Woolly's condition: we rode for about 120 km with the new butterfly bars and the pain and numbness is no better. Worse, in fact. So, we've decided the only sensible thing to do is to bail out (again ) and hire a car. Bugger. We can't risk him doing permanent damage, so for the month we have left in nz we'll make the best of it and come back to UK earlier than planned.
Thanks all for advice etc. Plod on.
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That's sad.
Shall I get some Jarlsberg in? :-*
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Thanks wow. We'll see. anyone know anyone with a car going spare in nz for next month? It's peak season and rental prices are unbelievably high. And we've spent the contingency fund already (on the asthma nightmare). :(
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Dunno if this helps, but I've just run a search using Carhire3000.com (used several times) and found cars for about £300 for 2 weeks, £600 for a month. Good luck, and best wishes to Woolly, v sorry to hear.
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can't he ship the bike back home, and get hold of a recumbent,
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That's such a shame Peli. My sister lives in Auckland but unfortunately doesn't have a car or I'd suggest you got in touch. Public transport there is a little lacking, too.
I hope long term he can sort something out, even if you can't rescue your NZ riding.
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Thanks all
Yes we have played with the idea of a sofa cycle for me, but before we get that sorted, research+shipping, our time in NZ is over.
So it is back to the UK and rethink it all.
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:( :(
Sorry to hear about your problems Woolly. It sounds like rest if the only option though.
Are you planning to do any walking while you have the car? The Tongariro crossing was good, especially starting early to avoid the crowds. The Routeburn track was busy! We only did a day on the Able Tasman coast track, but it was beautiful and pretty quiet compared to the other tracks.
Emma
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I suspect that the sweep of your handlebars may be the key issue. Fitting Ergons may have actually made matters worse, because they're designed to work with relatively straight bars. If you're sure you want to continue with flat bars, I'd suggest something straight and relatively wide, with a thick padded grip - possibly even pipe lagging taped to the bar. The goal is to distribute weight away from the injured area, onto other parts of the palm. Ideally you would add aerobars or Spinaci, to give yourself a position that puts little or no pressure on your palm.
I'd recommend changing to bars that have the brake levers mounted on a section of the bars that are at 90deg to a straight/flat bar. That would be either drop bars or north road style bars such as those I suggested earlier. With these, your weight is largely taken by the thumb & base of the thumb, with the outer part of the hand where the ulnar nerve is taking no weight at all. The wrist is in a more relaxed position too.
You inevitably spend most of the time with your hands where you can cover the brake levers, which is why bar ends or butterfly bars don't necessarily help - you don't use the alternative positions long enough.
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You inevitably spend most of the time with your hands where you can cover the brake levers, which is why bar ends or butterfly bars don't necessarily help - you don't use the alternative positions long enough.
This is a very good point. While I find butterfly bars are fine for general road riding, I suffer more if it's technical off-road or I'm riding in a group, for exactly that reason.
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Peli, you naughty girl! You've worn out Woolly!
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Thanks all
Yes we have played with the idea of a sofa cycle for me, but before we get that sorted, research+shipping, our time in NZ is over.
So it is back to the UK and rethink it all.
I've been watching this thread with increasing concern for your well being.
Whilst it's dissappointing to abort your current cycle plans the proirity has to be a solution to your hands/numbness so your sense & courage to make this decision is to be applauded.
Once you are upforit again you can resuurect your campaign to conquer the world :thumbsup:
By way of a bit o' banter;have you considered a unicycle ;)
If you are seriously considering a 'bent be aware that Marj's Trice is currently for sale.
I hope we get an opportunity to see you both when you get back.
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Thanks everyone for the comments and advice. We managed to get hold of an old banger which accommodates my bike (expensive to rent, but not as dear as some we've seen) and have been exploring the Abel Tasman National Park and Golden Bay. Woolly's an excellent support car when I'm cycling, and provides regular encouragement, biscuits and pick-ups in pissing-down conditions. I have it made! We're also doing some walking together, which is nice for a change.
As for his hands and arms, they're a little better now he's resting, but still causing him pain at night.
We've reluctantly booked flights back to the UK (LHR) in mid February. That's going to be a shock to the system! I think some woollypelipootles will be in order to keep away the SAD! It will be great to see forumites again. :)
jogler - very tempting re the 'bent. Would it fit the woolly one? Perhaps we can drop in to see you both once we're back. :D
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jogler - very tempting re the 'bent. Would it fit the woolly one? Perhaps we can drop in to see you both once we're back. :D
I'm sure there is sufficient length on the boom for the 'bent to fit Woolly however the 'bent is sold subject to me holding the folding.
Nevertheless you can come here anytime you like for any reason;or indeed no reason :-*
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Update: arms and hands are still suffering when I sleep, I tend to sleep on my side and have my arms over or under my head.
The vibration from the gear shifter inn the rental car and even the vibration from a shopping trolley lingers for a long while, longer than I can remember.
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What a shame it is affecting your tour :(
The decision to stop riding is probably a good one though, anything involving nerve damage seems to take ages and ages to recover.
Personal anecdata: I didn't get the feeling back in my left big toe for a full 11 months after PBP! In fact, I can still get an odd tingling sensation in the ball of my right foot when I am driving for long periods of time due to vibrations. I am sure this is related to the cycling nerve damage as I never had this before that.
When I damaged my ulnar nerve on an audax where I had to do all the braking with one hand it took about 6 weeks of mostly rest to fully resolve. I suspect if I had damaged it for a longer period of time when it first happened it would have taken even longer. The good news is it did get better in the end, and with some hand position alterations and extra padding under my hoods I was able to do much longer rides without setting it off again.
Good luck with the rest of your trip, and keep the reports coming!
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Roughly two months of the bike now. I still wake up with sore hands/arms and struggle to make a fist for the next half hour or so, especially if we have done a long walk and I'm tired.
The vibrations from pushing a shopping trolley or resting my hands on a gear stick I can still feel for a while after. The shoulder with the broken collarbone, 10 years ago, is causing me pain nearly every morning.
I often get very sore feet in the morning the first few steps out of the tent are very tender though I don't think it is linked. Probably because I don't have proper walking shoes. Or could it be because I have some nerve damage/infection.
Well we will be back in the UK in a fortnight and will bug our local doctor and find a physio and even start yoga.
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I am running Thorn Comfort Bars on my LHT (which is a 60cm if you are ever back close enough to drop round and try it!) which are riser bars with a bit of extra rise and sweep. They are very comfy for me but I haven't done any long tours on it yet, and apparently they don't work for everybody. Only one real position though so probably not the thing for long road tours - they excel where a bit more control is needed, off road or when carting toddlers around. :) if I ever get the chance to ride round the world I'd probably default back to flat bars and bar ends.
You could try moving your saddle back a little and down a gnat's nadger to take some weight off you wrists, and go for a slightly more angled stem to bring the bars up and back a tad. Effectively rotate your position back using the BB as an axis so you end up sitting a little more upright but keeping your reach to the bars and leg extension the same. Changing the relative positions of saddle and BB might bring other issues into play though.
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Today I visited the doctor and got an appointment with a orthopaedic surgeon in eight weeks time. And told that I could go to a Spinal Drop-in clinic to check over my neck and back, to see if they are linked to my dead arms.
I still feel it when pushing a shopping trolley and can feel it when I lean on my hands. Along with when I end up being tired and sleep on my arms. The broken shoulder isn't any better either, old injury that only has caused problems since this started. Also I need to make sure that I don't lean on the lower part of my arms too long also too be careful when using a mouse, hand leaning on table.
While in Melbourne I talked to a remedial massage therapist who said that it could be cured with massage, 5-8 sessions, and I should avoid the knife/surgery.
So I will go to the drop in clinic this week to see what they find and then look for a sport physio to see if they can mend me.
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Sounds like progress. Good to hear.
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Hope that the non-invasive solution works.
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Gimme a shout if you need a recommendation for a good sport physio, a posture/gait specialist that also knows cycling (Hampstead based).
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Good luck with the physio Woolly!
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Well that visit was a bit of a waste of time, the visit to the Drop-in Clinic.
They only do lower back pain, but they signed me up for a future visit, when that would be I don't know. They said that they would get back to me and ask what time I would like to come in (eh?) and they also said that the waiting list isn't long either. But I'm sure that we are talking a few weeks into the future.
So I'll call one of the other drop-in clinics tomorrow to find one that do upper back and neck.
Thinking back about it, when the doctor prodded my back earlier this week, something did happen. I can/could feel that there is something going on in my back and also I could feel it in my hands.
I went shopping today and ended up dragging the trolley with one finger, as I didn't like the feeling in my hands. It is not pain or discomfort but it is something I don't like the feeling off, like it is not right. Very hard to explain because it is not just one thing.
I don't know if it is linked at all but I also have very sore ball of my feet in the morning which is going away after awhile but it is getting worse in the am.
I think it is time to book another trip to the doc. Sorry for rambling along but yacf it a good place to keep track and some brain picking.
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Sounds very unpleasant and annoyingly neuro and vague. I hope you find someone to help you narrow down the issue soonest. I do wonder if it's going to be weeks whether you have any cash to find a private physio to have a look at you, they may be able to narrow down the issue quicker ofr you too.
Neuro neck and shoulder and arm stuff sucks. And yes contemporaneous notes and talking it through online is a useful thing I find for me too. I realised from dredging my Livejournal that I've been complaining of the same visual issues for over a decade now and only just got full-circle diagnosis of not-visual actually vestibular and neurological >:(
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Have you considered an Osteopath.
My other thought was have you picked up some obscure virus on your travels?
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Woolly, have you tried searching for an RSI specialist?
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Though I don't like to disagree with loadsabikes, I'd steer clear of Osteopaths for your purposes.
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Don't tar all osteopaths with the same brush, Clarion. They aren't all snakeoil quacks making ridiculous claims.
Woolly,when you say an 'unpleasant feeling', is it a sort of buzz, but not bzzzzzz, more of an unpleasant thrum?
If so, I'd put some money on this being neurological and probably your upper back. You took a fair tumble in south america, I seem to recall, in the incident that broke your forks.
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mrcharly you are pretty much bang on!
The more I think about it I wonder if it all comes from the back. Tumble, helmet and my general problem with by back, though that problem is lower back.
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If you can, get to a sport physio. They prob can't fix it, but they will be able to tell if you have muscles in spasm that are causing the issue, or if it is spine damage.
Pelly can help here. Get her to press (not too hard, just firmly) on either side of every vertebrate and joint between every one. This shouldn't hurt. If it does in any area, (maybe base of neck, T1 area), then you have inflammation there - this needs sorting of possible.
The other possibility is carpal tunnel, but I think you've had this investigated.
I have a book, recommended by people on here "treat your own back". If you have a postal address I'll send it on to you.
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Don't tar all osteopaths with the same brush, Clarion. They aren't all snakeoil quacks making ridiculous claims.
I know. We have one who comes into our Practice. But remember that the evidence base is that they are only of limited use. Here's what the NHS say, in short:
Does osteopathy work?
There is evidence that osteopathy is effective for the treatment of persistent lower back pain. The National Institute for Health and Clinical Excellence (NICE) recommends it as a treatment for this condition.
There is also limited evidence that it is effective in helping recovery after hip or knee operations.
There is no good evidence that osteopathy is effective as a treatment for any other health conditions.
Serious side effects or complications have been reported, but they appear to be rare.
Here's the link for further information on the evidence:
http://www.nhs.uk/Conditions/Osteopathy/Pages/evidence.aspx
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mrcharly thanks, I haven't been diagnosed with anything yet. I got a appointment with a Orthopaedic Surgeon in 3-4 weeks. I think I'll call up and talk to my doctor. But mainly I'll wait to see what the Orthopaedic says before I go around the houses to get mended else where.
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Good plan. Bit of a long wait, though. :(
Hope it's not too much of a problem in the short term.
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Well I couldn't wait any more so I (we) went to the Clitheroe Physio Centre for a drop-in session.
After a half hour Q and A she asked me to bend over in various directions and then prodded me with a stick here and here, to test my reflects and that I haven't lost any feelings in my limbs. She then did a very light massage, to figure out where things hurt and caused other places to hurt.
We narrowed it down to that there is something wrong with my lower neck and upper back where they join together with shoulders and just below my shoulder blades. Both places were very stiff, not painful but I could feel that something was going on in my arms and hands when she pressed there. She is pretty sure that it is not carpal tunnel the pain/discomfort/"this is not right feeling" I described does not link to that. The problem i have is highly likely to come from the back/neck area.
When I stood up from the torture table, I could really feel things going on in my arms, from shoulder to hands. When walking out from the centre I felt slightly dizzy/woozy and that the pain/discomfort had been moved around. Hard to describe but lets just say I didn't feel right and I could feel where things were wrong. She also thinks that the "little" fall I had, when we both got thrown off our steeds in Patagonia, might be the cause of it or at least not helping in healing.
She gave me some exercises to do to strengthen my back and neck and we agreed to meet up in two weeks time. Which fit nicely to be the day after my trip to the Orthopaedic Surgeon, whom she said that was normally the one they would refer you too after you had been referred to them by your GP.
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I did the exercises for nearly a full day before I had to give up. Pain from base of scull to way down my back past my bum to the upper back of my legs and the worst case of numb arms, shoulders and wrists I have had for a long time. Not a good night sleep at all.
I talked to the Physio the next day and we agreed that I better stop until we met again, which is tomorrow.
We just got back from the orthopaedic surgeon who said that I was in the wrong clinic, this is a hand clinic, and that I was booked in for an operation for carpal tunnel not a check up. He agreed with the physio that if the exercises caused more discomfort STOP and that it isn't a carpal tunnel problem.
He have, will, now booked me in for a full MRI scan and a test to see if there is any nerve damage, can't remember what it is called, so more waiting for me - four to six weeks, again...
Booking in a trip to GP just to keep him updated and see if it could be worth it to go private to get the scan done any faster, cause I want to get back on my bike again.
I will go to my physio appointment tomorrow to pick her brains to see if there is anything I can do now and later to help/prevent etc.
Good news is that two days of 4-5 hours walking up and over Boulsworth Hill and into the Yorkshire Dales in deep snow at times, didn't cause any pain in my arms/neck.
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Ouch. There seems to be confusion with the orthopaedic surgeon having been told it was a carpal tunnel problem. Good that walking in the snowy Dales is going well though.
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hmm it's been a week with no word.
Called the hospital and I know that my MRI scan request is in the queue but they wouldn't tell me when I my appointment would be or when I will know when my appointment. Only info I could get out of them is that I will know in 4-6 weeks when my appointment is.
Talked to my GP and going private wouldn't really speed things up as I still need to see a specialist and get booked in for MRI scan, 2-3 weeks the GP think. And at least over £500 for a scan to gain two or so weeks isn't really worth it.
In other news - booked in a date with Kevin at D Tek to see if we can find a sofa to ride on, so at least I can get out and do some riding.
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Keeping fingers crossed that the mri shows nothing. Nerves can recover, you can stretch muscles. Will just take careful work and discipline.
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Thanks, the Physio, whom I meet the day after the surgeon, have given me some simple and light stretches to do, which I do very tenderly - which she told would be the way she normally would sort this kinda problem - and if it starts to give bother I stop.
Peli just jumped on her bike to go out for a ride, she is doing a few miles for me :)
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Thanks, the Physio, whom I meet the day after the surgeon, have given me some simple and light stretches to do, which I do very tenderly -
That's a lesson that I had to learn. I was doing the right sort of exercises, but far far too hard. The physio gave me more simple ones and showed me how to tell if I was doing them too hard. The intensity seemed so pathetic to me - but after a few weeks I could really tell they were helping. Now I can do them on 'hard' mode and have added other exercises.
If I don't do them at least 5 days a week, symptoms reappear.
Now I did have different problems to you, but they were spinal and stemmed from old accidents and recent neglect.
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The intensity seemed so pathetic to me
Similarly for me.
[But still making progress (with back strength and flexibility) after 20 years of 2 X 5mins/day.]
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But still making progress (with back strength and flexibility) after 20 years of 2 X 5mins/day
What twice daily exercises are you doing for your back, out of interest?
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But still making progress (with back strength and flexibility) after 20 years of 2 X 5mins/day
What twice daily exercises are you doing for your back, out of interest?
Local Physios recommended R. McKenzie's "Treat Your Own Back". I had gone to the first appointment scared of having my back pulled about and made worse; instead I was urged to do a selection of "ridiculously" gentle movements, stopping well short of any painfulness. As in the book. Googling "McKenzie back exercises", now, seems to give a huge range of sometimes stressful-looking stuff. Also, what a particular condition needs does vary between individuals. But basic ideas about posture, not slumping, and doing gentle extensions, seems perhaps to be generally applicable. I am not an expert! (Sorry to be rather vague.)
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30th of April I will be scanned, brain and spine. I hear that it is possible to get the "photographs" on a disk, no if that is true - how cool would that be :)
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30th of April I will be scanned, brain and spine. I hear that it is possible to get the "photographs" on a disk, no if that is true - how cool would that be :)
I can see you should be ok with the spine bit, but it may take them some time to find the other. Good luck. (and yes, you can ask for a DVD)
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I think they said it would take up to 90min to do it all, which means that they must have a crack search and rescue team to find the first bit :)
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Go armed with a USB flash drive. They gave barakta a copy of her head CT and hand x-rays on that.
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30th of April I will be scanned, brain and spine. I hear that it is possible to get the "photographs" on a disk, no if that is true - how cool would that be :)
Hope the scan helps to get to the bottom of this Woolly, all the best for it.
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Kim :Oh great idea, I must remember to format it to FAT then and not arrived with a ext4 drive, 16Gb for my insides must be enough :)
S. Pluck : Thanks mate.
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Kewl. Never thought of that, but I'm so used to stuffs being on fillum. I can recognise my chest x-ray across a busy room (pneumothorax is the give away). Be useful to have some record so I can save them the effort each time, and say 'Look, it's albugrup. It's always been albugrup. It won't be different today just by taking a holiday snap.'
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30th of April I will be scanned, brain and spine. I hear that it is possible to get the "photographs" on a disk, no if that is true - how cool would that be :)
Hope the scan helps to get to the bottom of this Woolly, all the best for it.
Yeah, hope it goes that extra mile (or 4 inches)
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After a bad night which causes me to sleep and not move when discomfort normally causes you to turn in your sleep. So my left arm was rather dead and borderline painful and took around 40min before I had full use of it again.
I get a letter with a booking for a Neurophysiology - Nerve Conduction Study - for a week after my MRI scan.
There is something afoot in the NHS regarding my aliment.
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Sounds as if the right diagnostic steps are being taken - all the best for the scans / tests and results.
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30th of April I will be scanned, brain and spine. I hear that it is possible to get the "photographs" on a disk, no if that is true - how cool would that be :)
Brain on a disk, cool!
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I've just had a second period off the bike with a nerve problem all the way down my right arm from the shoulder into the hand. Only a month this time - three months last year. It came on suddenly this time one day when I set out to ride to work. Last time was more gradual. Makes gripping the bars painful and, as I took that as a warning, I stopped riding.
I had not associated the cause with cycling, and neither did the specialist I saw last time. I linked it more to keyboard use - "RSI", though the specialist wasn't keen on that term. I was referred to a physiotherapist, but that did no good; not her fault, but both of us concluded that it was making no difference. In the end, I just had to rest, although she did give me some exercises.
I am thinking about handlebar position, however, as stretching the neck to look forward clearly does not help.
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I am thinking about handlebar position, however, as stretching the neck to look forward clearly does not help.
What level do you have your screens at work?
'Conventional wisdom' has them at eye-height. Recent research suggests this is bollocks and that a lower screen is much better.
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'Conventional wisdom' has them at eye-height. Recent research suggests this is bollocks and that a lower screen is much better.
I've been saying that for years. I have my monitors (a pair of 17" 5:4s) set so the top of the screen is at eye level, because that's simply more comfortable.
I wonder how much 'conventional wisdom' dates from the days of large desktop computer cases with a monitor on top, operated by highly competent touch-typists? It's not like operating a computer is a natural thing to do, anyway.
Though I reckon the keyboard/mouse ergonomics (chair height and so on) are much more critical.
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Yes, roughly eye level. Will think about lowering that.
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Just back from the very noisy MRI scan. Slight delay at the start spend waiting around in a bathrobe. Every time I fell asleep I got woken up by a moving bed. Music was radio fed buy "air" tubes which of course not the best of qualities.
I got to see the scan and I clearly do have a brain contraire to other believes. I can get a copy of the scan from them if I write them a letter.
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Had my
electroshock Nerve Conduction Study today took less than 5 min to wire me into the mains. The very nice lady chatted for 20min more and she always gives room for cyclist as she counts how many there is on her way to work. I had discomfort in my hands and lower arms for a few hours after the study.
Now it is really just the waiting game for me.
Last week I had a whole week where I would say that I had no symptoms worth talking about. And that is the same week that I got back onto the wheels, thanks to Auntie Helen trike. Except my feet still hurt when getting up in the morning, though walking in cycling shoes was rather sore, but but getting up in the morning after a day in Shimanos didn't cause extra pain.
Funny that the same day that I figured out that the pain was less the every next day we were back to "normal". No nasty pain as in Dec and Jan but a "this is not right" strong discomfort.
Best news is that I can cycle again, had 15 miles today rather hilly at first then flat.
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Sounds like progress. Be patient.
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Sounds like progress. Be patient.
If he's going to be riding a recumbent trike around yorkshire, he'll learn patience . . . .
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Sounds like progress. Be patient.
If he's going to be riding a recumbent trike around yorkshire, he'll learn patience . . . .
And so will his riding partner, patiently following on his wheel(s). ;)
He did very well on a loop-involving-hills yesterday and outpaced me on many sections: up Skipton Old Road to the Elslack turnoff, down to Earby, down to Salterforth (for beer), to Foulridge along the canal (he squeezed through the cycle barriers fine, while I struggled with my wide Jeff Jones H-Bars!) and back along Castle Road and Heifer Lane to Winewall. He was 'papped' by some schoolgirls who were trying to be very discrete with their camera phones, hiding them in their blazers. Woolly pointed out that the flashes gave them away. We've never attracted so many comments before: "Wow, that's well sick!", "Look at them lot!", "How much is that, eh?!", "Go on lad, you can do it!" etc.
It cannot be said that we are not being noticed. ;D
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A month to the day from when I had the MRI I decided to give the consultant a ring to figure out what is what. While making a brew while waiting for the line to be free, Postman Pat dropped a letter for me through the letterbox, have a wild guess whom it was from?
So I now have an appointment in a month time with the consultant. They are just waiting for the very last minute aren't they...
My arms and neck are at their best they have been for a along time, I would nearly say that I'm symptoms free, bar the odd shot of pain when I extend my arms fully, though my feet are still killing me in the am.
In other news I managed to order a copy of my scan for £10, they will let me know when I can come and pick the CD up. The person who dealt with it asked me why I wanted a copy and I made him laugh with saying curiosity :)
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:thumbsup:
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Comments I get on my trike are ace too!
Glad you are getting scan copy, hope consultant is able to tell you something useful in a month's time.
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Back from the consultant - good news is that there is nothing wrong with my spine or brain that could have caused it. There is some chronic fatigue to my spine in places, wear and tear but that is normal to people at my age. I knew of the lower back issue, this I have had for years. The neck is new, say in the last 10-15 years, I have felt that for sure over the years. The consultant said that if any damage had caused this problem, even after a long rest (where I feel better), would have shown up on the MRI scans.
The consultant will send me on to a neurology surgeon, so another 4-6 weeks wait coming up, to check on my pins and needles in my arms and hands, which have calmed down over the last 3-4 weeks. Only had 1-2 flare ups after having slept on my arms, these pins and needles is much worse than normal. The neurology surgeon should figure out if there is any medical things that can be given, like vitamins or anti epileptic seizure pills, but the consultant weren't sure. In the last 2-3 weeks my arms have been better though an "ability" to snap, crackle and pop my neck has come back, totally gone in the last eight months. If I don't do it my neck seized up and becomes rather stiff. I went to a doc in Denmark many moons ago and he said it was normal and wouldn't cause any damage, since it was only once or twice a week. Though now it is 3-4 times a day and the stiffness is right where the physio was finding stuff to prod and poke.
So the consultant pretty much told me to get on my bike - do what you like. So we need to find a good bicycle fitter up near us so that we make sure it is not the bicycle set up that gives me trouble. Sadly weather and illness have stopped us from really getting back on the bicycles again to test out if the trike is the way to for me.
I will go back to the physio drop-in centre, even if the consultant said that it wasn't really to any use*, and see what she thinks we can do, since she have a long and good report of what was going on and how I felt when it was bad.
Still haven't got a clue why my feet are agony first thing in the morning, this is clearly not normal, the consultant only said that there is nothing he can see on the scan that is linked to it. Hopefully the neurology surgeon would be able to tell the consultant said. When the physio prodded me at the start of this I ended up with three days relief, so it is clearly linked to my neck somehow. The stretches she gave to solve this didn't help anything.
I got a trip to the GP on Monday booked anyway, so I will update him then and also ask what next regarding my feet and if we can speed this up with going private. Since this started over eight months ago and we started to see the doctors over six months ago and it looks like I'm in for the long run here and kinda want to get on with things.
So we are still in limbo, I don't feel 100% and there is clearly problem with me body and I don't feel 100% sure about getting back to work or on my bicycle. Because I for one don't want to go through this again and no-one really knows what is causing this and I fear that cycling and labour will cause it to come back.
*) Pilates and yoga he seemed rather indifferent to too - according to him they wouldn't help to prevent it - we just think that it would give me some core strength and that can only help and keep me fit and mobile.
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Surgeons often pooh-pooh physio (pilates, yoga etc).
If they didn't, they wouldn't have chosen to be surgeons.
Core strength and flexibility will help stave off decrepitude.
I think that you should keep the physio exercises up, ensure you do core strength exercises and stretches. They won't do any harm, *will* do some good and possibly lots of good.
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Y'know, Woolly, the physical neck/back symptoms you describe sound awfully like wear & tear arthritis, and I wonder if there's an issue with a calcified growth bearing on one or more nerves? IANAD, but I do suffer from arthritis in my right leg, ankle and foot due to an old motorcycle accident, and the symptoms seem remarkably similar. Just a thought. Anyway, in my case weights and exercise make a big difference. I do suffer temporarily after exercise, but the level of regular daily suffering (especially in the early morning) is far less if I am fit and flexible than it is if I've been lazy!
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Best wishes to the Woolly One.
So far as your feet are concned, has anyone mentioned plantar fasciitis? My daughter is currently suffering from this, Long with a whole load of other, hopefully temporary, post-natal disorders.
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Best wishes to the Woolly One.
So far as your feet are concned, has anyone mentioned plantar fasciitis?
That was my first thought.
Good that there isn't anything serious going on with the spinal cord (prolapsed intervertebral discs etc). The whole shoulders / arms thing sounds like a really bad repetitive strain injury. Does sounds as if it is all (apart from the feet) very slowly settling down though.
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Coming late to this thread as a very occasional lurker.
Numbness in little finger, spreading to ring finger, burning sensation on the 'karate chop' edge of my hand.
Saw a nerve specialist in the hospital he said make fist, bend arm, is that the pain you feel.
Stunned I agreed, he said pressure on the ulnar nerve as it passes around the elbow joint.
I had electric shock test down my arms to 'prove' there was pressure on the nerve.
Surgical option one, (Which I took) open elbow, remove excess tissue around the nerve, go home same day. Pain stopped instantly.
Option 2. Possible future development, as above but 'move' the nerve to a less stressful area of the elbow.
To prevent return I was instructed to:-
Reduce the amount of use of air driven screwdrivers, putting twist into my elbow. (The main cause of my problem)
Straighten my arm when cycling and put more weight on saddle less on bars.
Keep moving my hands around the bars
Use padded gloves for any 'impact' activities (Hammering, sawing, digging etc)
Do yoga style stretches on my arms, shoulder and neck (the whole ulnar pathway) to try and reduce muscular tension pressing on the nerve.
YMMV
But you have my sympathy, it is not a nice sensation
Dave
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When we have settled in Skipton we will start to go to Yoga.
I have done some climbing around while doing DIY and none of that has set of my hands and arms, even a using a sander didn't cause any discomfort.
When moved I will build up my touring bike again and start with some gentle rides and find a bicycle fitter.
Regarding my feet I'm not sure if it is plantar fasciitis, since the pain disappears as the day goes, according to web search it gets worse doing the day - e.g. the longer you are on your feet. I have tried some stretches that the physio gave me, 3-4 times a day and that changed nothing. I got some very good walking shoes in Feb, fitted by the great people at Whalley Warm and Dry (http://www.whalleyoutdoor.co.uk/shop/), which I only walk around in. We have done some long walks and this isn't causing more pain that day or the next. I'm not on my feet all day which is one of the causes.
On a weird side note: after more than three weeks with a bug that had settled in my ears and played around with my middle ear*. I went to the doctor and got some antibiotics for it. I honestly think this is the very first time I have taken antibiotics and as the Doc said it might do you "wonders". Which it did after the first pill stuff started to happen and after the second pill something was clearly afoot (see what I did there and it will be even more clear later :) ). Dizziness, pressure relief, cold etc in my jaw/teeth, behind my eyes, around my forehead and anything related to my ears - I just felt weird. I could feel the effect of the pill 15min after taking it and was riding on a "high" for one to two hours after. This massive effect went on for three days and I'm on the last of the antibiotics right now and these sinus related problems have calmed down, would not say that it has cleared 100% yet.
Here comes the weird part - the pain in my feet has gone from a 9.5 (out of ten = utterly agony pain) on a bad day to around 6.5 and good days it has dropped from 7.5-8 to 5. And the time the pain hangs around is only 10-15 min instead off 30min, if the pain stays like this I'm happy and could live with it.
*) a problem, infection of the middle ear, I really suffered from as a wee kid - the worst agony, pain etc. you can think of. I had to wear a hat that covered my ears very early autumn and late into the spring. In hope that I would only have it 2-3 times a year, but luckily have been free from since I was around 15-16.
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Had my first real bike ride on a oop wrong Saturday just gone. 20 miles on towpaths, bridleways and country lanes, oh did I remember to say rough and hilly - right reminiscing of our tour. Along with a rather hilly 10 mile warm down ride Sunday.
Other than being knackered with tired arms, hands and wrist I'm not suffering anything. Still need to play with the set up of the bike.
Went to the doctor today to check up on my ears, as they still playing up. Where I could tell him that since I started on the antibiotics my feet has gone from agony to slightly sore for a min or so in the morning. Just like when you take your shoe off after a whole day in them.
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Very good news. Hope your recovery continues.
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Feet back to normal now and I'm on my feet for three days a week, so that is good. Ears still not good, not looking forward to winter. Arms have not been hurt by work, though I still wake up 2-3 times a night with painful pins and needles and it is very hard to make a fist.
Aaaaaand in other news my appointment at the neurology clinic has just moved to the 4th of Dec, bang on a year to the day where I had to stop cycling, so over a month extra waiting for that appointment.
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Got tired of waiting so I went to the Doc to ask what other things we could do to find out what is going on. The last few weeks have not been great, I think I have got to a plateau where rest can't cure any more. Talked things over with the Doc, he will write to the neurologist to ask if it is possible to get me in faster, the Doc was concerned that I haven't been mended yet. He was pretty sure that the neurologist would give me some drugs to figure out what is going on. And we decided that if I started to take them now I could report back when I went to see the neurologist and therefore would be a step ahead at the first meeting.
So Amitriptyline was given - an anti depressant but at low doses it works as a muscle relaxant and would also help to numb the pain in nerves. This drug I was told that could take a week or so before I could feel any benefit. Main plan was to remove the pain in my arms so that I could sleep without waking up by the pain and also just make life better for me. Though as the Doc said it isn't a cure so don't go and be stupid since you now are (should be) feeling better.
Boy this stuff works even at 10mg (low dose), within 10min of popping the first one I could feel that my stomach wasn't too keen on what I just ate, a bit like acid burn building up. And then there was the weird feeling in my ears, a bit like when you are standing in the sea and you can feel the wave go past, but I wasn't sure if it was pain coming or going. Then sleep started to knock on the door got very tired very fast, trying to read a book but letters started to run about on the page like ants.
I normally wake up 2-3 times a night because of the arms, 2-3 because Peli moves about in bed or she goes for a nature break, I'm a light sleeper, but never have any problems with finding dreamland again. I didn't hear her go to the water closet and she heard me talking in my sleep when she came back. Since the dog arrived I have woken up by myself by 7.30am and just snoozed until 8am, I like bed me, but the first morning on the drugs I woke up when the alarm went at 8am and had problems with waking up, not a thing I suffer from normally.
The rest of the day I was a little tired but fine.
Second night on the drugs I felt the same with sleep coming in fast and stomach upset and Peli said that I should probably have eaten something with the drugs. I was out cold until the alarm and it took some time for me to wake up.
Main problem with my arms and sleeping is that I sleep on them, but normally wake up when the pain wakes me up, but on these drugs that didn't happen, so I woke up to a very painful right arm with a cold hand that was hard to make a fist with, much more so compared to when I'm off the drugs. I think it was because I was knocked out cold by the drugs.
While driving for an hour and a half today I had to stop to have a little kip near the destination and took it very slowly back. While driving I could feel the pain in my back, neck and arms pulsing along and the vibration from the steering wheel when holding it tight'ish - but not white knuckles - set off my hands just like before. Got home utterly spent not sure if pain was going or coming but had this feeling all the way down my back to me bum and out to my hands.
I have a pretty high pain threshold and get used to the pain over time and don't let it bother me too much, I got a dodgy knee and back that often play up. So I wonder if what I felt today was linked to the nerves getting drugged and releasing/relaxing and that is causing me to feel funny not in a this right way, which is pretty much the best I can explain. I clearly am not myself on these drugs. It reminds me how fast my body reacted to a low dose of antibiotics earlier this year. Doc said give it a few days before you feel anything, I had one pill and my ear infection was doing wonders to my head and balance. I had three days of being "high" not sure if I was coming or going for the first two hours after popping the antibiotics.
So I'm not going to take more Amitriptyline until I have spoken to my doctor again.
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Oh I forgot to add, among the side effects we have: need to wee, can't wee, need to sleep, can't sleep and many others and my favourite pins and needles in hands...
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Amitriptyline is *very* sensitive to dose when used for this sort of thing. Barakta ended up doing something complicated with half pills on alternate days (it has a fairly long half-life) to achieve the desired effect without turning her into a zombie.
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Oh I forgot to add, among the side effects we have: need to wee, can't wee, need to sleep, can't sleep and many others and my favourite pins and needles in hands...
It is sometimes prescribed to control troublesome bedwetting...
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Amitriptyline is a double edged sword. I know many people were able to acclimatise to and tolerate the "side effects" after a few weeks and take 10mg-70mg long term. I am not one of those people and I've taken it about 5 times now cos it works for the purpose I need it for (giving my nervous system a reboot when I've buggered it) but yes the sleep/peeing/stoning effects are normal. I only take it these days if my nervous system is so buggered I'm getting physiological anxiety side effects which won't go away with any other method and I'm constantly triggering them cos of other weird obscure bits of my body that don't work...
Amitriptyline won't help the problems you're having, at a guess it'll merely reduce the pain - after about a month if it's going to - while you have to see if the side effects will reduce at all. I find it does marvels for "pain" but for me it's not worth the effects to remain on it all the time which my GP would happily do. Hell I've been offered pregabalin and gabapentin several times now which are like the biggest brothers of amitriptyline of nerve pain but again won't help the cause of the problems and right now I'm in the "don't mask it" stage until I've exhausted round 4 of physio and orthopaedic nonsensery. My shoulders are known epic fail and my wrist/arm is a work in progress.
Wooly, you mention your hands getting bent in your sleep, do arm splints help at all? For some/all of the night? Sometimes you can buy better ones than the GP/hospital can give you or you can get OT to make you custom ones.
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Because of the way I felt the last two days, I'm not going to wait and see if the side effects fade away in a month time. I can live with the pain, as I have done for the last 11 months, it is just getting annoying to live with and annoying that we still haven't figured out what caused it. Yes the Doc did tell me it would be good for pain and not a cure -e.g. don't do stupid things because you are feeling better.
My hands/arms are not getting bent in my sleep, it is more laying on them and not moving, the pain is always worse when I'm very tired and therefore sleep deeper than normal and therefore don't move about as I normally do in my sleep. The drug knocked me out for six which caused me not to move about which then made my arms hurt.
Along with the funny felling of not being myself, kinda backwards, didn't like it at all and don't want to be in that state until the side effects wears off just to be free of a pain that I have somewhat learnt to live with. Haven't tried splints unless they can keep the weight of the arms, neck and shoulders I don't think they would work.
I didn't have any problem with peeing that was pretty normal, it was just to list a few of the many side effects that was on the list. Reading it you wonder if you should really be taking this and how the heck can you fault find on a drug with that many side effects that are the opposite of each other. It is a "cure" for bed wetting but also causes you to pee more or less depending which way the swing goes today...
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Over the last few weeks I ended up with a painful knot just below my right shoulder blade. Which then spread out down my back to the side and up and over my shoulder unto the chest and down my arm. I have also noticed that my strength has gone down, I don't feel I have the same oomph as I used to have. Along with not feeling sure about my grip and strength. I would try to get a stubborn bolt loose, but felt that I didn't have that extra bit needed and also felt that I wasn't sure that I had the grip to do the job, might drop the tool or felt like it would slip out of my hands. Also there was the feeling I might do some damage here.
So I decided that it was time to get something done, booked in at the local physio and am planning to go and register for a new GP (we have moved so it is time to do so). Our soon to be old GP and very good GP has done a good job and I'm not trying to undermine him at all. But I would like to get a second opinion, might be that the new GP has a new idea on what could be the problem.
I went to the physio yesterday and she is the first one who has said what it could be with confidence in her voice. Lack of technical words here - but the fluid in my spine is not moving about as it should do because of the bit of the spine between my shoulder blades are stiff, muscles seized up. When she pressed there it was not just one vertebra that moved it was a gang of them. She did some stretches to me and found the same issues that the previous physio did.
What was different was that she have seen the same issue/problem/pain on other cyclists who also had to get of their bikes because pain in their arms and hands, just like me but not as intense as my problem. She told me that she got them riding again after some work on their backs. She then offered me acupuncture to help manage the pain which would come from her manipulating me, this happened each time I was at the last physio. So I went for it, never been stabbed by that many sharp things before, unless you count when I fell into a cactus.
I did feel the numbness/tingling coming as I stood up from the bed and on the walk home, but it never kicked off. I also managed to have the best night of sleep in a long time, I woke up once compared to normal 2-3 times, with much less pain/numbness compared to before. Today at work I did feel my right hand playing up at the end of the day and it was good to know that I could clock of a bit early
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I hope that she has finally given you a correct diagnosis after all you've been through, and that she can resolve it.
You sound positive, which is an excellent indicator.
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I'm repeating myself here, but . .
IME, a good physio can achieve wonders (but only when you follow the instructions exactly).
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Well the next step in the saga was taken today, after a good three months of waiting.
Visited the neurologist today who has booked me in for a barrage of blood tests, I'm going to be empty after I have filled all the test tubes. Might be linked to Lymes Disease, though I'm very sure that I haven't been bitten by a tick. He will have a meeting with the radiologist on Friday to double check the MRI scan, depending on what they decide I might need a new MRI scan. The specialist I saw back in July said that he couldn't see anything in the MRI scan that I had in May EDIT: April, other than normal wear and tear for a 40+ old git. But the neurologist saw and showed me something - I missed it too since I now have the MRI on disk.
(http://www.woollypigs.com/photos/MRI-neck.jpg)
Look, that is the inside of a woollypigs, between #6 and #7, if I'm counting right, there is a disc poking out, which could be causing the pressing on the nerves. He also spoke about my muscles pressing on the nerves in my neck area, I can't remember what that was called.
I'm also booked in for a new nerve ending/conducting test with extra tests involving muscles being stabbed, I can't remember what they are called.
I have now had two weeks off from the physio and I will not say that I feel better or it has become better. I will still keep doing the stretches she gave me to do, since they are loosening my back up, which she and I could clearly feel was different between the first and third session. I still wake up 1-2 times a night with numb pins and needles in my arms, though not as bad as it was a year ago. When tired or I've done hard work it comes back more painful than normal, tiredness from using a tool or holding an arm in different position for long periods lingers around for 2-3 days longer than normal. Over the last 1-2 months, I feel on bad days that my strength is disappearing and I fear that I do not have a good enough grip of the tools that I'm using. You know when you are turning a bolt and just want to give that little nudge, I can't.
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Oh today it is a years anniversary since we had to stop touring because of this - hurray ...
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between #6 and #7, if I'm counting right, there is a disc poking out, which could be causing the pressing on the nerves.
Certainly does look as if it is causing a narrowing or at least pushing into the canal there. Hopefully this is the beginning of the road to a solution.
Is that a winter insulating layer I can see there?
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Oi are you saying I'm fat :)
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Oh here is proof that I do have one - though the question still remains do I use it :)
(http://www.woollypigs.com/photos/MRI_head_1.jpg)
(http://www.woollypigs.com/photos/MRI_head_2.jpg)
(http://www.woollypigs.com/photos/MRI_head_3.jpg)
(http://www.woollypigs.com/photos/MRI_head_4.jpg)
(http://www.woollypigs.com/photos/MRI_head_5.jpg)
(http://www.woollypigs.com/photos/MRI_head_6.jpg)
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What a lovely brane!
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Every time I see one of those side-on brain scans I look for the donuts and the she-nani-goats :)
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MRI scans are cool as feck...
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Oi are you saying I'm fat :)
Think of it as an adaptation :)
Only kidding - almost all of us have at least some lard.
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So since I haven't heard anything, I called the hospital. Who could tell me that there is a letter on its way to me. This letter should tell me that I'm booked in for another MRI scan. Though the hospital could not tell me when that will happen, as that letter has not been send out.
So are we in for another four weeks wait before I know when I go in, with another four weeks wait until I get scanned. That would pretty much take me to a year since I was booked in for the first MRI scan.
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Woolly are you sure you were not bitten by some Amazonian grot spitting spider or some such? Has your doc spoken to the National?
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hehe it could be anything, the only one who got bitten by something that didn't look like a mossie was Peli :)
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Just picked myself up from the floor as I fell off the chair laughing.
Next MRI scan is booked in
on
the
3rd
of
April
2014, only 3 weeks short of a full year since the last one.
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That's a hell of a long wait considering they missed a slipped disc on the first MRI ....
Good luck Woolly! :D
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I might come down to you Feline to get the op, it will be faster than NHS :)
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Just got the letter from the neurologist, funny after the appointment letters. He and consultant radiologist agree that a MRI scan of my Brachial plexus is justified.
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MRI scans are cool as feck...
+1
I wish I had been able to get copies of the MRI scan I had. The slice showing an ink blot that had previously been a disc was interesting.
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I got a letter from the neurologist and he agreed with the radiologist that my Brachial plexus need another MRI scanning - that will happen in April.
From wiki : The brachial plexus is a network of nerve fibers, running from the spine, formed by the ventral rami of the lower four cervical and first thoracic nerve roots (C5-C8, T1). It proceeds through the neck, the axilla (armpit region), and into the arm. It is a network of nerves passing through the cervico-axillary canal to reach axilla and innervates brachium (upper arm), antebrachium (forearm) and hand.
http://en.wikipedia.org/wiki/Brachial_plexus
http://en.wikipedia.org/wiki/Brachial_plexus_injury
Pretty much tick, tick, tick regarding to symptoms, where the pain is and how my arms and hands feel etc.
Fall from motorcycle, trees etc can cause this. In some cases, these injuries can cause total and irreversible paralysis, limit use of these limbs and cause pain
and so I could go on. Looks like that surgery and physio can sure this but it would take a long time.
I'm thinking the wonderful fall of my bike in the 100mph sandstorm in Patagonia, but why it took around 8 months before I stared to feel anything I don't know.
Well I will have to wait until April before we can confirm this...
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I might come down to you Feline to get the op, it will be faster than NHS :)
Please, please, let her do it in the Grain Barge on a YACF pub night! We'll keep you suitably anaesthetised! ;D
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If you pick up the bill, mine's an ale :)
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Update: the MRI scan will be on 18 of Jan off the neck and shoulders. So the meeting in early April is to chat about the scan.
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When I was getting electrocuted* on Tuesday I noticed a letter to me and my GP, which I haven't seen. All the other letters I got were about my next appointments and I could see that they had been cc'ed to my GP. I could see it was a letter from the neurologist, and there was some talk about problems with the C5 and T1 somewhere. I asked the nurse if I could see it, since it was addressed to me, but she said that she could not allow me that.
I called my GP and was told that my blood test was just fine, all the levels were OK and I didn't have Lyme disease either, funny that I never was told about these results. The letter that I didn't get said that I was booked in for another MRI scan and that the neurologist thinks that it might be damage to my brachial plexus.
* Yes electrocuted I was! I had the same test back in April and the lovely nurse was very kind to slowly upped the voltage, on the wires were attached to me fingers and various points on my arm. When my fingers were just about jumping, a little bit more than a jumping nerve next to your eye would jump, she stopped. But Tuesday's it was Frankenstein's nurse time at the torture machine and she was more used to turn the voltage up to 11 and tried numerous times to reanimate me, even if I was sitting next to her and very much alive. I was jumping and jerking around on the seat and once or twice I even yelped, it took some will power not to just pull the arm away from her and the wires. It took around six hours to get back to normal after, I wouldn't say I was buzzing. I was knackered.
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Oh, I HATE it when they won't show you YOUR damned records.
Reminds me I need to email the ICO and find out if $hospital are right in not sending me a copy of a scan they have on file claiming they don't have to having charged me £20 for a CD which I expected to contain said scan...
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You can apply in writing to see your records in full, they are not allowed to deny you this. Personally I would ask to see that letter, it may show that they are fully aware they missed something from the original MRI and are not being totally up front with you about it. :-\
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Second MRI scan done, I was there before the nurses this am. The radiologist told me that she couldn't see anything different on today's scan and the one I had in April 2013. Now the two and a half month wait until I see the doctor to talk about the scan results.
Oh look is that a glacier zooming past?
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Just back from the last meeting with the specialist, it is not brachial plexus as the MRI scan showed nothing afoot. The motor nerve conduction study e.g. the my electrocution, showed that a moderately severe left Carpal Tunnel Syndrome but it does not explain the rest of my problems so he was pretty sure that it came from else where in the body and not my hands.
So I will be booked in for yet another test, thoracic outlet syndrome aka TOS, after some nagging the specialist agreed to mark the request as urgent, though he didn't hold any hope for any speed up. He would also try to get an other specialist, in the TOS area, at the Yorkshire Clinic to have a look at me, but again he didn't know when that would happen.
When asked what I could do now the specialist went "hmmm, couldn't hurt" to pilates and swimming, to physio he said it wouldn't help. We also asked if he thinks complaining would help speed things up, since he couldn't say how much it would speed up the test, marking the test urgent. He said that the powers that be would normally jump on it if there was a complaint, so we will put fingers to keyboard this evening. Going private he said would be wasting our money and wouldn't be that much faster or get a better result, since it is the same doctors for NHS and private.
The specialist said that I could try Gabapentin for the pain, but reading up about it, it sounds no better than the Amitriptyline when it comes to the side effects. If I reacted so much to mild antibiotic, I'm not touching this.
So the waiting game continues ... In the mean time I can't ride my bike or work full time.
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Oh bugger. When I saw you'd added to the thread, I was hoping to see a report of how you're out riding again. Hope things move on.
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Yes, sorry it's dragging on so long.
I don't know about the private comment - over in Harrogate it seems to be same doctors more immediate appointment. Having said that, we have by and large been well cared for thus far by the local NHS.
I'm planning a ride over to Skipton one Saturday or Sunday morning in the next few weeks if you want to meet for a coffee. Will be visiting Hetties at the top of the High Street.
Mike
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Ugh, sympathies. Complaining does sadly sound like a plan, emphasis inability to work properly and major impact on day to day lives. The fact this has been dragging on with months between each stage is now getting very silly.
I agree re gaba-watsits. I don't like amitriptyline's effects so I too have avoided pregabalin and gabapentin (often people try one then the other) despite stupid pain. The issue is my pain has a cause, it's a stupidly dislocatey shoulder which I need to do more physio on, and not use much cos using == dislocation (forms at shoulder hosp asked how many times per day 1-10, I added 100 and 1000 - they got the point quickly at that point).
Hope a complaint gets you a test quickly!
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Just got off the phone with the complaint department. They are fairly happy with the time scale between my 2xMRI, 2xnerve studies etc .
You wait to get the appointment and then wait to go to that appointment, which is normal.
Yes there had been one cancellation and a four month wait between two appointments. Sadly nothing can be done to speed things up on their side, since I have now been referred to another NHS trust. Might write and ask for a speed up at that trust, just hope that it wouldn't put a spanner in the works.
They kept saying that they understand that it "feels like a long time" for me. No, no - it does not "feel" like a long time, it is a long time.
Complaint and investigation into how long this is taking has been logged and will take up to 40 days to get a reply back.
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Going private he said would be wasting our money and wouldn't be that much faster
I doubt that very much. There is no health insurance company, self-paying patient, or patient paying insurance premiums who would put up with that length of wait. It might entail going to a different location to have the imaging done but it would be done pretty quickly. 4 month waits for private patients? No way.
Interpretation of the images would be done by the same medical staff as for the NHS patients, so that bit is correct, but you would usually have more personal consultant input and, of course, timely sending out of reports etc.
I hope that, despite the discouraging early signs, that your complaint will have an effect. If not, just escalate it.
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Going private he said would be wasting our money and wouldn't be that much faster
I doubt that very much. There is no health insurance company, self-paying patient, or patient paying insurance premiums who would put up with that length of wait. It might entail going to a different location to have the imaging done but it would be done pretty quickly. 4 month waits for private patients? No way.
Interpretation of the images would be done by the same medical staff as for the NHS patients, so that bit is correct, but you would usually have more personal consultant input and, of course, timely sending out of reports etc.
I hope that, despite the discouraging early signs, that your complaint will have an effect. If not, just escalate it.
Yesterday's consultant said that going private would be "a waste of money at this stage of the process." We don't really have the spare funds to go private, in any case.
The complaint was to the Chief Executive of the Trust so I'm not clear how we could escalate it further?
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The CE cannot just dismiss your complaint. If it is not resolved to your satisfaction, there will be further discussions. If still not happy: Health Service Ombudsman? MP? Others will have experience and better advice.
But wait and see what happens now that this has been referred to another Trust. Hopefully they will do better.
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Seeing as it happened while traveling, might insurance cover private medical care?
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I don't think so and the insurance has elabsed now anyway.
The speed the complaint compartment work at is slightly different to the test of the NHS. Send the email Thursday, call back Friday, letter confirming arrived Tuesday, answer should arrive before the 14 of May.
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Just called around to find out where my appointment is in the system. Letter left the last doctor's desk on the 7th at the latest and the two doctors who I have been referred too have yet to receive the paper works.
The two locations are only 8 or so miles apart ... ::-)
From what I understood from the temp secretary at one of the doctors, referrals goes to a central location and then sent out to the doctors, and there is a good chance that there would be a bottle neck there.
Will call back next week, trying to keep them on their toes.
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Got a letter from the specialist who I saw on the 3 April with an follow up appointment on the 24 August. So I can see that the specialist have faith in the "urgent" marking he put on my referrals.
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Well that was interesting two weeks:
After a few months of not much work the season finally kicked in and my hours went up and so did the pain. I worked a few days, one day off then two days on, I came home utterly spend after that. Woke up with a very swollen left hand and somewhat swollen right hand. Not the old shooting funny bone pain, but a very numb and sore - you know the pain the day after you dug up the garden in the spring, running the first time in a long time, removing wall paper and paint a room - but by 10 fold. I tried to sweep the garden and I couldn't even hold the broom, let alone do the movement. Doing small things, picking up screws etc was just painful and extremely hard. So ended up just sitting for a few days doing nowt. The pain/issue moved from my arms to my upper back then down the the back. It took three days to really feel right again, ok for others it might be very painful but I do have a high pain threshold and have now become used to it.
Lucky I had Easter off, sadly three of these days was a no go, because of me. I went back to work and did three more days this week just gone. First day was only a half day since I had an appointment with the GP* and **. At the end of the half day I struggled with holding a pen to write down job cards. After the second, full, day I was utterly spend, my whole body was done for, I clearly use other parts of my body to compensate. Peli put me on full rest when arrived at home and was given a beer, water and food along with an early night. I just got up after a long kip - I'm not as broken as last week but had equally swollen hands and numb pains in arms, my back and legs well tired too. Yes it would be that I haven't worked much for a while, though I think most of it is because of what ever I suffer.
*) After getting the letter about the follow up in five months time and have tried to call around to find out where/when my referral date are, I decided that it was time to nag people eg. more calling, hunting up appointments.
**) I was hoping that the GP could help with speeding things up or had another idea of what it could be. Sadly the GP didn't have my details yet, just moved them over and was pretty sure that it was something to do with the nerves.
As I was relaying my story to the GP I started to cry, this is the very first time I had done this, and I must have retold my story more than 20 times now.
The last two days Peli and I have been ringing around the houses to find out where my referral, three weeks down the line, is and yet to find it. One party says it has been send out and the other says never seen it. We are thinking about going to my local MP to see if this can stir/speed things up. Along with writing a "pleading" letter to the new doctors I have been referred to. Sadly I have now been referred to another NHS trust, whom we really can't complain about yet.
Sadly stuck in a rocky hard place here, gotta work need the cash, can't work full time (not really looking forward to when the season really kicks in), not sure if it is a good idea to work - or even doing yoga, pilates or swiming - because am I doing permanent damage here or not.
The GP even asked as a side note, if I had access to another country's health care system - sadly no the previous Danish government took care of that since I haven't been around for over 18 years.
Hopefully the GP will have my papers early next week, will call Monday to find out, and he can figure out what is what.
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Bloody hell Woolly, that sounds just awful. Here's hoping things get sorted soon and they fix you up.
The GP even asked as a side note, if I had access to another country's health care system
:o and :-\
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Peli can you not get referred to the National Queens Square? Sounds very much their kind of thing.
The National Hospital for Neurology and Neurosurgery (NHNN), Queen Square, is the UK's largest dedicated neurological and neurosurgical hospital. Celebrating 150 years this year, it provides comprehensive services for the diagnosis, treatment and care of all conditions that affect the brain, spinal cord, peripheral nervous system and muscles. Services include specialist neurosurgery, a brain tumour unit, the Hyper-acute Stroke Unit (HASU), an acute brain injury unit, the National Prion Clinic, a pioneering neuro-rehabilitation unit, the UK's first interventional MRI scanner, the largest specialised neurosurgical ITU and the only neuromedical ITU in the country. Together with its neighbour, the Institute of Neurology, it is a major international centre for research and training
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I don't know, Canardly, how we would even go about that. Getting referred to anyone, even locally, well... it's not been easy. When we asked the most recent consultant what the next step would be, he seemed very unsure about where to send Woolly for further investigations (and said it would be a waste of money to go private). The referral letter he wrote to a specialist in a different Trust has now gone missing, despite a formal complaint to the Trust Chief Executive. We feel very trapped and helpless.
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Wooly and Peli
I really feel for you. The NHS can be so frustrating when it doesn't work and you feel you are banging your head against a brick wall of uncaring bureaucracy.
I'm not sure that private is no use - you may see the same person more quickly and may get a quicker referral. Of course, it costs money.
There is a physio in Harrogate who was great with our daughter when she had a hip injury - he had her in for an MRI to eliminate Perthes in 24 hours and then when he was happy she was OK dealt with the underlying. Whilst I don't think he'd fix you, he might know who to refer to? PM me if you'd like his number.
In any case, do keep chasing and keeping yourself at the front of their list.
Mike
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Thanks Mike, I have been thinking about another physio who does the SKY team, Tour de France and the paralympics, that a customer has talked about, just to see if there is anything s/he can think off. We have also been thinking about going in and camp out the the waiting room, just so that they know I'm ready and don't need to call me if they get a cancellation.
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Just learnt that the letter that was marked "urgent" and that we were told would be in the post by the 7th of April, is going to be posted today or tomorrow. Hmm that only took one complaint letter, a follow up complaint letter and a handful of phone calls to learn.
Oh is that a brick wall over there ---> I'll be right back.
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Oh remember that wall I found earlier, I will be visiting that same wall again today.
After - and I repeat myself here - "one complaint letter, a follow up complaint letter and a handful of phone calls to learn", I get a phone call today from the secretary of the doctor I've been referred to, who told me that a fax was sent over yesterday and if I want to go private it will cost and I can't got back to NHS.
AND that I have to have a referral from my GP, not the specialist who we had already had a referral from, and have spent a lot of time in the last three weeks to get to send out the referral.
WHY didn't anyone tell us this nearly four weeks ago!?!?!
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Just got a copy of the referral letter:
Got my name right - No tick
Got my address right - No tick
Well written - No tick
Got my GP to write a referral letter hopefully it will go out tomorrow.
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Let's hope this starts you on the mend. I would like to say unbelievable, but unfortunately it all only to believable.
Mike
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Entirely unsurprised. Can you exhaust the hospital complaint process and escalate to whoever externally watches the NHS?
You can totes go back to NHS after doing private. I've done it. It's just up to the doc in question which given the fuckery you've been subject to can be the "how to make this complaint go away" part of your complaint.
I hope your private referral is a lot more sensible than the NHS to date. >:(
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Oh yes we will complain even more for sure.
Sadly we can't afford paying for private, so hopefully calling then often and keeping them on their toes regarding the complaint will speed it up.
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Quite: "If you constantly lie and behave like idiots, we will treat you ALL like idiots until we get what we need"
Sorry to hear you still have grind through the NHS. :/
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Sadly, because Woolly is leaving an NHS Trust as an NHS referral to a private hospital, the complaints process is limited to the first NHS Trust and so there is little complaining we can do at this stage beyond the farcical referral mess.
It seems utterly incredible that a consultant also working at the private hospital to which he is referring a patient would not know the referral process from one hospital to the other. We could be a month down the waiting list for the private place had he told us a simple GP referral was the only thing needed.
And why the original consultant, as a neuro specialist, can't do the further tests himself beats me. Although, the fact that he himself writes letters of complaint to this Trust about shortage of staff and support might have something to do with it...
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It seems utterly incredible that a consultant also working at the private hospital to which he is referring a patient would not know the referral process from one hospital to the other.
No it doesn't. There are various flavours of consultant, with the old-school that's-what-secretaries-are-for type being gradually phased out as they retire, but the geek-with-no-respect-for-the-system type are alive and well (thankfully, they tend to be the best medics, even if they do naively apply common sense to NHS protocol from time to time).
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Hmm now that is a funny system.
Called, Thursday, my GP to get me a referral sorted out to the new specialist. Called, Friday, to double check that the referral was going out. Got a letter, Tuesday, from my GP asking me to login and book myself in for a date.
Why the flip - and some other very strong words, including a trip to that nice wall I told you about before - couldn't/isn't/wasn't this system available to my last specialist !!!
It took me 2min to login, find a date, first one there, 21st of May, and click the "click here to book the appointment" button !!!
Anywhoo not sure whom I going to see at the new clinic since there were no names, other than my GP's and mine.
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Good news : You know that wall I have been working on, I have now managed to knock my way through it.
Bad news : You guessed it there is another concrete titanium-reinforced 12 feet thick Dictator bunker style wall behind it.
I had to use the Choose and Book thing, brilliant bit of kit, 2min flat to do a booking. Though nowhere was it marked that I got to see the doctor I was referred to. So I called the clinic to just double check who I was going to meet. Oh it is Dr A, which is nice and very convenient because that was the doctor who referred me from the NHS!
arrgggghhhh
So I asked can I change it, no you don't get to pick the doctor. So I explained that Dr A referred me to Dr B because Dr A wasn't sure what is what. And was told to change the appointment online only to find that there are two 8:30am on the 24th slots open at the clinic - so we are still awaiting to see who the doctor I will see ...
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Aaaaargh! Sorry.
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Yup I think the key word here is AAAAARRGGHH!!!
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If you aren't down for Dr. B. at this next point, escalate the call to a manager and inform them that you aren't getting off the phone until *someone* gets you in to see Dr. B. so they can just keep escalating until you have a Dr. B. appointment or you will be writing a very stiffly worded complaint against the trust for an obstructive booking system which is wasting NHS resources.
You could also wrangle the name of Dr. B's secretary out of them if possible, phone (probably her) up and ask if she can help - be very very nice, they usually will help if they can.
Or just shoot them all in a rampage after all this fail.
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or you will be writing a very stiffly worded complaint against the trust for an obstructive booking system which is wasting NHS resources.
We've already written three formal complaints to the Chief Executive of the Trust for which Dr A works. It hasn't helped so far, sadly. We will receive a formal response within a month, or so they say.
Dr B is in a different Trust and to add an extra level of complication, the referral is to Dr B at his private clinic (The Yorkshire Clinic) as an NHS-funded patient, funding which required the referral from Woolly's GP, via the NHS Choose and Book system. Which, incidentally, as has just been announced (http://www.theguardian.com/society/2014/may/10/nhs-online-choose-and-book-system-scrapped) is being scrapped. And as we have only just begun involvement with the private clinic, we can't complain to them, as none of this has been their fault at all.
::-)
Woolly managed to push the receptionist at the private clinic to let him know what days Dr B works, so that he could then choose an appointment on one of those days. So, we *think* he now has an appointment with Dr B.
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Oh joy got a letter from PALs regarding our complaint saying - we are ever so sorry but we can't give you a reply in time it should be in your hands by mid June.
Been booked in for an other electrocution erm nerve conduction study, my third. The idea is that the next doctor/specialist I'm going to see, will have a up to date result and not a five month old one in his hands. Though I really don't think I get to go before the next appointment since I haven't heard anything other than my GP has send it out.
More calling about me thinks.
Been trying to summarise what is going on and how the pain and symptoms are doing.
November/December 2012 - October/November 2013
Severe numbness, pins and needles, pain like hitting my funny bone shooting from fingertips to shoulders. Any vibration causes pain to flare up. Can't for a few hours in the morning make a fist without extreme pain and using all my muscles and strength. Can see I am holding a glass of water but can't feel if I have applied enough strength to lift the glass.
September 2013 - March 2014
Numbness and pins and needles less than before but still painful. Fear of lack of grip. Don't have the last turning 'oomph' to tighten things, e.g. bolts. Not sure I am holding tools or objects enough to use them or lift them. Can feel sharp pain at joint points: wrists, elbows, shoulders, where nerves go, but not really pain in muscles.
March 2014 - present day
Numbness and pins and needles slightly less. Extreme exhaustion. Totally drained for a couple of days after work. Have to think about breathing when tired, the upper chest is constrained but not wheezy. Physically and mentally drained. Had "micro-goosebumps" -- fine static tingles, not visible -- coming from my arms, going up to head and down my back. Starts in the elbow and goes upwards. Hot flushes with goosebumps and I feel dizzy and extremely exhausted and it is draining mentally to concentrate or do things. Aching coming from arms, to neck, running down back and into legs over a day or two. I have to really concentrate to be able to move my limbs. Wave of muscle exhaustion passing from arms to neck to back. Swollen fingers and hands in the morning that takes hours to go down.
Hmm symptoms are changing, is that because I work, good or bad, am I creating perment damage?
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Still thinking of you.
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It finally clicked where I have seen this saga - getting a referral - before. Anyone who knows about Asterix and the twelve tasks he is set and especially the one where he is asked to get Permit A 38 in "The Place That Sends You Mad". Here is a youtube linky (https://www.youtube.com/watch?v=JtEkUmYecnk), the "album" version is so much better than the cartoon version, well how I remember it from nearly 30 years ago anyway.
The last weekend was "entertaining" -- utterly spent after two and a half days work. I was not much use on Saturday and just a little bit better on Sunday. I spent most of the time like a zombie and slept a lot, as that was just about what I had enough energy to do. The pain, the using other parts of my body than normal, along with having to concentrate so much to be able to do simple tasks, just drains me. Even wiping me bum is an endurance.
We have now learnt from various people that the neurology department at Airedale isn't the best. Good news is that the doctor I'm goingwas to meet on Saturday has better feedback than the hospital.
Oh yes there is more ...
AAAARRRGGHH!!!!!
Remember the Choose & Book thing where I can't get to pick the doctor I want to see? Where I could see two appointments on the 24th and was told to just pick one and you'll get the doctor you want. Well, since we didn't get a letter to confirm the date, I called today to check. Yes, the letter was sent out on 9th, no I haven't got it, and you are booked in with a different doctor to the one I was originally referred to, all those many weeks ago. So after some more nagging/begging I got the person on the phone to book me in on 7th June with, hopefully, the doctor we have been trying to get referred to for a month and a half.
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The pain, the using other parts of my body than normal, along with having to concentrate so much to be able to do simple tasks, just drains me. Even wiping me bum is an endurance.
Make sure you tell the medics that, in those terms.
Interfering with basic personal care is the sort of thing that gets you taken seriously.
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Get Pelli to take notes of every single little daily care and living task you cannot do without pain, fatigue, side effects, as often as you need and to an acceptable standard... I find listing a whole fuckload of that sort of stuff scares them, my physio laughed at "can't hoover" but went "ohshit" when I said I could no longer convey food to my mouth without pain and often eat with my hands cos it's easier and hurts less.
Fingers crossed this doc has some ideas and is able to get you sorted ASAP. Sending you huge sympathies cos this sort of nonsense is exhausting!
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Thanks all !
I think one of the reasons why I have felt so crap over the last bad episodes, is that it has finally hit me that I haven't been on a bike since Dec 2012, and that it is also dragging Peli down too. Along with the fact there is no cure in sight.
Though the other week while idly clicking about on the 'tinerweb I found two horoscopes for 2014. Both said that my long lasting health problems would get sorted by late December 2014 and one of them said that my health problem started in Dec 2012. So lets see if the NHS can beat the stars :)
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Just back from the GP, went there to see if they could shed a light on the saga. GP was surprised that I got my appointment so fast, didn't blink to the fact that we had to complain, call every 2-3 days, correct errors etc to get an appointment with the right doctor.
GP wanted to give me drugs for the pain, the same one I have tried before and we talked about here, I felt worse on the drugs after one pill than I do without.
Wasn't interested in my updated notes, where I summed up my symptoms as they have changed over the last year and a half.
And also wanted to give me drugs/sessions for depression...
Figure out what is wrong with me, don't shrug your shoulders while going "I dunno", cure if there is a cure or just managed it and I will be happy and therefore don't need drugs/sessions for depression.
And when has GP's started to say this - What do you want me to do? That question is just so depressing, hope killing and frustrating. I'm the sick one, not a doctor, I come to you, the GP, in hope that you can figure out what is making me sick and then cure me. A bit like when you ask a plumber to help you when your toilet stopped flushing, not a shoe sale person.
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Boo :( what did you say when he asked what you wanted (send me to someone useful, I hope!)
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I really tried but it is so hard not to answer in a narky way or just simply breakdown when asked that question. The top ten answers that springs to mind mostly includes shouting and banned words. Though I think I managed to ask/tell the GP I would very much like to get cured, in a nice way. The answer to that was let's wait until I meet the next neurologist, you were lucky to get in this fast, ignoring that we had to work hard to get it right in the first/second/third place.
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Fingers cross you get to see someone useful soon. I'm sure you're utterly miserable.
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Last Friday we went to see the local MP and his pet Tory-boy researcher about the Airedale thing. MP was reasonably nice but clearly didn't have much time for us, and we felt rushed. He agreed to write letters to Airedale ("Oh yes, I'll write to Bridget, I'll write to Bridget" -- name-dropping a-go-go) and to Dr B. When we raised the fact that I'm struggling to work and mentioned that it doesn't appear I'm entitled to benefits on a zero hours contract, he and his researcher visibly recoiled when mentioning benefits and were not keen to discuss this at all. He referred us to the "excellent DWP website" and all but chucked us out at that point.
So we are awaiting replies from the MP, as we have asked him to send a copy of his letters to us, and hospital etc.
Today I got a letter postmarked the 24th of May, telling me that their record shows I had an appointment with them but it has now been cancelled - yes that happened on the 9th of May when I called the clinic to check on my appointments and found out that I had been booked in with a different doctor.
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Ugh at MP. Excellent DWP website? What is he smoking? In fact what are they all smoking?
Even when you "try not to be a benefit scrounger" they don't wanna know >:(
Sorry to hear hospital admin continues to be a pile of fail.
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The MP also refused to send us copies of the letters he is writing on Woolly's behalf. I have sent a stern follow-up email to his senior researcher asking to see copies of all correspondence relating to this case, or else.
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Woolly,
Don't mean this to sound harsh but I wonder if what the GP just cannot quite bring themselves to say is "I can't do anything for you"? Likewise the specialist you've seen so far?
Unfortunately, the correct answer is sometimes "can't work out what's causing it, sorry". And that's a difficult thing for patient and doctor to say.
What antidepressant and what dose? Certain antidepressants at low dose actually make a real difference to night pain in particular; actually one of the few treatments in chronic pain that has a good evidence base.
(Usual caveat applies - I haven't seen you, you haven't asked for my advice and this isn't really my field anyway, so tell me to bugger off if I'm out of line!)
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Not out of line at all, closetleftie.
If only they would tell me that they haven't the funkiest - right now I live in limbo and in hope that there is a cure. I really do feel there there is more to be discovered but the admin and waiting time is just dragging on and on and the symptoms are changing.
I was on 10ml of Amitriptyline which send me right doolally after just on pill. Up thread Barakta talks about alternatives but if I react to paracetamol and mild antibiotics as I do they don't sound any better than the amitriptyline.
Oh forgot still awaits letters about the two other appointments, the second one that I had to change since they still send me to the wrong doctor, which I cancelled and then re-booked hopefully with the right doctor. The secretary was sick today so the cover couldn't confirm the appointment.
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OK, Ami at the sort of dose you describe is effectively a painkiller rather than antidepressant. But if you go bonkers from it there is little point in trying it again.
YHPM
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Just got a letter from the The Appointments Line reminding me to book my appointment, still no confirmation letter regarding my appointment on the 7th. When I login to the Choose and Book site I'm told to contact my GP to get another appointment.
My MP has written back to confirm that they will send out the letters we asked for. Though it sounds like we are not going to get a copy, even if we asked for one when we meet and when we emailed a little reminder last week.
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Hopeless!
DPA your MP? Strange that they won't automatically include you in letters. What's that about?
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Things afoot.
Got a call from my GP asking for my verbal agreement to release my medical notes to be read by a review board. (though not 100% sure what this review board was called, was a bit asleep at the time of the call).
I went to my appointment at the Yorkshire Clinic today and I did have an appointment with the right doctor, even with the lack of confirmation letter.
It was great to talk to a person who seemed to listen to what I said and someone who was catching the ball and not shrugging their shoulders and going, "I dunno." He even looked at my written list of my symptoms and the DVD of my first MRI which I'd taken with me. He will get in touch with my GP and the people who will do my next nerve test and my asthma test and double check my second MRI.
It is clear that it is not MS, ulna nerve damage or carpel tunnel damage. Though he too was baffled to what it could be, he said it might be time to change direction and look elsewhere like tropical diseases or if it is swollen joints (I forgot the real name for this).
He said that I really didn't want want to be told that I had something wrong with my nerves. When I told him I just wanted to know what is going on, since many people are having a good life - well, as good as they can - with various serious aliments.
He said it might be time to take drugs, but with my history about being intolerant to drugs, that wouldn't be a good idea [woot, woot! He listened to what I said about 30 minutes ago!!].
So two more tests to come and then he will get back to me, even double checked my phone number and email address. If he can't figure out what is what then I should get my GP to refer me, the question is to whom?
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It might sound defeatist but I would suggest a pain specialist.
Your pain is very limiting for all the things you want in life; if you can get on top of your pain, you can get on top of your LIFE!
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It sounds as though you might have found a hole in that wall of yours. Good luck!
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Thanks, Helly: today's doctor suggested that pain medication plus exercise might be the way to manage the condition, in the absence of a diagnosis. But, he also acknowledged that finding the right pain medication will be very difficult given Woolly's extreme sensitivity to drugs. A couple of paracetamol send him to sleep for the day. Antibiotics leave him drowsy, dizzy, wobbly on his feet and slurring his words. Anything stronger and he is simply unrecognisable and unable to function.
As the condition appears to have been caused by cycling, Woolly is very reluctant to simply mask the pain with medication and return to activities which might make things even worse.
The GP won't refer him to more than one specialist at a time, in any case. We'll see how the next two tests go and take it from there.
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Sometimes TENS works for pain, without drugs.
Complex Regional Pain Syndrome is complex!
All this is WAY beyond by knowledge though.
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Thanks Helly. It is a complex area. I think of his symptoms, Woolly can cope with the pain. He struggles mostly with the numbness in and lack of grip from his hands (goodbye posh Denby bowls), hot flushes, constrained breathing and feelings of complete exhaustion, especially after a day stood up mending bikes.
At least today's doc showed some empathy and seemed to be trying to find a solution.
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As the condition appears to have been caused by cycling, Woolly is very reluctant to simply mask the pain with medication and return to activities which might make things even worse.
Won't happen. Inactivity is what does the damage in long-term pain. Truly.
Good luck.
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Thanks CL.
To explore that further: say I had long-term knee pain caused by cycling, which persisted off the bike, would it be better to mask the pain and continue cycling in order to avoid inactivity... or choose another activity? Looking at the history of this condition - several months pulling a very heavy touring load on extremely rough roads, with Woolly's unusual, shoulders-quite-hunched cycling position and the way he put his body under immense strain every day, I am convinced that this has somehow caused the problem. What it is exactly, who knows? I can understand why he is afraid of cycling again, and the very few times he does (such as test riding bikes at the shop), he's very tense and uncertain about his position on the bike, for fear of doing more damage.
Woolly asked the doctor today about alternative exercise such as pilates, yoga, etc. The doctor said such activities wouldn't damage his nerves, but may very well exacerbate his symptoms -- which may be why other doctors have actually advised against doing them.
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Good to hear there's some movement at long last.
If you're interested we have a TENS unit that you could try out if we turn out to be in the area.
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Thank you, Ham! My mum has a TENS unit knocking around, unless she gave it to Age UK. It didn't work for her arthritis. I'll see if she's still got it so Woolly can try it out.
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Thanks CL.
To explore that further: say I had long-term knee pain caused by cycling, which persisted off the bike, would it be better to mask the pain and continue cycling in order to avoid inactivity... or choose another activity? Looking at the history of this condition - several months pulling a very heavy touring load on extremely rough roads, with Woolly's unusual, shoulders-quite-hunched cycling position and the way he put his body under immense strain every day, I am convinced that this has somehow caused the problem. What it is exactly, who knows? I can understand why he is afraid of cycling again, and the very few times he does (such as test riding bikes at the shop), he's very tense and uncertain about his position on the bike, for fear of doing more damage.
Woolly asked the doctor today about alternative exercise such as pilates, yoga, etc. The doctor said such activities wouldn't damage his nerves, but may very well exacerbate his symptoms -- which may be why other doctors have actually advised against doing them.
I don't know whether it's relevant, but I suffer quite severe arthritic pain in my ankle and foot as the result of a motorcycle accident some 18 years ago. If I'd withdrawn from exercise (running, mainly, back then), I'm pretty certain the condition would be worse than it is. I suffer quite badly the day after a lot of exercise (including cycling), but if I do nothing for a couple of weeks I get the pain without the benefit! I am fairly sure that if I didn't then get off my arse and do something, it wouldn't be too long before I was both seized up and in full-time serious pain. So, yes, I do believe that some gentle cycling on a light bike on flattish roads (or maybe something else - swimming?) may well be better than the alternative.
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Thanks CL.
To explore that further: say I had long-term knee pain caused by cycling, which persisted off the bike, would it be better to mask the pain and continue cycling in order to avoid inactivity... or choose another activity? Looking at the history of this condition - several months pulling a very heavy touring load on extremely rough roads, with Woolly's unusual, shoulders-quite-hunched cycling position and the way he put his body under immense strain every day, I am convinced that this has somehow caused the problem. What it is exactly, who knows? I can understand why he is afraid of cycling again, and the very few times he does (such as test riding bikes at the shop), he's very tense and uncertain about his position on the bike, for fear of doing more damage.
Woolly asked the doctor today about alternative exercise such as pilates, yoga, etc. The doctor said such activities wouldn't damage his nerves, but may very well exacerbate his symptoms -- which may be why other doctors have actually advised against doing them.
Depends. The human nervous system is quite "plastic" in the sense that it remodels as necessary. Sometimes, the nerves remodel to signal "danger!" and protect against an injury while it heals, but then for some reason (no one knows why) don't change back to signalling "healthy" once the primary injury is gone. In such a situation, there is no masking the pain, because the pain is now the problem. In such a situation, inactivity, muscle shortening, small degrees of joint stiffening etc. may occur and create a vicious cycle of weakness, fatigue (which of course is often painful; remember being knackered halfway up a col?) and further pain.
It is plausible that Woolly sustained an injury which healed, but the pain persists. This diagnosis hinges on excluding causes of ongoing damage. So it's good that he is seeing someone to do just that. If they can't find anything "wrong" that doesn't mean the pain isn't real, just that it is now the problem. If he overdoes the exercise, all he gets is pain; the meaning of pain (as alarm signal for damage) is lost.
In such circumstances, specific pain management treatment is the rational thing to start. There are various interventions which may be tried and can be very helpful, particularly when folk don't get on with pain medicines. As it happens this area has some bona fide experts in interventional pain management. Sanjeeva Gupta and Jon Richardson (also a cyclist) are the two names that spring to mind. Yoav OTP also does this kind of thing for a living. I'm not sure if he knows of this thread?
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Thanks TimC and CL: very useful thoughts and information.
The specialists in this case have been extremely reluctant to recommend any kind of exercise (I think one gave a half-hearted shrug to the idea of swimming at one point). When we've mentioned it in consultations they have given the distinct impression that Woolly should be resting. I recall that even the physios he saw were cautious in recommending any activity at all, other than a few daily exercises prescribed to stretch his lower back.
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Fair enough. I haven't seen him and it sounds as if (wiv' the tropical medicine referrals etc) the diagnosis of "no injury to find, the pain is now the problem" hasn't been made yet.
Having said that, whatever they have suggested, it clearly isn't working, so maybe the patient should take matters into his own hands..... :demon: :demon:
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I'm sure you're right. He's been trying to get a diagnosis since February 2013, his condition has developed new symptoms in the meantime, and life is generally pretty rubbish for him... so what he's been advised is not doing him any good. He'd be doing a lot more walking, actually, if our dog wasn't also an invalid! Sod's law. :-\
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I could be completely and utterly off track with this suggestion. But I have a friend who's partner suffers from fibromyalgia. A lot of the symptoms wooly is describing, particularly the exhaustion associated with the chronic pain, sound very similar to what he has. Has it been considered as a diagnosis?
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Thanks for thinking this way, more ideas please.
Looked at the NHS fibromyalgia page and I don't have many of the symptoms like lack of sleep, increased sensitivity to pain or muscle stiffness. I don't think this is it.
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1: Few weeks ago I was tuned into radio woollypigs at the hospital. One electrode strapped around my finger, the other a two inch long needle straight into my muscle. Sadly the music of my years was more like static than tunes. The doctor was much more gentle than the nurse I had the last time I was electrocuted and jumped around in the chair. He gently hold my hand and upped the amps so nothing worse than a jumping nerve near the eye. Now awaiting the report.
2: I called around on the 2 June to find out where my report was, nobody knew, my GP or the Yorkshire clinic, but the secretary at Airedale was very sure that she had send it out the very next day.
3: I was at the GP yesterday for a breathing test - 670 on the peak flow before drugs after 700. Not to report at all and papers hopefully will be send to the right places by today. Though the secretary at the GP said that they have received the paperworks on the 20th of July ...sigh...
4: Sunday I did 13 miles on my bike for the first time since last summer. I just had to since it was Le Tour De Yorkshire! Monday I was off work, Tuesday I was working, Wednesday and Thursday I was off work. Lets just day Tuesday was not fun and I was very glad that I had these days off. Today, Thursday, it is just about getting back to normal e.g. where I can happily do things without a constant reminder or have to really think about what I'm doing.
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PALs from Airedale called Friday letting me know that they are running late with their report, nearly two months behind now. Oh the irony ...
Well, the spot of wild swimming we did yesterday. Where I did a very gentle mix of breast strokes and backwards leg kicking, never got the hang of crawl. About a length split into three dips and no racing what so ever. Didn't do enough to feel tired today, as in sore muscles. Set it all off, started at the neck and shoulders in the late afternoon yesterday and after last night sleep it is in fingers, hand and arms. Arrggghh bother!
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You did a length of the River Aire? :o
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Tsk. Wharfe! (And no.)
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OK chaps, are you sitting down ?
OK now that we are all comfy, if you have tea in your hand, put it down somewhere safe.
I got a letter with an answer to things that have been going on. "So?" you ask? Well, I didn't ask for it, I didn't call around the houses many times to hunt down where said report is. I got it sent to me at speed too, posted Friday and I got it Monday. Shocking !!!
Anywhoo Dr. Busby has had a look at my MRI scans, both of them, read my nerve conduction study and my respiratory function test. Had a meeting with others to talk over my problems.
It looks like there aren't any trapped nerves in the C7/T1 area. There is some mild damage to the carpal tunnel on the left (no link to my symptoms), no evidence of any other peripheral nerve disorder.
So, as he said when we last talked, he has a feeling that we are reaching the end of what neurology can do for me.
But at least I am starting to get some definitive answers.
Oh, still sitting down? He booked me in for an appointment in the 23 August this year, yes this year and only four weeks away !!! Not 3-6 months away as others have been.
And on a side note I got my complaint response back, pretty much as we expected - everything is within the rules, waiting time guidelines and normal procedures. There was one mistake that they said sorry to and promised that they have rectified it now.
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Today I had my meeting with the doctor, the one who referred me on and booked this appointment for me way back in April. When I arrived I was told I was seeing another doctor, sigh, not the one I have been dealing with. But I managed to get the doctor I wanted.
He read the above mentioned letter from the doctor who he referred me to and said that he was at a loss as to what could be wrong with me, he really didn't know what to do next. He said that we/I should wait and see what Dr. Busby recommends on Saturday.
He was wondering if there could be a psychological reason to it: from what neurology has seen in up to 30% of the cases it is not nerve damage, it is the brain that says no. He was asking if I had stress or a bad time at home or at work or in the past.
I'm booked in with a physio next week, who specialises in cycling (he also does bike fitting) and has worked with Team Sky and the paralympics. Hopefully he would have an idea what to do next?
Sadly I think the next step for me is to start to take drugs/painkillers, though the doctor I saw today wasn't sure if it would really do anything for me.
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Woolly, I had no idea what a hard time you are having and I'm very sorry.
Peter
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On a weird side note: after more than three weeks with a bug that had settled in my ears and played around with my middle ear*. I went to the doctor and got some antibiotics for it. I honestly think this is the very first time I have taken antibiotics and as the Doc said it might do you "wonders". Which it did after the first pill stuff started to happen and after the second pill something was clearly afoot (see what I did there and it will be even more clear later ). Dizziness, pressure relief, cold etc in my jaw/teeth, behind my eyes, around my forehead and anything related to my ears - I just felt weird. I could feel the effect of the pill 15min after taking it and was riding on a "high" for one to two hours after. This massive effect went on for three days and I'm on the last of the antibiotics right now and these sinus related problems have calmed down, would not say that it has cleared 100% yet.
Here comes the weird part - the pain in my feet has gone from a 9.5 (out of ten = utterly agony pain) on a bad day to around 6.5 and good days it has dropped from 7.5-8 to 5. And the time the pain hangs around is only 10-15 min instead off 30min, if the pain stays like this I'm happy and could live with it.
I apologise for butting in on this thread but I am a surgeon with a specific interest in complex upper limb nerve pain, partly because I have problems with my own arms if I ride a wrongly set up bike and also because it is an interest of mine professionally.
The first thing I noticed with regard to your problems was the tiredness and the lower limb problems. I would agree that this tends to exclude discreet upper limb entrapment neuropathies but some things co-exist.
I was then struck by your description of the response to the antibiotics. This seemed to me to be a combination of two responses. Firstly a rapid severe adverse response. Then secondly a very significant improvement in your symptoms. Your later responses on this thread seemed to have concentrated on the adverse effect and not on the suggestion that the antibiotics may have helped.
I come late to your story and the information that you were in New Zealand when this started but were on a round the world journey. Hand you been in the USA or Europe previously and could you have been bitten without knowing it by a tick?
Your symptoms to me seem very much like a tick borne infection. These are notoriously difficult to diagnose and even after prolonged treatment may still leave problems. In addition the adverse effects are quite common with the start of antibiotics (Jarisch-Herxheimer Reaction).
The Lyme disease association has quite a good website and I note a letter in the BMJ from a GP in your area who had the disease and needed treatment. http://www.bmj.com/content/344/bmj.e3250/rr/591128 (http://www.bmj.com/content/344/bmj.e3250/rr/591128)
You might be able to contact her as a patient?
If anything in this rings a bell then I would certainly ask for a referral to the local infectious diseases unit in Leeds.
If you want to chat privately let me know.
Again apologies for butting in but this is the sort of line I would be going along.
Chris
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Now why didn't I think of that?
There again, it reinforces my line of
"If you can't get to the bottom of a problem, get someone knowledgeable with a fresh mind to start at the beginning..."
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Chris thanks for butting in, the main reason for this thread is to keep track of what is going on and happening. And also in hope - as Helly said - that someone knowledgeable with a fresh mind to start at the beginning would but in.
I have had a blood test for Lyme and got the clear for that and I'm pretty sure I never been bitten by a tick. Though other funny things could have bitten me over the year we were away. We have talked about if this could be some funny disease, but we had all the jabs and then some, along with not going to high risk areas.
My feet cleared up after 2-3 days on the antibiotics and now over a year later, they are only hurting when I'm tired after a full days work(on my feet all day). I didn't feel my problems with my arms got any better doing the course of antibiotics. But reading that article she was on more and for much longer than me.
Dr Busby whom I saw today confirmed what he wrote in the letter, that we have come to the end of tests regarding neurology. He is pretty sure that it is not psychological and agree with Dr Kunc that it is good idea to have a blood test for rheumatoid arthritis and other rheumatology things, sadly can't read his notes on the blood test.
Dr Busby said by all means go and see the physio as it might help. He also think that it is also fatique I'm suffering from, which sadly isn't really understood. As tired as I feel after a day or two work, fatigue is a great description. Along with the pain, like day day after the first long ride in a long time, that drains me and "travel" through my body from hands to legs. I'm utterly drained and the thought of doing simple things like washing up or making a sandwich drains me.
He also talked about trying Gabapentin which he said would work different to Amitriptyline. But how I felt on that and along with what Barakta said I'm not too keep on that. Though I might sign up to meet a pain specialist to see what they say.
I'll let the vampires take the blood next week and book in to see my GP to see if I can get referred to the infectious diseases unit in Leeds. Also if it possible to contact the doctor in that link you send.
Many thanks for butting in.
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Thanks for the long reply. It is interesting that your feet settled with the antibiotics and then never came back.
Fatigue is not commonly a factor in the upper limb compression syndromes although it can occur secondary to the constant aching and pins and needles. I would therefore discount the oddities such as thoracic outlet syndrome, although it is always a possibility and relatively easy to exclude.
You say that you never remember a tick bite but remember that the nymphal stage is only about the size of a poppy seed and they commonly attach around the ankles as you walk in grass.
The serology test are quite specific but I am not sure about the sensitivity. Also ticks can transmit a variety of other bacteria which cause odd symptoms and for which we have little in the way of diagnostic testing.
I would prepare a list of all the places you visited in the 6 months prior to the onset of symptoms. I would emphasise that you were rough cycling over tracks, and I presume at least some of the time rough camping?
I also note the nerve conduction studies in your left wrist for carpal tunnel syndrome. Your upper limb pins and needles could certainly be carpal and cubital tunnel syndrome and the positive nerve conduction studies is a useful pointer. Nerve conduction studies confirm CTS but the absence of positive tests does not exclude the diagnosis. NCS are very specific but very insensitive.
On a particular hobby horse of mine, you could ask for a Vitamin B12 test. We have a number of patients with low normal levels who have upper limb symptoms. There are a few academic papers showing that low normal vit B12 levels are associated with neurological symptoms in the absence of anaemia and that the symptoms can present in the upper limbs.
I personally dislike Gabapentin as a drug although I accept that it is useful to a lot of patients. However with your history of responses to other drugs I would stay well clear if at all possible.
Hope this helps. More than willing to chat if you want.
Chris
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Thanks again.
My former GP was baffled to why my pain in my feet just upped and left that fast after/during the course of antibiotics.
The way I feel at the end of the a days work, where I work through the pain, and is just getting on with it. I'm sure I'm compensating with other part of my body, which leads to more tiredness. It is tiring to concentrate so much about what I can do, what hurt and push through the pain. Which is why I think I'm so worn out, wasted and fatigue after two days work.
The reason I'm pretty sure regarding ticks is that I have seen them on dogs and on others. Though I'm so used to getting bitten by Biting Bastard*, aka I'm everyone's mossie repellant, that I have learned how to ignore the bite, swelling and nearly the itch. So yes I could have missed one.
We have taken multivitamins while touring and regularly at home. The ones we go for have B12, but I will ask my GP for a test.
The doctors have ruled out thoracic outlet syndrome, though it ticks so many boxes regarding my symptoms.
One doctor talked about that it could be possible that the blood flow to the nerves is restricted. But ruled that out since it takes so long to settle back to "normal".
I'll stay clear away from the gaba then :-)
You have PM.
*I love females, but when it comes to any blood sucking insects that need a little help with their reproduction, I'm all for chemical warfare, because for some reason I'm tasty to them, and I hate the swelling, itching and oozing of "sap".
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I am interested that you say that TOS has been excluded. If it ha been thought of at all then further investigation would be worthwhile. MRI scans of the brachial plexus except after major trauma are a waste of time. I would certainly look at duplex ultrasound of the subclavian artery along with clinical examination.
A recent history of injury is suggestive but bilateral simultaneous onset is more suggestive of a systemic problem than a trapped nerve.
Chris
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I did get thrown off in a dramatic tumble, in a 120km/h sandstorm, and got a fully loaded touring bike dumped on me by the wind, about eight months before. I didn't feel a thing other than some road rash on fingers and marks from where the gravel carried the wind hit me before I hit the deck. Though doctors have dismissed a link.
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Just back from meeting the physio, who works with pro-cyclists, he will do the coming tour de Britain, was about to go out to Spain and do the La Vuelta. He also do bike-fit and work with a local team and African cycling team. I emailed him before I meet him, a summery of these pages about my symptoms and a who's who of the people I have meet over the last 18 months.
He had a few question about it all, which the other physios didn't ask. He looked at me and the symptoms as a whole, which the GP's and physios really didn't.
He was rather surprised that no GP had ordered a full blood test yet. Since I have been touring/wild camping in remote places etc. He and his team normal get the blood works done, before they start anything on the athletes they work with. He will talk to his colleague about my case and get back to me regarding which blood test, would be best to ask my GP for. As he said with a blood test, we could soon figure out if I had a deficiency of some sort, a parasite/infection or too high a white blood cell count etc.
So I will wait until I hear back, before going to my GP and get the B12 test. When I get my blood test back, I will send my result to the physio who then will send it to his team in London and Belgium. For them to look it over and come up with a plan, if there is a plan to make, what to eat and get a booster on. The team is the same people who check all the athletes bloods he works with.
He like the other physio's I have met, found that my spine/back between my shoulder blades is rather stiff and will do some work on there. Though that is not the reason for my problems, but it might help me to not feel so fatigue and my posture.
He will also give me a general work over and some training to do the next time we meet. He send me home without homework today, but I should report back to him what I feel over the next few days. Since he did some work on me and I shouldn't hold back, he would rather hear nasty thing than nothing, since we all are different.
He knew about the various drugs we have talked about here. From what I could get about how he works, he clearly works with a team of different doctors, specialists etc and have learned from them. And sees it all as one package not just one thing at the time. He and chrisbainbridge both paid attention to the pain in my feet, where others pretty much ignored it as soon as I said the pain had gone.
I really do feel with what chrisbainbridge said here and what the physio said today. That I'm finally on the right donkey and we are moving in a direction that might, hopefully soon, find out what is going on. Just hope that the waiting times, will not be talked about in months but in weeks, don't fancy going into a third year, without knowing what is what.
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I will keep my fingers crossed.
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So pleased the physio is being wholistic and sensible and that what he says is seguing nicely with chrisbainbridge's sensible contributions. I find the tendency in some Western Medical Practitioners to look at 2 inches of you and ignore the rest to be utterly maddening.
Hope your GP is helpful about the bloods and the physios are able to help you get some improvement whatever the results are.
Reminds me, I really ought to try restarting my hand/arm physio and do some bloody shoulder physio now I've nobbled one set of problems. Should strengthen it while I can and if I get issues get back into decent-physioTM for further advice from him or his manager.
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All the best with all this, Woolly.
I share the concerns that up to now no-one seems to have taken a step back and a fresh look despite the time that has passed.
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How the feck did this happen?
Over the last year my boss have talked about nearly having the same as me. Numb finger, problems with making a fist and other symptoms like me. He did go to his GP early spring and they were pretty sure it was carpal tunnel. But he hold back on the operation since he would not be able to work the busy season.
At the end of August he went back to his GP to get it started again. Got referred, specialist was sure it came from the neck, booked in for an MRI scan plus and other test(can't remember what), booked in for a chat about the results.
All the by the end of September this fecking year!!!!
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Different GP contracts, NHS trusts?
I can walk into my audiology 9:30-12:30 every week day for drop in repairs, batteries and to get a loan hearing aid if mine has broken (if I had standard aids I'd be able to get moulds/tubes and a loan hearing aid programmed to my needs). A new GP referral or secondary referral from an other audiology department takes less than 3 weeks to get an appointment to set up support.
A friend in London has to wait *3* months to get an appointment with her audiology to replace an earmould which has a huge crack in it (which will cause discomfort, potential damage to her ear and hearing aid feedback cos she's deaf as heck and running high powered aids). Several audiologies will not provide tube-replacements telling people they have to do it themselves even though it's fiddly and many (especially older) people can't do it without wrecking the hearing aid itself.
Personally I'd not stand for the latter, I'd be there at 9am and kicking off a massive STINK because of the risks of dodgy earmoulds (they're bad enough when not dodgy, some deaf folk end up with chronic infections and raw ear insides) and I'd be escalating my complaint to The Highest potential person (my mum used to demand to be seen and was seen by hospital administrators in the 1980s, the bod who RAN the hospital, it worked).
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All the by the end of September this fecking year!!!!
I know the NHS can be inefficient at times, but even bearing that in mind, I have never encountered a rigmarole like the one you have described over the last couple of years. It is not the norm.
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OK chaps collect all your really naughty words and say them loud! Feel better, good!
Just back from the GP where I was asking for more blood test and a trip to the centre of tropical diseases. The GP was not interested at all in the print out of what chrisbainbridge said up thread, though did get secretary to scan it and put on file. The GP was not interested in what the physio have said about blood works. You had a B12 test already and it was ok.
Again I was asked "what do you want me to do", so I asked for a referral to the centre of tropical diseases. The GP said you had a Lyme disease test and it was ok. Again not interested in chrisbainbridge said regrading how hard it is to diagnose, along with no interest in the pain that was in my feet and went away with antibiotics etc etc.
The GP also said that we have come to an end and there is no more we can do for you and we will not give me any more referrals. There is no more money in the pot. She couldn't and wouldn't say what to do next. When I asked if it possible to get my blood test released so the physio and others, could look at it she told me that it cost money and I could get all my paper work released if I wanted. I wonder if that was a strong hint to go private if you are not happy with our service?
Just for good measure repeat your naughty words a little louder this time.
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That is so rubbish. I am welling up with anger and frustration, especially having seen how poorly and in pain you have been recently. What on earth can we do next? >:(
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Your GP is an obstructive fool - or they simply don't believe you. See a different one somewhere else.
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What he said.
Jeez, Woolly, could they make it any harder?
And what's this 'no more money in the pot'? I never heard of such a thing :o
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That sounds deliberately obstructive from your GP. I would have asked her to put that in writing there and then if she was so sure (bet the 'no money left in the pot' line would have disappeared pretty rapidly then).
My advice would be same as TimC's, get a different GP.
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Do a subject access request under the data protection act of ALL your records and test results. I am happy to dig out the wording I have used for this in the past if you want. They can take up to 40 working days to reply but it's fairly watertight for releasing info.
Change GP and consider making a complaint to the practice manager of this place as it sounds like she's refusing to listen to reasonable medical opinion.
Rude words a plenty, so sorry to hear you have this obstructive shit every time you turn around.
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I know that there have been various GPs involved in this, but I thought that recently you had settled on a particular one who seemed to have a helpful approach. Is this a different one?
As mentioned above (by closetleftie I think), sometimes it is simply not possible to identify the cause of symptoms, but in your case it seems to me that there are gaps in the attempts to come to a diagnosis, not helped by a lengthy spell in the neurology cul-de-sac.
Hard to advise but I think if I was in your shoes my first priority now would be to find a GP, in a different practice if possible, that can take a more positive approach. Don't waste time with complaints. Generally I don't think chopping and changing GPs is a good idea (IME it can contribute to delays in diagnosis and treatment) but in this case I think it may be necessary to proceed further. Ideally you want someone that can take a completely fresh look at the issues. My experiences of meeting people who have not had timely investigations in their treatment is that there are a few factors that seem to feature more than you might expect: 1) Changing GPs 2) New GPs compelled to proceed along unhelpful lines of enquiry.by patient's pre-existing ideas about what is needed.
Was there any mention of pain management - I thought that was mentioned above? I'd have though that this would be helpful pending other developments.
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Barakta yes please and thanks please email to - my forum name @ the big G's mail .com
Will go and get the sign up papers from the other GP surgery tomorrow and get the ball rolling.
This is the second surgery and third GP I have talked to about this.
Yes there was pain management talks but my reaction to Amitriptyline, and what other drugs do/side effects, I fear (other people on this forum too) that it is a no go. Even my GP today was against Gapatrioline(sp?).
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Yes there was pain management talks but my reaction to Amitriptyline, and what other drugs do/side effects, I fear (other people on this forum too) that it is a no go. Even my GP today was against Gapatrioline(sp?).
Gabapentin?
A discussion with a reluctant GP is a very long way from a assessment by a pain management specialist. They'll have a range of options at their disposal that may or may not include the options that this cycling forum has decided is best for you ;)
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Gabapentin.
You know what? Maybe if you did the mad thing of taking the pain relief drugs they suggested, and ended up seriously poorly as a result, they might finally believe you and take some notice?
Your GP is treating you like a time-waster and needs a wake-up call.
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Poor Woolly has been seen by several GPs. The first one, a locum GP in Trawden, tried his best to help and referred him to the first two specialists. We then moved to Skipton to the Fisher Medical Practice and Woolly was treated with great care for several appointments by a Physician Associate from the States, who did try his best to work out some options. Since then Woolly has been seen by two book-on-the-day GPs who are seeing him for the first time, and have been rude, dismissive and unhelpful. I wonder if the next step might be to try to get an appointment with the lead partner in the practice, who Woolly has never seen.
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That might well be wise. Do they offer longer appointments?
Woolly's problems need time and patience; they are hardly like a quickie 'new asthma inhaler' slot.
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I replied to this a little while ago but it has disappeared.
>:(
I wonder if the next step might be to try to get an appointment with the lead partner in the practice, who Woolly has never seen.
Have all of the Skipton GPs so far been locums? I agree that seeing the main partner is worth considering.
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The trawden GP was the only locum. The two in Skipton has been GPs and there was a Physician Associate.
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No, they are all regular (salaried? not sure of the term) GPs. See here: http://www.fishermedicalcentre.nhs.uk/doctors,55841.htm The ones who have treated Woolly dismissively are Dr Curtis and Dr Livesey. He was referred to the Yorkshire Clinic by Dr Whitehead via Keith Kehoe, one of the Physician Associates, but has never met Dr Whitehead in person.
Dr Whitehead and the practice manager know Woolly's case personally, having received a letter from our MP asking for them to do whatever they could to speed up a diagnosis.
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OK. It might be worth a final go with the practice head. A double slot, as suggested, would be best. Just go over the history of the problems, without diverting too much into the issues with the various referrals, and simply emphasising how this is interfering with the life of someone relatively young and hitherto fit and well. Let the doctor do his or her thing in a systematic way.
My own approach - and Woolly may choose to do it differently - would be to avoid mention of the various internet suggestions at least initially, worthy as some of them may be, and to avoid trying to the lead GP down any particular path.
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I agree with SP's advice. Especially re: keeping the internet advice and appointments farces out of it.
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Typical week:
Monday - wake up happy ready to go to work, end of day tired, sore arms, hands and legs. Pain livable.
Tuesday - wake up still a bit sore but happy to go to work. Come midday pain, aches, tiredness in arms, back and legs make me look very much forward to clocking off time. Walk home, 4min, is a killer. Dump myself on sofa, not looking forward to going to bed or toilet. Because of the pain in legs and other part of the body when moving or going up the stairs. No help from me for house chores.
Wednesday - ultra fatigued, drained, tired. Dread the idea of going to make lunch, breakfast or going to the loo. Fear that legs/feet are not holding me, knowing that there will not be enough strength in arms and hands to support me if I should drop. Let alone do the washing up, having a shower, carrying a plate from room to room. On real bad days wiping after number two is an challenge. Going to the loo I brace myself for ten minutes beforehand, rest on the bog building up the will to fight against the pain to go back onto the bed/sofa for a rest/sleep. Just going to the kitchen for a pint of water have me drained of energy.
Thursday - back to just tired, need rest between the things I do. Dog walk, sleep, hoover, longer sleep. Rest weighing up how tired I am - is there enough in the tank to go shopping or just the washing up. Most days it is a quick dinner that gets cooked.
Friday - back to my "normal", yes pain is there but I can do stuff without more pain or sleeps between jobs. Might try to do some hobbies or diy, since I have two days rest before Monday.
Saturday - same as Fridays though I shouldn't go mad. If I did something Friday it is a no go today.
Sunday - a total rest day, if I do anything that makes me tired or flare up the pain in my arms and hands. I'll pay for it the following week three fold.
I pretty much need to plan my weeks to have a recovery day after work plus a rest day before the next job, and if I fail I suffer.
This week really hit me hard I'm just about over my two days at work. Tuesday eveing and all day Wednesday I was a broken man. In the last three months this is my second time where I have been this drained, fatigued and in pain. Else I'm pretty much on top of it and can managed it. First time around I worked three and a half days in a week in high season, so very understandable. This time around I don't know, I felt good the weekend before and was about to do some hobbies but I got lazy, so what kicked this one off I don't know.
We are hoping to get in with the GP on Monday together, hopefully if Peli talks to the GP it will result in something.
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Peli went with me to the GP today to see if we could do something. We hoped to talk to the top bod of the GPs but that person was on holipops. So we picked another.
We learned that the GP I met last week has referred me to the Rehabilitation Specialist at Airedale - Dr Stoppard. This was news to us. Apparently the referral letter is waiting to be typed and sent out. Knowing Airedale, we are in for a long wait. The GP said that the policy is they have to see you within 18 weeks.
The GP said it is now time to see how I can live and work with the problems I have, since we have spent so much time trying to find out what is wrong with me. That is true, but mainly only neurology, where after long waits we have come to the end.
Anyone who knows what a Rehabilitation Specialist does and what to expect when visiting one ?
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I've just read your sept 19th post.
An acquaintance's wife had similiar-sounding problems. She was diagnosed with fibromyalgia. It does sound awfully similar.
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I don't think fibromyalgia has been considered by Woolly's doctors so far (I know Feline mentioned it on this thread a while ago). If they'd suspected it I imagine they would have diagnosed it by now? But who knows.
The GP visit today was bizarre, and depressing. This particular GP (the fourth person we've seen at this practice) was defensive, stand-offish and downright unhelpful from the very first moment. His stock answer was: "You'll have to speak to Dr X [the third GP we'd seen] about that. I'm not going to sit here and give my opinion; you need to have that conversation with Dr X." Dr X is the GP who told Woolly no more referrals could be made on his behalf.
Today's GP couldn't explain why Dr X had decided to make a referral to a rehab specialist without actually telling the patient himself. I suppose we should think ourselves lucky that any referral was made at all?
I asked how long it might take to get an appointment with the new specialist and was answered with a shrug. I asked if the referral could be marked 'urgent' and got another shrug.
So, we wait some more.
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I would suggest that, if possible, a change of GP surgery is in order, it sounds like, on top of the health issues, you have landed upon a crap practice.
Reminds me of the practice I used in my early twenties, I visited them once only to be asked, by the GP, "Why have you come to see me, then?"
"Errr, 'cos I am ill" was my reply.
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There are only two surgeries in Skipton. One is notoriously crap and is the one locals moan about (82% of existing patients would recommend it). We are with the "better" one (93% of patients would recommend it). It's hard to know what to do.
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An acquaintance's wife had similiar-sounding problems. She was diagnosed with fibromyalgia. It does sound awfully similar.
I did wonder about that. Not fibromyalgia specifically, but the way that your pain and tiredness levels fluctuate in response to exertion does seem consistent with one of those chronic fatigue/pain type conditions.
In which case it comes down to spoon management, pain management, rest and finding a medic who'll take you seriously.
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What category of medicine does fibromyalgia fall under?
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Reminds me of the practice I used in my early twenties, I visited them once only to be asked, by the GP, "Why have you come to see me, then?"
"Errr, 'cos I am ill" was my reply.
It's not an unreasonable question. FWIW I can't remember the last time I actually went to a GP because I was ill (rather than for referral to specialists, hospital discharge followup, monitoring of chronic conditions, or because their computer needed authorisation to allow me to continue collecting the prescriptions that stop me getting ill).
And even if you are ill, are you seeking medical treatment, or some paperwork to keep the DWP / HR vultures at bay?
Admittedly young men tend not to go to GPs for matters concerning sprogulation or the avoidance thereof, which is another common matter.
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What category of medicine does fibromyalgia fall under?
Rheumatology?
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What category of medicine does fibromyalgia fall under?
The bloody awkward category.
There are GPs who think that ME/CFS, fybromyalgia and suchlike simply don't exist. If they can't poke it, look at it with a microscope or grow it on a petri dish then it doesn't exist. IMO they are elective morons.
It's difficult, going into a surgery knowing you "aren't right" but without something to point at for the doctor to look at or sample.
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What category of medicine does fibromyalgia fall under?
Rheumatology currently, but if articles like http://www.fibromyalgiatreating.com/the-brain-and-nervous-system-in-fibromyalgia/ are anything to go by then neurology would be more accurate. This was sent round the Farcebook lands by the various bods I know with fibro
I would also want to be looking at complex Regional Pain syndrome such as at http://www.nhs.uk/Conditions/Complex-Regional-Pain-Syndrome/Pages/Introduction.aspx even if you look at this and say "naaah".
Sorry GP was so hopeless. I think sometimes they are inclined to close-ranks when they feel they can't help any more, but referring you without informing you is RUDE and taking ages to process the referral is crap as well.
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Just talked to the secretary at the surgery. There is nothing in their system that says that I have been referred. There is a letter to me, which I have never seen, asking if I'm ok to go to the Rehabilitation Specialist at Airedale. Because I haven't exercised for a long time.
Sadly can't get a copy of my details on memory stick or CD/DVD. If I pay £10 they will print it all out for me to come and have a look at in a private room, can't see it on a computer. If I want to take that print out with me home, I'll have to pay 35p per page.
I have just send a email to http://www.lymediseaseaction.org.uk/ to see if they have any pointers.
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i believe that your GP practise is wrong on several counts.
firstly you have a right to request the information in an electronic format and they have a duty to supply it.
They are legally obliged to allow you to see it on the computer. They can charge you £10 for this.
There is a maximum fee of £50 for all the photocopying however many pages. It can be less but cannot be more than £50. The £10 is included in the maximum of £50. You can of course ask them to view it on the computer for £10 and then only ask for printouts of the relevant pages!
I would ask them who is their Caldicott Guardian and for a copy of their formal access arrangements under the data protection act 1998. I would also reiterate that you are not involved in litigation or planning to sue them and therefor you believe that it is unfair to charge you this amount.
Chris
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I wasn't allowed to see it on a computer, only a print out. I was told that the files were on a secure computer - when I asked if I could get it electronically to save paper and ink - and they can't give me it because of that.
Just found this http://www.cdc.gov/lyme/stats/maps/interactivemaps.html We didn't go to the east coast just down the west and wee bit in the middle in 2012.
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Well, it took a week and a half to get a letter to me with the booking details, so that I can use and book on - http://www.chooseandbook.nhs.uk. Why the feck can't they send an email, wasn't it the idea to make it faster/easier/simpler and make less work for the secretaries/GPs/patients, this new shiny and modern thing?
Booked in on the 13 Nov for some rehab, though I still wonder, rehab from what?
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The NHS are deeply allergic to email, except internally.
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Booked in on the 13 Nov for some rehab, though I still wonder, rehab from what?
Rehab from all the dysfunction (in the sense of muscles & nerves not functioning as they should) which you have suffered over months/years.
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Yesterday I spend some time at Airedale in one of their waiting rooms, with ITV on - do people really watch this utter drivel - an hour and 10 min of this day time stuff would send even the most harden super hero/spy into a catatonic state.
The poor Dr was under pressure, she was double booked and was running 30min late, well that was how the nurse defined 75min. I felt that she knew I had been booked into the wrong place, not her expertise/area. Though she did ask me questions and concluded that my/NHS time would be better spend on sending me to the fatigue clinic at Leeds Hospital. Since I do not show signs of muscle, nerve or brain damage she thinks that is it is a function ailment. Hopefully she will also ask my GP refer me to a colleague, who for the life of me I can't remember what did, but will know more than her about things that I could do to keep fit/going.
So she is writing to me GP asking to get me referred, so the wait continues.
the good news is that I feel reasonable well atm, though I have been doing now't. After nearly two weeks off work, holiday and low season for the bicycle shop, I went back to do a half days work. I could feel it, even when it was a slow half day. I think I have become used to the pain*, so coming back from a rest I could feel what I normally feel in pain.
*The doctor yesterday was a bit concerned and happy that I haven't taken anything for the pain, because pills for that kind of pain has their own side effect/problems.
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Yesterday I spend some time at Airedale in one of their waiting rooms, with ITV on - do people really watch this utter drivel - an hour and 10 min of this day time stuff would send even the most harden super hero/spy into a catatonic state.
I'm sure barakta's ranted about being in no state to make sense of the consultant orthoptics bod after being bombarded with a couple of hours of daytime telly in the waiting area. I wasn't feeling particularly with it myself.
I understand why they do it, though. Television has a wonderful calming effect on toddlers of all ages, hence its popularity for pacifying drunks in A&E, reducing the number of guards required in prisons, incidents on public transport and generally anywhere where annoyed people must be kept hanging around.
Bonus points for any programme portraying the main demographic of the waiting area in a poor light (Saints And Scroungers), inappropriate use of children's programmes, or TVs in audiology/ENT department waiting areas with the subtitles turned off.
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Woolly, I have just found this thread from your reference in another one. So sorry: I didn't know. I have a good friend who has ME and CFS, and from what I have seen the symptoms are very real, but as Mrcharly says there are a lot of doctors who dismiss it as a delusion.
From what I have seen from the outside, which includes a number of friends, as well as discussions with other folk whose family members have it, it is very real and unpleasant. I hope there is another reason for your problems.
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After a prod I managed to get my GP to get back to me via the secretary. I now got an appointment with a nurse to give some blood and urine. I need these so that I can be refereed too Leeds Fatigue Clinic. I wonder which the blood test area.
I also got a call back from the occupational therapy/health at Airedale Hospital Stroke Unit, whom the Dr from the Rehab Clinic referred me too. She will do a home visit and talk over what she thinks could help me to stay on top of the fatigue.
The "good" news is that I'm not working much which means I'm not fatigued or in pain.
I have invested in a Powerball, which should be good for arthritic conditions and carpal tunnel. I have taken it very easy with that one, as of yet it has not set off the pain.
I have also been eating turmeric tablets, which have sorted the constant waking up with a blocked nose, sinuses and the general feeling like I'm coming down with a inner ear infection*, which have plaque me for the last five or so months. Along with less pain in my feet, though that disappeared at the same I stopped working so much and started to eat turmeric. So I can't say that if it has worked on my feet or arms regarding pain and aches.
* Something that I have suffered from all my life, as a wee nipper I had it 2-4 times a winter. I had to wear a woolly hat that covered my ears from early autumn to late spring. In the vague attempt of keeping the pain/infection a bay. Since I was 18-20 until last year (when I was 43) I have been able to walk without a hat in winter just with me bald head. Only on cold days (below 0c) I wore a baseball cap. In that period I have had it around 5 times, but it was nicely controlled with a good dose of Sudafed and a night or two kip. But since last years episode, two weeks+, where I couldn't shift it and had to take antibiotic for a week, my ears have been extremely sensitive to cold. I have been wearing ear warmers for the last 2-3 months when walking the mutt. Even when it is warm enough to walk around in shorts and a jumper. It is the cold wind/draft that goes right to the bone/ear and kicks it off. But ear warmers have not helped in removing the feeling that I'm coming down with an infection, the turmeric has. I'm on my second pot of turmeric and it does really work. It took 3-4 days before I could feel any changes. I had a week off, planning to get a new pot went a bit Pete Tong, so I felt it coming back as I ran out. But it went walkies after 2-3 days when I started to take it again.
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It sounds to me as though a Mrs. Wow Bespoke Headgear production is necessary. I will speak to The Management.
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Oooh could I request something with tassels and ears :)
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I would have thought that a powerball is terrible for carpel tunnel syndrome, tbh. ymmv
The last thing you need is tightening.
There are massages that can help - basically two thumbs pressing and spreading the 'tunnel' and up and down the length of the wrist. rolling on a tennis ball can help.
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Actually the pressing and rolling do not help. Reasonable study of a splint which attempted to do just that was a failure.
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On the turmeric side, look for curcumin capsules, easier to take than straight turmeric.
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I got some 95% curcumin capsules.
I have felt no il effect with the powerball yet.
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Back form my fourth/fifth visit to the vampires, since this started. This test was printed out so I could actually read what they are testing - Full Blood Count, Thyroid Function U/E, ESR, L.B.P, Phosphate, CRP, HbA1c. I also had to pee in a pot.
Now lets see if I pass this "exam" and get be send to the next stage.
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Oh I forgot three days ago was my two years anniversary of being off the bike...
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Still failing to get the occupational therapy/health meeting here at home or at Airedale. Last cancellation was because they were under staffed and out of beds. Third time lucky this week, should get a call tomorrow about a new appointment.
I'm now booked in at the Leeds Fatigue Clinic (CFS/ME) on the 30th of Jan. After a false start, my referral was sent on the 11. Dec but didn't arrive at the right place, until after I got the GP to fax the referral to the right place. Was told by staff at Newsam Centre that that is quite normal ...
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Went and had nearly two hours chat with the senior nurse of CFS/ME. We narrowed it down to that I do suffer mild CFS, though not what is the cause for the pain. And talked about me joining either individual or group sessions to help me learn to live with CFS.
The nurse called me back last Tuesday to double check that I still wanted the group sessions. And to let me know that she would write to my GP about our last meeting and what we/I decided.
I also got their email address to where I send a more detailed description of my symptoms and a list of what have happened in the last two years.
The nurse called back the day after to let me know that she and others have had a meeting about me. Where they agreed that my problems are more complicated than they expected. Therefore they want me to have a chat with a Consultant Liaison Psychiatrist to discus me ailments in more details.
Today, a mere three days later, I got a very detailed letter, also addressed to my GP, from the nurse, about what we talked about and what we think it could be and what they recommended to happen.
I also got a date for my appointment, the 3rd of March, just under a month away.
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Good to hear that things are moving on at last - it's taken long enough!
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+1 (and no doubt many more)
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Good news Woolly!
Fingers crossed.
J
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Glad things seem to be happening. Fingers crossed that they can help.
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Mor ef inge rs cro ssed
<uncrosses>
CFS is something I'm sadly familiar with (one of my kids has it). Never come across it producing symptoms like yours.
I'm still suspicious of some of your problems being caused by upper spine injury. Nothing severe enough to show up on scans, just enough inflammation to press on nerves. It's a known fact that you had some traumatic strain to your upper back. That's not to say there aren't other things to be dealt with, just that I think it would be a mistake to ignore this as a cause of some problems.
Mine was hurt in a car accident 22 years ago. It still gives me low-intensity issues, such as my left arm going numb, getting pins and needles.
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I am really no expert on these things and CFS is sometimes used as a catch-all phrase by those who find little definite pathology for multiple symptoms.
I'd call it Complex Regional Pain Syndrome myself.
But I'm only playing with words and I don't think it would change the management.
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Yeah complex regional pain syndrome sounds more apt to me (IANAD). I have had a few students with it and it's not easy to treat/manage but can be improved considerably with the right support. Maddeningly it's most treatable in the first 6-12 weeks when most people in the UK don't get seen by specialists for 1-2 years cos of faff.
Ergonomics have helped one of my students hugely, going from 15 mins working at academic stuff at a time to about 30 mins and being able to do more sessions per day and work more effectively. All from proper chair/desk and things which didn't exacerbate the pain.
Hope they're able to narrow things down to something which is manageable and you SEE improvements regardless of what they call it.
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Thanks all. Its been a faff and yet a finger haven't been pointed at what is what.
My GP was quick to pull out the drugs for depression, not figure out what is the cause to my slight depressing state and the pain. The senior CFS nurse did forget that I still suffer the pain, and that we haven't figured out what started it all, I had to remind her.
What I liked about this last meet. Is that the nurse came back to me, after I gave her some more information, that my GP didn't want to read in the first place.
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Whatever this is, it is not Complex Regional pain Syndrome. CRPS presents with significant swelling, colour change, hair growth, temperature instability and severe overwhelming pain.
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Last Tuesday I meet the Consultant Liaison Psychiatrist at Leeds fatigue clinic. She too thinks that I'm suffering from mild CFS/ME or SEID as some people wants to call it now.
She thinks that we will never figure out what cause it in the first place or what is causing the pain, which is still there. She thinks that something send my immune system and nerves into a panic over drive and I'm suffering from pain memory. She is pretty sure that it is not a mystical virus or bacteria that is causing it all.
She is the first one to talk about my over reaction to drugs, they have heard about it before, but there isn't enough research done in that area. The fact that the pain in my feet went away so fast when I took some antibiotics for my ear infection. Is kinda proof of the panic over drive, because the nerve ends needed to be reset*. She is also reluctant to administer any antibiotic, if it was Lyme**, because of my reactions to drugs. She feared that I would suffer more than it would be worth and I had a risk off contracting the superbug "that is running wild in our health system" (my words there, though she did say/ask you have read the news about the superbug?)
Since my symptoms have moved from sever pain to more fatigue like symptoms, she thinks we need to work on the CFS/ME before we look at anything else. I'm booked in on a 9-10 month course, meet a specialist once a month, to help me with finding a base level of activity so that we can build on that.
The mission now is to get over the fatigue, then build up my stamina and then look at the pain if it is still there and then back onto the bike.
* She went into a brilliant description on how micky$oft windows sometimes freaked out and after a restart it was like nothing had happened.
** I have looked into Lyme and the more I read I do think it might be the cause. We have remembered that I did get bitten by something years ago, in 2009, while camping in East Grinstead. That clearly looked like a tick bite, red itchy ring spreading out in a circle from the bite site. I even found a photo taken a good nine months later and you can see still see the rash, which at that time was coming back on itself. At that time I didn't display symptoms that is linked to a tick bite that managed to give you something nasty. The hard part is to figure out which test to take, since there is so many different strands of Lyme and other tick born diseases/bacteria.
Ooh here is a good one for the conspiracy theorists - the first recorded incident of Lyme was recorded in Lyme, CT, in 1975'ish. Only 10 miles away from Plum Island, a little hop, skip and a swim across the sound. Plum Island was first the US Army test site for various funny/naugthy things. Then the US Agricultural test site for bovine TB, Blue tongue etc. And now it is under Homeland Security ... taps side of nose, while looking around to see if someone is looking at my funny tinfoil hat. And more funny theories - CFS/ME was developed by the UK, US and Australian governments, also used against Cuba. Though this is apparently true, the UK government has also redacted some information regarding CFS/ME until 2071, when a freedom of information request was made. But that is not going to help against the spread of tinfoilhattitis :)
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Lyme disease is some nasty, nasty shit, I hope you don't have it. Pretty sure it has been known about for a lot longer than since 1975, since it was identified in the UK in the 1600s!
Antibiotics don't trigger superbug infections, odd thing to suggest. Maybe I'm misunderstanding what your psych was suggesting.
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Yeah there is talk that Ötzi the Iceman had Lyme.
What she ment was that if I was knocked out for six with antibiotics I risk getting other disease like the superbug.
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Yeah there is talk that Ötzi the Iceman had Lyme.
What she ment was that if I was knocked out for six with antibiotics I risk getting other disease like the superbug.
Ah, that makes sense.
Trouble is, I think only mega strength antibiotics have any effect on lymes and the effect is permanent unless you take the in the few days after the bite.
I thought they could test for Lymes so it seems odd they are suggesting it is a 'possibility'.
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From what I understand the test in the UK and other European places often reports that there isn't Lyme even when there is, false positive.
I have looked into getting at test from the US. Though stuck on which one as there is many and they cost.
As you say the earlier you get diagnosed the better. The Lyme bacteria will be deeper in the body than the antibiotics can reach. Therefore stronger dose for longer, which is not nice.
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Well, this is a head-scratcher. I wonder if you will end up with a firm diagnosis of CFS/ME/SEID? Or do you officially have one now? I was diagnosed with it 20 years ago, but that doesn't mean I've got the same thing as you. It's a giant, perplexing mystery. I think it could be two or three different conditions. There's a list of 7 or 8 symptoms and if you have 3 or 4 of them and they can't find anything else wrong with you, you get the diagnosis. Which is a fat lot of help, because the only NHS approved treatments are CBT and exercise, which many people say are counterproductive. Does your course consist of CBT? The NHS specialists all tend to be psychiatrists. Some patients object strongly to the implications of this.
There's some recent research suggesting that CFS has a physical cause, something baffling to do with cells, but if you're looking for a treatment you can easily find yourself in the hands of people outside the NHS, including doctors who left the NHS because they want to specialise in CFS but disagree with the NHS approach. Some of these doctors describe themselves as practitioners of Ecological Medicine. One such is Sarah Myhill - lots to read on her site http://www.doctormyhill.co.uk/ Practitioners in this field are sometimes bitterly opposed to each other, even trying to get each other struck off. So I have no advice to offer. I seem to be untreatable. I recently read an interview with one of the leading American CFS boffins, who said she would much rather be HIV positive, because that is now well understood and treated and managed. I just wish I could time travel forward a few decades. I have a feeling it will take that long for CFS sufferers to get what they need.
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Given Woolly's description of the rash, it looks very likely that he has Lymes - which is really only treatable with antibiotics.
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Logically the Lymes has to be cured or ruled out before CFS can be diagnosed. The quacks call CFS a 'rubbish bin diagnosis', because you only get it if they can't find anything wrong with you but you're still tired after 3 months.
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From what I understood I will get CBT/GET, though she never said this, among other things. Yes I think I'm diagnosed with CFS/ME/SEID, letter from her is on its way to my GP and she will book me into their programme.
I did read about the hiring of a Consultant Liaison Psychiatrist at Leeds UK on http://www.meassociation.org.uk/ and other places. http://www.meassociation.org.uk/2012/09/sue-pemberton-parts-company-with-the-leeds-and-west-yorkshire-mecfs-service-liaison-psychiatrist-appointed-new-clinical-lead-6-september-2012/ Though there is a few pages out there praising the team at Leeds.
At the end of last month there was an article out from Columbia university saying that they now are pretty sure that CFS/ME is bacteria related. http://www.mailman.columbia.edu/news/scientists-discover-robust-evidence-chronic-fatigue-syndrome-biological-illness
I have found a cfs/me forum - http://forums.phoenixrising.me/index.php - which got many helpful people. I'll post my situation/process on there.
Though reading about cfs/me it is clearly misunderstood by many. And many suffers are so desperate that they self medicate, finding anything that will give them a little boost/hope.
I'm glad I'm only a mild case, it must be horrific to be moderate or sever. I'm lucky I can walk the dog twice a day and do other things, if I pace myself and remember to rest. I find that I can do things happily up to 1.5-2 hours if I plan ahead and remember to rest* the same amount before and after the event. If I don't I got to pay back the next day.
Others got just about an hour to two hours activity in them a day at a very slow and subdued pace. Going to a cafe next door or visiting their GP is too much to take in for them. A shower, cooking or toilet time cuts into that activity time.
* Rest is totally off time, can't do the washing up other light chores. The most I can do is watch a silly movie where I don't have to think. Though on bad days I can't even concentrate on that, if I do recovery takes longer. Rest before and after can't be the same rest. If I need to rest 20min after I have done 20min, I can't combine that with my rest before the next event. So a day with two/three events is soon over.
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Sounds like classic CFS and the classic approach. You seem exceptionally well organised and motivated and I wish you all the best.
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Thanks Porkins. How bad was yours, how did you manage and are you over it?
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I'm not sure how to answer without giving you the whole story. And I hate to face up to the whole story. But I should, so here goes.
I should start by saying that I have had bouts of depression since ten years before the CFS. I must have been on most of the anti-depressants by now. But because the depression comes and goes it's hard to tell which anti-depressants are effective. And often it's hard to distinguish the fatigue of CFS from the apathy of depression. If they both arrive together I tend to give up and get very negative and I don't attempt to manage the CFS correctly. And if I suddenly feel OK I might buzz around for a few days or weeks convinced that I am 'better' and neglect to manage the CFS correctly. A lot of CFS patients yo-yo like this - watch out for it.
I am also extremely susceptible to stress. Some people thrive on it, I am worn down and traumatised by it.
When I was 30ish I had my own business, growing fast, lots of pressure, very demanding alpha male clients. I was also out nearly every night, burning the candle at both ends. Looking back, I can see that I was taking my immune system for granted. This sort of behaviour is very typical of CFS sufferers, hence the yuppie flu tag.
There was one year when I seemed to catch every bug that was going round. Finally I got a bug which I just didn't seem to recover from. This is a common 'pre-CFS' scenario. I was endlessly tired. 1 or 2 hours useful work a day. The rest of the time I was dozing or biting everyone's heads off. The only other symptom was that I seemed to be passing undigested food. Maybe it was stress or a food intolerance. I think it weakened me because I wasn't getting adequate nutrition.
I took 3 months off and went looking for a diagnosis and treatment. The term CFS hadn't been invented. ME was vaguely known about but most doctors dismissed it as 'all in the mind.' When all my tests came back negative the doctors were stumped. Some thought I might be a malingerer but they couldn't really say it because it was obvious that I had huge incentives to be back at work. In those days a lot of patients did get dismissed as hypochondriacs or workshy. I went to all sorts of quacks and healers, you name it I tried it. Nothing seemed to help. But the 3 month break was a huge tonic. I went back to work, stopped the boozy late nights and had a productive 12 months.
Then I got cancer and had to take 9 months off for treatment, including particularly toxic chemo with severe side effects and major surgery. Went back to work for another 12 months, very productive, all good, growing the firm fast, feeling indestructible.
Then the fatigue came back with a bang - as if someone had taken my batteries out or cut my strings. I'm told this was probably partly a reaction to the chemo. I think the surgery took something out of me too - my whole abdomen was opened up. I took some months off but it didn't really help. Unlike you I had no aches or pains whatsoever, never have had. Just fatigue, brain fog and poor concentration. More doctors and tests and quacks and eventually an official diagnosis of ME. I rested a lot, was very rigorous about nutrition, home made additive free this and that, but I was still knackered. It felt as if the cancer treatment had stripped a layer off my immune system or my resilience or something...as if I was in an egg shell which could be broken by a minor illness or stress or work or deadlines. I thought I would have a total collapse if I tried to go back to work. I was actually scared of working by this time, and I still am.
So I quit and sold the firm for a pittance. Getting shot of the stress of worrying about the future of my business and the demands of the clients and staff was...immensely beneficial. I sold my house and put the equity in to some buy to lets and went back to living in a rented room with housemates. While the property market was rising in the 80s this gave me an adequate income with about half an hour of work per week. I felt as if I'd taken early retirement at the age of 36. I had about 5 years doing whatever I wanted. The CFS was 100% managed by cutting back on work by 99% and giving up booze and unhealthy food. I got really fit with some extended cycle touring. Happy days. As I got better I even went back to work part time - low pressure stuff, short contracts, bits and bobs of freelancing, with long stretches of doing nothing very demanding.
By this time CFS officially existed and I was under the care of the CFS clinic at King's in Camberwell. I had been prescribed CBT and GET. I dislike exercise so I implemented GET with the touring. Start gently, build up very gradually, low gears on the climbs, don't use up more than 80% of your energy on any given day, one or two rest days per week. From what I've read, I suspect cycle touring has other benefits for CFS sufferers too: you tend to eat little and often - some say this is more beneficial than 3 big meals per day. As you get fitter and your mileage increases your body seems to tell you that you don't want greasy take aways. (That's what happens to me anyway.) The country air makes a difference - London air quality is terrible. Wearing shorts and short sleeved shirts all day gives you the benefit of more skin exposed to the daylight. I suspect it all adds up. Plus you have the happy exercise hormones being released for several hours per day - this must be good for reducing stress and strengthening the immune system.
That's all for now, I'll finish tomorrow.
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The country air makes a difference - London air quality is terrible. Wearing shorts and short sleeved shirts all day gives you the benefit of more skin exposed to the daylight.
Quite a few people with CFS report that exposure to sunlight makes them worse. Seems counter-intuitive but CombatAnt reported that and it is also my stepson's experience. I guess this shows that we are all different.
Woolly, I had a chat with my wife about Lymes. Her youngest daughter got it from a tick bite when very young, mum recognised symptoms and got effective treatment early. Obviously she has a vested interest in keeping up with latest news on Lymes.
She's surprised they haven't given you a blood test, but the main limitation of the blood test is that it can only tell you if you have had Lymes at some point. It can't say whether it is active in your system or not.
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Many thanks Porkins, that is a big help.
mrcharly, I have as the normal UK Lyme test which showed nothing. From what I have read online there is many different test out there, so which one to request or order.
I don't suffer from other typical signs of CFS - stomach problems, headache, sensitivity to light, brainfog, sore throat etc.
I see that some people with Lyme have relapses, is it possible to get bitten show no signs of Lyme but three years down the line suffer?
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Absolutely possible for no symptoms for years then a surge - possibly symptoms go, then come back, etc. It is one of the horrible things about lymes.
Your doctor should be able to determine which test to have run - there are only 3 types of lymes. I believe the tests can provide false positives but I'm not sure about false negatives.
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Just remember this thread - https://yacf.co.uk/forum/index.php?topic=34072.0
I think the reason I didn't go to the GP is that I didn't have any other symptoms.
I posted on the CFS/ME forum - phoenix rising (http://forums.phoenixrising.me/index.php) - and they are not keen on the NHS use of GET, GBT and PACE. Along with everyone says get a Lyme's test but don't waste time in trying to get it via the NHS - go private. They are also not keen on the Leeds CFS/ME clinic and one member/poster have dealt with same Dr. as me and told me to run away.
Time to research which test and where from, just a wee bit over my head. Looks like there is a few different test depending where you are with your symptoms. Then there is the question where from, which clinic is receptacle and will give me a report that my GP will accept. Since I kinda will go behind her back. She wasn't too keen on me when I last asked for a different test, because friends (online/offline) recommended it.
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I contacted Lyme Disease Action - www.LymeDiseaseAction.org.uk (LDA) who then contacted Rare and imported pathogens laboratory (RIPL) - https://www.gov.uk/government/collections/rare-and-imported-pathogens-laboratory-ripl - and they have no results for me, so I just had the screening test done which was negative so my GP/consultants wouldn't have sent it on to RIPL unless an immunoblot was specifically asked for.
My options now regarding a test:
- Show the reference LDA gave me previously about the screening test and ask my GP for an immunoblot to be carried out and ask that I want a treatable cause of myillness to be considered thoughly
- Have an immunoblot carried out privately at one of the labs LDA have listed below
LDA can help with the interpretation if I have a negative immunoblot from either of these routes.
LDA said this about paying for testing:
Beware of foreign labs doing tests for you as they may use tests that no GP would believe. Yes, there are private testing facilities, but they do the same test as the NHS test and it can cost a lot of money. You can get a test for Lyme disease through Medichecks http://www.medichecks.com/ The Doctors Laboratory (TDL) in London http://www.tdlpathology.com/ or County Pathology in Guildford http://www.countypathology.co.uk/ Some feedback indicates that Medichecks will only perform an immunoblot if the screening ELISA is positive. TDL and County Pathology will both do an immunoblot if specifically requested. The immunoblot will probably be the same one used by the NHS which is a good thing as the result will be believed by UK doctors. Immunoblots from different manufacturers vary - one is not necessarily better than another, just different.
LDA also said :
I suggest you could ask your GP for a trial course of doxycycline and ask what is the balance of harm of treating someone if they don't have the disease compared to not treating someone if they do.
Now that is going to be interesting my GP wasn't very keen when I last asked for more test for Lyme/B12/etc. because I was desperate to find out what is going on.
I'm awaiting info from Leeds CFS/ME clinic, need to give them a bell. The CFS/ME forum - http://forums.phoenixrising.me/ - aren't too keen on the Leeds CFS/ME clinic and the Consultant Liaison Psychiatrist I'm seeing there. Because they use GET, CBT, pacing and that there is a psychiatrist.
I have followed the Consultant Liaison Psychiatrist said to do, when I last saw her, for three weeks now. Lower my activity level and find a point where I can be active every day, so that I don't have any highs and lows. This just causes me to be bored, lethargic and more tired than before, I also find that I need to sleep more. My pain in my lower legs and feet is also worse, bigger area and more painful. If I have to do more find that I don't have the energy, and if I did I was really knackered after.
I got a step counter on my phone and I try to keep a steady 5-6000 steps every day, just like the Consultant Liaison Psychiatrist said to do. Where before I did few days at about 7-8000, one maybe two days above 10000, a good five mile walk with the mutt. This though depended on what I have done the week before and what was planned ahead.
Then at least two days rest/recovery below 4000, e.g. doing absolutely now't, nada, rien after the big days. But I wasn't bored, didn't feel tired, slept less, wanted to do stuff, had something to look out for, because I could. Could put in that bit extra if needed - though needed to watch out so that I didn't hit the wall e.g. learn to stop before getting tired and leave unfinished jobs, that extra 3-5 minutes to finish the dishes, could push me over and cause a day in bed.
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That's all a bit 'meh', isn't it? Do you find yourself almost wishing you were given a positive diagnosis, even if it were something serious (just so you knew how to focus your efforts and what to work on)?
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That's all a bit 'meh', isn't it? Do you find yourself almost wishing you were given a positive diagnosis, even if it were something serious (just so you knew how to focus your efforts and what to work on)?
You got that spot on!
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If you choose to go down the private route be aware that TDL do have a Manchester office, might save you a trip to that London.
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I contacted my GP today and she understood my request for westernblot/immunoblot test. The GP couldn't find find it on their system, but contacted Airedale Hospital where they get their blood test done. The GP reported back that Airedale Hospital did send my test to RIPL in Porton Down. Where they would only do the westernblot test if the first test was positive.
My GP said that they (the surgery) couldn't force/ask RIPL to do the westernblot test when the first test was negative. My GP also said that she now hopes that this put my research into Lyme to rest. So I don't think I will get a referral from my GP or that they will give me a course of doxycycline, without further proof.
So I will look into getting the Lyme test done privately.
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Seeing your 'spectator' comment on another thread I had a look through your posts and eventually found this.
I recalled you being off the bike a while back, but had no idea it was ongoing. This is awful.
I hope there's some improvement for you, sooner rather than later.
Best,
Paul.
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After some hunting around I have found a place that does the Lyme test privately and that the NHS will accept.
Needed a referral from the GP to get it going, agreed with the GP to send the referral to me. A week later find that they had send it to the test centre not me. GP after some pushing and stern talking from Peli, acknowledge that she have no experience with Lyme and could not read the results from a test.
Still await the date for a session at the Leeds CFS clinic.
I have changed the amount I move about and do things. Because the slow pace the Consultant Liaison Psychiatrist recommend, just bored the heck of out me. I felt worse, more lethargic, bored, drained and weaker than before both physical and mentally. If I needed to do a bit extra I simply didn't have it in me. The pain was also more dominant and easier to get to, if that makes sense.
So I'm back to the system/schedule I figured out myself, where I do have two days a week totally off and plan for that. But at least I can walk the dog more, do house chores and got that wee bit extra if needed. Pretty much have a life, as long as I accept that there will be off days. Mentally too I more together and that does help a lot too, I think I was not the best company to dear Peli either.
Though I did miss plan this week, we washed the car inside and out - it really needed it - and that knocked me out for 12 (I know the saying is six but I felt worse than that). Just about feeling normal now and we washed the car Monday afternoon.
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Don't fret, lad, there is no better company than you. We'll get there. :-*
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Got the referral from the GP. Jolly nice words the GP used about me - "... arranging a private repeat Lyme disease serology for this chap", "He has requested repeat testing ... even of the C6 EIA test is negative."
I'm getting a blood test kit send to me, which I need to take with me to my GP, to get some blood taken.
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Woolly, have you covered your diet in this thread? Could you direct me to the post?
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Only that I'm not eating junk, living with a veggie does have its good sides.
Have been thinking about upping my meat intake. Because I did bunk when not eating meat for over a week, when on our tour.
We are about to arrange a meeting with a local nutritionist and one to check if there is any allergies.
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I don't know how to say this without sounding hopelessly unscientific, and I hate it when people dish out medical misinformation, and I haven't made any attempt to research this, but caveat emptor and sod it, I'll just say it: allergy tests tell you about things that give you allergic reactions...but there also food intolerances, which I don't think the NHS addresses.
If you're intolerant of something you digest it without apparent issues, but your body has to work harder at it. If you're well, with a strong immune system, maybe you don't notice this extra effort. I have a feeling that the reason I and some other people feel better on a paleo diet is that we're not making our bodies cope with modern foods - and by modern I mean things we started eating when humans took up farming. I've read in various places that we haven't had time to evolve since we changed to a farmed diet, and we may have intolerances to much of what we eat.
I still struggle a lot with CFS, and I have a sort of hangover the day after I eat sugar, ready meals, factory bread and other factory-made starchy products. I've asked for NHS guidance on diet for CFS and got nothing.
Then there's a renegade ex-NHS CFS private specialist who is very insistent that we should be on a strict paleo diet e.g. on this page, plus many other pages on her controversial site http://www.doctormyhill.co.uk/wiki/Diet_-_what_you_need_to_eat_to_slow_the_normal_ageing_process
This dovetails with a book which made a big impression on me. It's written by a doctor-cum-fitness- freak who studied nutrition after she qualified as an MD and decided to focus on prevention of illness rather than curing it. Ignore the silly title and the pink cover, which is targeted at the US diet industry. http://www.amazon.co.uk/Ten-Years-Thinner-weeks-clock/dp/0340936053 There's masses of great nutrition info which I haven't seen elsewhere. I'd recommend this book to anyone, including CFS sufferers.
Make of all that what you will!
There are some new companies trying to get into this area by selling hyper-sensitive tests which supposedly tell you things that mainstream allergy tests don't.
And you can follow an exclusion diet by cutting out everything vaguely suspect for a few weeks and then reintroducing the foods you gave up one at a time to see what happens. 'Ten Years Thinner' is big on this. It can't hurt you, and you might discover things which tests, NHS and private, don't tell you.
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Our goid friends in the US have a friend, who after many expensive tests and sufferings like mine. Started to follow this book - http://whole30.com/2014/07/iswf-updates/ is now reporting that most symptoms have either gone away or are severely reduced.
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I don't know how to say this without sounding hopelessly unscientific, and I hate it when people dish out medical misinformation, and I haven't made any attempt to research this, but caveat emptor and sod it, I'll just say it: allergy tests tell you about things that give you allergic reactions...but there also food intolerances, which I don't think the NHS addresses.
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And you can follow an exclusion diet by cutting out everything vaguely suspect for a few weeks and then reintroducing the foods you gave up one at a time to see what happens. 'Ten Years Thinner' is big on this. It can't hurt you, and you might discover things which tests, NHS and private, don't tell you.
yebbut Tommy Godwin (vegetarian)
In my experience, the NHS certainly does examine food intolerances. I went through 6 months of exclusion diet, then reintroduction, then stomach biopsy and seeing gastroenterologist. Conclusion was not ceoliac but wheat intolerant. There is a growing body of evidence that wheat intolerance may have less to do with gluten and more to do with some of the starches present in wheat.
Going to a 'paleo' diet eliminates the grains hence none of these starches.
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Well results are back from the Lyme disease:
B.burgdorferi IgG Negative
B.burgdorferi IgM Negative
Borrelia IgG Lineblot (virastripe)
IgG to Borrelia P83 antigen Negative
IgG to Borrelia P58 antigen Negative
IgG to Borrelia P43 antigen Negative
IgG to Borrelia P39 antigen Negative
IgG to Borrelia P30 antigen Negative
IgG to Borrelia OspC antigen Negative
IgG to Borrelia P21 antigen Negative
IgG to Borrelia Osp17 antigen Negative
IgG to Borrelia DBPA antigen Negative
IgG to Borrelia P14 antigen Negative
IgG to Borrelia VIsE antigen Negative
Borrelia IgG Interpretation Negative
Borrelia IgM Lineblot (virastripe)
IgM to Borrelia P41 antigen Negative
IgM to Borrelia P39 antigen Negative
IgM to Borrelia OspC antigen Negative
IgM to Borrelia Osp17 antigen Negative
IgM to Borrelia VIsE antigen Negative
Borrelia IgM Interpretation Negative
Borrelia Lineblot Comment No serological evidence of B. burgdorferi infection.
So the search is still going on.
Lately have I have noticed that after eating cake - mainly Victoria Sponge, lucky not my favourite - the last three from three different bakeries. I have had acidic reflux about an hour later.
So I need to go to that local nutritionist to check if there is any allergies/intolerances.
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I am so sorry. I apologise for pushing the possibility so hard and for the scoffing you will now get from the naysayers.
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No worries :) I have asked LDA to have a look at the results from Porton Down, to see if they can find anything.
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I may be wrong, but afaik, there are no tests available for food intolerances other than an exclusion diet followed by reintroduction. The best that can be done is taking biopsies of your stomach and small intestine to look for reactions, and even that doesn't show up things like inabilities to digest a starch (for example) that then ferments in your large intestine.
I'm pleased for you that the lymes tests are negative. It is a terrible disease and a lifelong sentence.
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Tests are available for some food intolerances.
There are antibody tests for coeliac disease and breath tests for lactose intolerance.
Some intolerances are poorly defined and described.
It might not be possible to test for these.
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I suffer from acidic reflux and found that a cup of peppermint tea (no milk, no sugar) works wonders and far better than Gaviscon®, which makes me gag. :sick:
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Gaviscon (the liquid stuff not the tablets) make my acid reflux much, much worse. Like dropping mentos into a bottle of coke worse.
Fennel and ginger are brill for calming it down.
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Yogurt have always solved my stomach upsets. But did now't to the last event.
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Today I went to the Ear, Nose and Throat clinic at Gisburn (BMI Clinic). Because I haven't been able to shift the middle ear infection I have had (mostly) on and off for the last two and half years.
Few months ago I was given a nasal spray by my GP which only felt like helping the first few days and then back to normal it went. The last two years I have a had to wear ear warmers while outside, even on days where I would be happy to walking around in t-shirt. If I didn't, I would suffer really bad pain in my ears later that evening and the next morning I would wake up with blocked/painful nose and sinuses, feeling like I was about to come down with something.
I got a camera down my nose, now that was the most ticklish thing I ever have felt, I was in stitches. The specialist said it is probably the Eustachian tube - canal/tube that runs between nose and ear. That shrink when it gets cold and produce extra mucus, which then block the canal/tube and create a pressure difference which causes the pain in the ear. Sadly not much can be done with that, though he gave me a few drugs - new and different nasal spray and some antihistamine. Got an appointment with him in three months.
The very first question he asked me is how my neck was and did a few quick stretch manoeuvres to see if anything hurt there along with in and around my jaw. Is the neck connected to ear problems?
When I told him that I had two MRI's done, head to toe and the neck, he asked me was the MRI for the cyst? Eh, erm whowhatnow? Yes, he said and showed me in his papers, that in June 2013 after the first scan they did find a small benign cyst in my lumbar, I think it said. When I asked him what does that mean, he said I'm not a neurologist.
Yes I should have taken a note/photo, but I was taken aback, because that is a first I have heard about this, and he started to take noted into his dictaphone and I wanted to be sure that he note down what I have told him correctly.
Well I better get that Data Protection request in, because is there more I don't know. Will call my GP on Monday to double check.
Two great things about Gisburn - the Tour of Britain route was printed out for you to take with so you could see where/when they would be on the day :) Secondly I was seen to dead on time and was in for about twenty minutes.
Now time to have a look see at my MRI scan to see if I can find a cyst - what ever that looks like.
We did a very strict Whole30 diet for about a month before we added things back in one by one. I didn't notice anything when adding oats, milk, beer etc. I did get some reaction when I eat a sticky toffee pudding - more a "rush" than stomach problems. My farts after kidney beans was more potent than before. Just don't feed Peli any sugar! She was off her tits, like she had a few shots too many :) Oh and oat and rice didn't agree with her stomach either. We are a bit more lax on the diet now but will stick to it as we both like it and have lost some weight.
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Well that is a turn up. A cyst can be nothing - most of us have them sometime - but a cyst near your spine or something sounds like more of an issue.
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Can a cyst be the normal wear and tear for a 40+, the specialist/consultant told me they found on T6/C1?
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cysts normally occur because of some outside event; pressure, impact, something like that.
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Nothing to report, really.
Doctors have parked me with CFS/ME and the help I get with CBT, GET and PACE from the Occupational Therapist at Leeds and West Yorkshrire CFS/ME Service. I have already figured out myself. The first "plan" on my day to day didn't work and I changed it back to my own "invented" system, and the Occupational Therapist said - when I told her - that everyone is different and there isn't one way for all.
If I remember to stop as soon as the first signs of fatigue occurs and take it easy and rest well before and after an event, I can get to be out and about. But sadly every time someone sees me, they see me on a good day and when I have planned ahead to be out and about. Rest of the time I'm on the bed/sofa really doing now't.
Arms/hands feels good when I haven't done anything for a few days, but as soon as I do we head straight to pain.
My feet are still agony every morning and very sore throughout the day. It often spills over into a nerve pain going up my right leg to my buttocks and if I don't managed to stop it it heads to my lower back.
I'm on steroid and antihistamines for my middle ear pain for another month until I see the ENT specialist again. It's been a month and a half and it has done nothing to help with the pain and blocked nose/ears. Though specialist said it would take a few months before we seen any benefits. I got a funny felling that when/if it clears on these dugs I will come back nice and slowly as the effects wears off, so not cured - but just moved/ticked of the list for the GP/Doctors/Gov.uk.
It is clear to me that the more pain I'm in the more fatigue I become.
We have changed our diet to a whole30/paleo based diet. The only thing I have felt is that I have lost weight. Not felt anything with re-introducing banded food. When I go off the diet and have cake or anything with high sugar content. I get a weird feeling throughout my body and I can especially feel it behind my eyes (vision go blurry), in my arms/hands (numb, tingly and swollen) and there is a very bizarre rush through my system. It was really felt when I had a burger from BK, so no more junk for this hero. Oh yes then there was bacon-gate, I roasted some supermarket cheapest smoked with a chicken and potatoes. That send me to bed for a day after, full on fatigue rush through my body. I had some more chicken/bacon the next day and the fatigue happened again. No feeling of the runs or need to throw it all up at all. I did find online that others had a weird rush after eating too much salt.
About a month ago I suddenly felt the cold and needed to sleep with socks and a base layer on. It would normally only be when we get into single digits and Peli have asked for a few weeks to double up our duvet, that I would start doing such things. Throughout the day I also need an extra layer on, which is unheard for me. I know I'm getting older, but getting this pretty much overnight while it is still "hot". And I'm also slow to get warm again. It is not just my feet and hands it is the whole body.
The four things that have done anything to help with my ailments are:
- Doing absolutely now't, causes the pain and fatigue to subside.
- Taking antibiotics - took it for a week for the middle ear infection that wouldn't shift - which cleared my middle ear pain (sadly came back) and pain in my feet (sadly came back) in under three nights/days.
- Taking turmeric tablets daily reduces the pain and the blocked nose, sinus and ears. If I forget, the pain comes back within 3-4 days. I can live with the pain on turmeric but without chemical warfare is needed - Sudafed and Paracetamol.
- Taking an natural antibiotic given by a friend who is into homeopathy. Took one pill some months a go - hey it is that desperate I'll do anything - and I could feel a clearing of my ears, sinus' and nose, just like when I took the GP prescribed antibiotics.
The grand news is that I had a go on Kim's sofa - many thanks - and I didn't drop. It was great to be on a bicycle again, even it was for a very few seconds. I'm thinking the way to stop pain in my arms is to be on a bike where my arms/neck aren't under pressure. When I borrowed Auntie Helen's trike - many thanks - it was not the arms that moaned after a ride, it was the low gears/legs sticking up/on hills/lungs. So I'm thinking if I get a sofa with under seat steering, drive to the flat lands - Blackpool/York aren't a million miles away - and ride up and down the flattest section I can find. I might at least get a mile or two in with Peli, because being out and about on a bike with her means the world to me.
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It's not a good situation to be in. Poor Woolly can't work and is in a lot of pain every day.
If anyone knows how to get him into CFS/ME clinical research trials, please shout. We're desperate and the current psych route isn't helping.
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That sounds terrible :(
Poor Woolly :(
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Woolly, I had no idea just how much discomfort you were and have been in, when we were at Dufton. I'm really sorry for this and hope you find a way out.
love
Peter
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It's not a good situation to be in. Poor Woolly can't work and is in a lot of pain every day.
If anyone knows how to get him into CFS/ME clinical research trials, please shout. We're desperate and the current psych route isn't helping.
I can't help with trials but I could put you in touch with a friend who has suffered this for years - she (with help) worked out the base essentials that she needed to ensure happened so she could continue living.
CombatAnt might also be able to offer some information.
This is a sod of a disease, so vague and falls under the 'invisible' category, so it is hard for other people to understand what you are going through.
From my experiences (with a stepson who has it and my dear friend), key factors are:
Eat regular meals (even if the thought of food makes you sick)
Don't overdo it on 'good' days; taking it easy, not using up all your energy, is very important.
Eat healthy food. Not obsessive organic-only or something like that, but a balanced diet avoiding processed foods, definitely avoiding sugar and hard to digest foods. What is 'hard to digest' does vary from person to person.
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:( One of those diagnoses that doesn't help make the situation any less nebulous-feeling?
All the best for continuing to figure out the day-to-day navigation and hopefully the recumbent experiments will go well and give a little spark of feeling proactive to add to the pleasure of being out and about on a bike.
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Poor Woolly (& Peli). :(
About the only thing I can add, is that if you're doing paleo, don't fall off the wagon and have cake.
I hope something can be done to ease the symptoms.
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Thanks all.
Yes my own little system of rest and play works about 95% of the time, still learning. Though it is a pain that I can't be as active as I really want.
The odd time we have fallen of the wagon and had naughty food, really haven't been worth the joy. Weird rush, bad stomach(pain/runs), blurred vision, tongue swelling up, loads extra saliva, headache, swollen fingers, bad taste in mouth etc.
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Just read this thread from the beginning. Very sorry to hear you aren't well, can't offer any advice, but hope you find a solution soon as it must be hell for both of you.
Try and keep your spirits up. If you feel you could manage a bike ride, however small on any Sunday, pm me as I can soon be in Skipton.
John
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Thanks, everyone. Let's hope Woolly can get into a state where he's able to ride. Even a single mile would be something.
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In the last few weeks it has going a bit backwards, easier tired, weak, fatigued and out of breath. Have to do less, cut the dog walk even shorter and ignore house chores. Feet getting worse by the week, agony in the AM. Wakes up 3-4 times a night with very painful arms and hands. They are more often in pain during the day. Don't really have the mental capacity to do stuff, borderline brainfogs. Still feeling the cold big time, nearly fully dressed in bed with a thick duvet over me with the window closed and I'm not too warm. I used to be the flip side to that coin. Getting going in the AM is a right old workout and when I do get going there isn't much oomph to do stuff for long. The general mood have often been hovering around meh, bleh and crap.
One good thing out this is that my laptop don't seem that slow, as it really is :)
Today I had a follow up phone call with the Occupational Therapist at Leeds and West Yorkshire CFS/ME Service. We are doing the phone call, because they have to book a room for Skype and I have to sign a consent form to be able to do. I asked to do the phone calls earlier because the journey over, appointment and the journey back takes a bit more than three hours, and it is close to the max I can do on a good day, without rests. Anywhoo the call can only be classified as shite.
I should stop focusing on the symptoms and the pain I'm in and use mindfulness. Every time I started to talked about what hurt, how I felt, how various symptoms changed since we last talked. She steered me away and told me that I had to concentrate on my mindfulness and wellbeing. I should cut down on my activities, set lower goals, spend more time on resting, spend more time being mindful/meditate (though don't fall asleep when doing so), be happy in the moment, enjoy the small gains, learn ways to cope with the pain.
She will send me some reading material regarding sleep (though, I just put my head on the pillow and I'm gone, don't sense/wake up when Peli moves about, which I used to do), mindfulness and managing pain. Told me to have look at this little film - https://www.youtube.com/watch?v=C_3phB93rvI - Understanding Pain in less than 5 minutes, and what to do about it! And if had the money I should read this "Living Well With Pain And Illness: Using mindfulness to free yourself from suffering: The Mindful Way to Free Yourself from Suffering" and other "Buddhist'ism"/"meditation" mindfulness things.
Should look up and read about the "Pain gateway theory", to help with coping with the pain.
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Sounds like that phone/skype interaction was a frustrating waste of time; the only comfort is that you did not travel all day to get the plate of platitudes!
The gate theory of pain is useful but only takes a few minutes to explain. I would not buy a book until you think it's worthwhile after a quick Google.
I don't have much useful to say but you have my sympathy.
I think I'd SCREAM in your situation!
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I think I'd SCREAM in your situation!
Don't worry, there have been WORDS!
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Ugh, what utter "victim blaming" bullshit! The fact she leapt interrupting you is a bad sign, she could have listened, made notes and considered what you said. By silencing you with "mindfulness" on repeat she's clearly not listening and has her script of one size fits all.
My understanding is psychological therapies make NO difference to ME/CFS and there's a lot of controversy atm http://www.meassociation.org.uk/2015/10/press-release-me-association-pace-trial-treatments-offer-hope-for-chronic-fatigue-syndrome-28-october-2015/
I would feel utterly invalidated (and INfuriated) by that kind of response and I would say that was poor therapy even if there is any evidence to show mindfulness works. If she's not listening to you before talking over you then she's incompetent and unprofessional.
I've come across the gate theory of pain as my physio pointed me at http://science.howstuffworks.com/life/inside-the-mind/human-brain/pain4.htm and how they are realising neurologically pain is weird and not entirely what people expect. Not sure how that helped me as mine is caused by severe biomechanical instability etc and there are definite worsening factors which I can't entirely fix.
That video is a pile of twaddle, especially given that she's not looked at you struggling with physical abilities so "do some activity" "delve into your psychological past" "just think positive" is distinctly unhelpful. I'm sure they do have factors, but it makes it look easy "If you aren't better it's cos you didn't do 1-5 enough".
Ugh! Huge sympathies, no real answers tho, other than "shoot them". Gah!
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Yes, this. It's all getting utterly desperate. I've never seen Woolly so depressed or upset or in pain. We don't know what to do next.
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One of my students saw a doc for CFS/ME privately I think, I don't know if offering to dig his details out for you is helpful or yet another dead end and money down a toilet. Let me know either way.
I agree the response Wooly has had feels very inadequate even if there is "nothing anyone can do" with current medical science as it doesn't FEEL like it's been taken properly seriously :(
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This is awful. Let's just hope for a spontaneous remission of whatever-it-is.
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Sorry if this is going over old ground but I recall you mentioned lyme disease as a possible factor. Did you ever get anywhere with that or has it been ruled out?
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Tors, they did a couple of different tests and it looks like it's probly not lyme disease. See upthread.
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I suffer from acidic reflux and found that a cup of peppermint tea (no milk, no sugar) works wonders and far better than Gaviscon®, which makes me gag. :sick:
Omeprazole!
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@barakta you are spot on!
@Rutie you have answered @Torslanda question correctly and you can go to the front of the queue :)
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I suffer from acidic reflux and found that a cup of peppermint tea (no milk, no sugar) works wonders and far better than Gaviscon®, which makes me gag. :sick:
Omeprazole!
and fennel
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Barakta, I don't think they were victim blaming, just rather inappropriately applying mindfulness principles.
As we know, Wooly has had a prolonged period of really not being listened to; and I suspect would really, really like someone to shut up and listen for a while.
The occupational therapist didn't know any of this, was trying to apply some techniques but breaking the rule of 'listen to the patient first'.
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Empathy from another ME/CFS spoonie.
Psychological therapy does jack shit for my fatigue/pain days. I use mindfulness but not for that, for anxiety. All I can do for pain is rest (if too fatigued) or cycle (if not). That's the good bit, I guess, that cycling being non-weight-bearing and endorphin-releasing, it helps me.
I think psychological therapy suggestions stem from idea that CFS/ME is psychosomatic, which it may be for some people but eg mine was born of viral chest infections that I never recovered properly from (similar to those who find themselves with it after glandular fever).
Physio was briefly useful. But I got one visit with no follow-up, so only briefly.
But then of course there's the nights where I'm awake at gone 1am because the one symptom every person with chronic fatigue needs is insomnia…
(Melatonin helps me, if you can get it.)
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For what it's worth, remission is definitely a thing that happens. Five years ago I may as well have been bedridden for how much pain not being in bed caused me. Now cycling best part of 100km every week, and working whilst on interruption year from training in mental health nursing full time. You mightn't be the same, but hope is a precious thing these days …
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5 medics/academics have written to the Lancet to criticise the PACE study which claims graded exercise and or psychological therapies do anything for ME/CFS. I agree remission can happen, I see students in remission (and work hard to try and keep them that way cos pacing is very boring).
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5 medics/academics have written to the Lancet to criticise the PACE study which claims graded exercise and or psychological therapies do anything for ME/CFS. I agree remission can happen, I see students in remission (and work hard to try and keep them that way cos pacing is very boring).
Gods yes.
(Although I count pacing as the thing that keeps me in remission. Long rides mean making sure the next day is a "put feet up and not move far from sofa/bed day, busy few days mean knowing that the people I'm spending time with will understand and not be grouchy at me if I say "actually I'm just going to go spend some time on my own so I don't burn out", etc.)
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Spoonie, haven't heard that before.
I really do think that cycling and/or some bizarre ailment/virus/bug etc cause the pain which is now coming out in fatigue (CFS/ME).
The meditation/wellbeing/mindfulness podcast/youtube I have listen to over the years, and yesterday when I tried to hunt some down. All of them only made me more stressed, the voices they have to speak in just do my nut in. Can't deal with it. I'm happy with the music and got plenty of psy/trance/chill out tunes that make me relaxed/zone out/chill.
The other day I build a box/case for the raspberry pi I got, I found that playing around with LEGO had same effect as what I call meditation. When I whittle, sit and poke a bonfire, sit on the beach and let my fingers run through the sand or play/look with the stones there, I just zone out. Nothing going, utterly void, relaxed blizz. The therapist went erm I don't think that playing with Lego is the way to do it ....
Having some random person telling me to concentrate on my breathing with that voice, do now't, just gets on my nerves.
I have found that if I plan ahead with rest before and after I can do stuff and don't get bed ridden. Unless the doing stuff causes pain then I have to spend time in bed after, because after pain comes fatigue.
We are hope with getting a sofa bike I will get to ride and get these endorphins going to get the mood up, get the good feeling back, smile on the face, wind in the hair and wellbeing/mindfulness/meditation going big time. Lovely circle - can't cycle - feel crap - to get better need to cycle - but can't cycle etc.
From a quick scan it looks like Melatonin is for the lack/can't sleep bit, which is not what I suffer from - head, pillow, gone. The only thing that have stopped me from sleeping lately is feeling the cold. Today I was dressed up for winter/ice storm and was freezing when out with mutt, never have I had that before. I'm not the hot water bottle I used to be. And this just came on from one day to the other, not over a period of time that you would expect with getting old.
Anywhoo, thanks Katie for piping up, yes one day I will be back on that bike, and I'm glad you are on the winning side.
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My stepson was prescribed Melatonin for a while. It did help him; he had the fatigue+insomnia that Katie mentioned. Unfortunately, he needed increasing doses to get the same effect so very rapidly we hit max dose and it wasn't helping anymore. That's pretty much what the pediatrician said would happen.
Doing busy stuff with fingers has been noted to be helpful for lots of things - it acts as a distraction, activates bits of the brain, etc. There aren't any negatives as long as you can physically cope with it and it isn't an extra burden.
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Spoonie = http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
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Yup that sums it up perfectly. I found the spoonie explanation on urbandictionary. Though I was thinking about point/credits as in AD&D and other "roleplay/games".
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My thoughts on spoon theory is that some of the concepts are great, some of them are crap and some of the framing is a bit commercialised/Americanized for our tastes but if you can take the bits which work from it and ignore the rest it's very useful.
What I add to it is the idea that different things cost different "spoonies"(?) different amounts of spoons. So I can do about 10 mins of radio before keeling over but can usually read for hours; someone with visual difficulties might only be able to read for 10 mins but may be able to listen to radio for hours.
Part of managing pacing for myself is working out what things "cost me" or "use up" more spoons and what don't. By having a reasonable idea of what is tiring vs what isn't I have a better idea of how to live within my "spoon means". That means making sure I remember audio and travel are tiring and that I can only reliably do so much without going *SPLAT* and that's OK whereas some other things are really best avoided all together (excessively dexterous activities which will make my hands hurt).
The other trick with pacing and I think spoon theory is that it is best to try and live UNDER your capacity rather than what many of us do before we learn how - which is - constantly living at or above our spoon-capacity so have no reserve and may indeed be overall less capable cos we're constantly exhausted. Again very difficult cos a lot of pervasive messages from/within/by society and from ourselves internally that "we're lazy" (Yo Protestant work ethic yo) and "should be doing more". Sometimes, some of us just can't do more and doing so causes us harm.
We don't expect wheelchair users to walk up steps (with the simultaneous assumptive nonsense that wheelchair users who move their legs or walk at all - are faking) cos they're using a wheelchair, yet we expect people with invisible impairments/health conditions to DO stuff which is the absolute equivalent thing. Deaf people "should" LISTEN harder and use that MAGIC lipreading... People with pain and fatigue "should" just push through it...
If anything, the one thing that empowered me the most in learning to care for myself was refusing to "push through" as concept cos for me that resulted in blacking out on a regular basis. That's not to say if rehabbing buggered balance I don't "stress" my system tactically, but I do it in as controlled a way as possible. "Walk up the stairs without looking down" "Walk down 1 street looking straight ahead". When I was most ill, walking 200m was too much, when I was rehabbing I started at much less than 200m and tried to make sure I could go home and go *FLOP* before I pushed too hard or far...
I don't know specifically about CFS/ME/SEIDs type stuff, but I wonder whether some of the ideas in spoon theory and pacing might be a place to look for ideas, and if nothing else, maybe let you not expect more of yourself for now at least.
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Yup that sums it up perfectly. I found the spoonie explanation on urbandictionary. Though I was thinking about point/credits as in AD&D and other "roleplay/games".
I used spoon theory with a friend of mine who has a dual sensory impairment and very very bad epilepsy which he "ignored" for a long time and basically collapsed with exhaustion from. He had a few months of severe ability limitation and I think even now has to remain careful.
We created this "concept" of the Spoon Fairy and it was a useful way when he and I talked about being frustrated about his "limited" abilities that it could be "blamed" of sorts on the spoon fairy. It wasn't about my friend having personal failings, but about reframing it as "You can't see well, you don't hear well, your brain is a tad electric and you keep doing ALL THIS to your poor body - WHY?"
It certainly wasn't an overnight thing, friend did a good line in overdoing it a few times, but I think ultimately it helped him start to recognise that he could not always do the Xes and Ys in the same week, and he might have to rearrange or do Z instead. He started building in rest days when he travelled to do lecture tours. He very reluctantly accepted some assistive technology to help his hearing (I lie, Kim and I conspired with his long suffering wife to install a loop system in his living room while he was abroad. When he found out, he swore at us a lot, but eventually admitted it really helped and stopped the marital rows about DEAFENING TV volume).
It doesn't matter what you call it, but I think the idea of externalising the "currency" that allows activity is quite empowering and makes it easier not to focus on "blaming your body for being shit" but perhaps accept "this is what it is, I don't know what the future is, but this is now".
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Yup, agree, various things cost different amounts and there is more interest on bad days compared to good days. I kinda got an idea what cost what and when I can do things. Yes sometimes I do over spend, sometimes that is own to me not planing right, not reading the signals right or not stopping at the right time.
The thing I find the hardest is to say no. I have always wanted to help AND just want to get x done, over with and finished before clocking off. So I think the score atm regarding what causes the over spends : is me pushing through, because I used to be able to do this VS not reading the signals right and not stopping or saying naa I can't do this today, is about 3:1.
Every time I have meet my old boss, he says "you look good today" or "you look like there is nothing wrong with you". He don't remember that - I have told him - I have spend a good time in bed/resting before I have ventured out and about and will spend time after we have talked in bed/resting.
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*nods* sounds familiar. BTDT.
I suspect it's harder for you than me cos while I have never met you I am told you are a very tall physically fit and strong looking man and up until recently this has been fairly accurate so probably part of how you self-identity and have as part of you "I am a person who can do things and help others too". Your condition is not easily visible to outsiders so people will say "but you don't seem sick" thinking it's a kind complimentary thing to say when actually it's awkward and conflicting.
I am female so less physical expectations on me and I was born with my physical impairments so even less 'physical' expectations and while I may have reason X for not doing something, holding up a spacky looking hand tends to work well even if it's not the direct reason for not doing a thing ;) I'm also not averse to a bit of tactical lying because life's too short.
I'll spare you my disability studies theory about discredited vs discreditable! :)
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... I am told you are a very tall physically fit and strong looking man ...
blushes ... :)
We have played with the idea of doing something "drastic" so that it looks like I'm sick and head to an A&E. Then maybe I will get that missing test that figures out what is what.
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The Academic Literature TM does refer to people using "mobility aids" as a way of reducing hassle for not looking disabled although that can then make you a target for disablist hate crime... I also know of disabled friends feeling they have to do this, cos if they don't have a stick the bus driver won't lower the bus, but if they do, the driver will...
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Sort update :
Drugs for ears aren't working, hands/arms still hurt, fatigued, three years ago today I stopped cycling, feeling meh with a bit of crap.
But there is Peli, Tilley and LEGO so I keep plodding on :)
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What drugs have they hit you with? Serc?
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Nasal spray - fluticasone furoate and antihistamines.
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Woolly - just reading through the thread. Poo. Really sorry to hear what you are going through. Carol/daisyhill (Mrs Graeme) has been battling CFS for several years. I'm no use to her; and I'm supposed to be her partner. She's been journalling her experience and rarely has a discernible pattern emerged.
Recently she was offered 'reverse therapy'.
I'm just trying to be there and not add to her burdens but simply remind her I love her.
Thinking of you.
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Graeme sorry to hear this, it is a bugger to live with and hard to get used to too and for others to live with one suffering with it. I'm only diagnosed with mild CFS, it just don't bear a thought how people with more severe CFS cope/live.
I got this thread as my journal and one elsewhere that is more detailed so not to bored you lot too much :)
You are doing the right thing there G.
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Nasal spray - fluticasone furoate and anti antihistamines.
I don't know those.
Some drugs, for some things, can take weeks to settle in and help (thanks to NSTN for giving me that info when I started on drugs for migraines). If I hadn't known that, I think I would have given up in despair. The doctors were not very clear on that point.
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He's been on the ones from the ENT specialist for 2-3 months now, I think. He is definitely worse on them.
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My bad it is just antihistamines, remove the anti :)
Peli has it :)
I have been on them for three months and what I am taking them for has just gone worse along with all my other ailments. So I will be taking them until I meet the ENT on Friday and then stop, as I was clearly better without, ok not symptom free but better.
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Nasal spray - fluticasone furoate and anti antihistamines.
I don't know those.
I'm on fluticasone propionate (amongst other things) for hayfever. I find it very effective, but I tend to get nosebleeds if I take it (or any other aqueous nasal spray) continually for more than six weeks. So I only really use it for the May-June peak and do without in the later grass season.
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This is some of the diary I'm taking with me to the ENT specialist, since he asked for it.
Since starting taking the steroids compared to before taking the steroids :
– Tinnitus has played more often and longer – buzzing and ringing.
– More severe blocked nose and ears, borderline painful.
– More stabbing (ice pick) pain in inner ears.
– Had more pressures behind nose and ears.
– “Snot” become thicker and harder to shift.
– Had to take drugs more often – paracetamol.
– Had swollen glands around throat.
– Very throat sore (not dry) while swallowing.
– Pressure pain behind nose and eyes, above mouth, between ears never had pain there before.
– Headache.
– When pressure/pain is at the worst behind the eyes, it takes longer to focus.
– Feel much colder all the time – have dress up in more layers than normal – I’m not the hot water bottle anymore.
– Feel weak, fatigue, drained more often.
– Often have brainfog
– Takes longer to get started/going in the morning.
– Mood has also been lower, and low for longer than before.
– Pain in feet become much worse.
– Arms and hands also worse.
– Often wake up to extreme stabbing pain in my feet/ankles.
Question, is it the steroids or am I just getting worse ...
Sitting indoors with the heating on and have merino base layer, merino mid layer, thick fleece, thick hiking socks, long trousers, hat and a buff over my ears. And I'm just about warm enough, I would normally be sweating like sitting in a sauna, if I wore this in a room that is 19.5c. Normally I would be wearing shorts, base layer t-shirt and a thin cycling socks and hat and be fine. This started after two weeks of steroids and came on from one day to the other. Only one night I have been too warm in bed but I felt like I was running a fever as I went to bed.
My ears are feeling like I'm coming down with a flu and or middle ears infection, much pressure there behind eyes, nose and between ears in my sinus. As I go to bed tonight the pressure will start pushing towards the painful area, will often have pain like a ice pick in inner ears. When pressure turn towards pain behind the eyes it takes longer to focus.
Feet are ok atm but will moan more later and was screaming at me when I woke up. Pain often climbs up legs toward the knee. I will probably wake up doing the night by some lovely stabbing pain in ankles, where the leggiments joins the bones.
Hands and arms are buzzing feeling like they are swollen and I have to use extra strength to make a fist and I know I will not have the grip to mend a bike atm. Since steroids I have not been able to lift my arms up and above 45deg to the sides without much struggle and pain.
General mood has been close to meh, crap, bleh much more often since steroids. I also really can't be asked to do stuff and getting going is a right old drag. Getting me head around things, reading etc takes more to do.
Oh, that turned into a long moan/post, sorry. It has clearly gone worse in the last three months, before it was much more bearable, now it is very hard to ignore and getting on with things.
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Sorry to hear things have got much worse.
I'm on cetirizine hydrochloride and mometasone furoate daily all year round to try and minimise ENT fail - I don't get any noticeable side effects and I think they do help but I don't have SEID/CFS/ME which is a whole tricky badger when it comes to intolerances.
I hope the ENT bod has some ideas about worsening of your condition since starting them as the dose of steroid in the spray is ostensibly very low. I once had a GP take me off the nasal spray and my current GP (ex ENT registrar) put me back on and said worrying about steroids was nonsense as the dose is tiny cos it's topical and hardly any of it is absorbed into your system.
Moaning is allowed, it's your thread and your health problems do totally sound like shit, especially as no one seems to understand what's causing them or how to improve them at all. (Or indeed "sorry, there is no improvement cos foo").
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HA! The fecking NHS saga is still going on at full speed!
Utterly farcical.
Three months ago met with ENT specialist at Gisburn NHS, who also do private BUPA.
Got drugs prescribed. Use drugs up so needed more. Called about the houses to hunt down repeat prescription - GP, Gisburn NHS, BUPA and Blackburn NHS, as specialist also works there. Nobody knows nothing, but message gets to the right person and message gets send to my GP.
How do I know this, you ask? Well I fecking called around again a week later, didn't I and my GP has had the papers for a few days, did they let me know, naaa that would be a silly idea.
Yesterday, I get a call, between noise and fumbling fingers I managed to delete voice message. But managed to understand that something was afoot.
So spend this AM calling around the houses Gisburn NHS, Blackburn NHS and his private secretary, I managed to find that number online along with an email.
You see, I didn't want to rock up tomorrow to learn that I should have taken X or Y with me. And therefore we need to book a new appointment, in four months time.
Not one had a clue, to why someone wanted to call me. All they could say - you are not a patient here (BUPA), wrong Trust so not a patient here (Blackburn NHS), yes the appointment is still a go ahead (Gisburn NHS).
End afternoon, I get a call from the private secretary, nope sorry haven't got a clue. Will call back when he is back from work, you see I'm his wife.
Early evening I get a call from the person who left the message in the first place, from Gisburn NHS. Who has no clue about my ringing around the houses and left messages.
The reason for the call is that I don't need to come in tomorrow, because I haven't had an audio. Erm, youwhatnow?
Yes an hearing test, the specialist wanted me to have one. They have just figured out that I haven't been booked in for one.
Anywhoooo, I'm going there tomorrow anyway, because I think he needs to know what has been going on with my ears since we last spoke.
Feel free to copy and paste these random typed letters repeatedly after each other: A R G H !
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ENT specialist can't find anything, everything looks ok. Answered that he isn't a physician when I asked about the other ailments and that I need to treat the symptoms systematically, when asked what that means, he said paracetamols.
Oh well back to the drawing board.
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Ah, but they've seen you so they can tick the box. You're now low priority for waiting time.
I had this runaround 10 years ago for a different issue. The then health secretary was on the radio boasting about targets and delivery. I called the station but they would not let me talk live to the minister. I left my details. I was duly processed and fully treated within 5 months.
Politics and targets make poor bedfellows.
Good luck with your quest.
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Poop.
:(
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On the 3rd Dec. I ran out of nasal spray steroids, after being on them for three months. Since then everyday has pretty much been a bettering of my symptoms :)
When I started the steroids it all went a bit Pete Tong over a period of 2-3 weeks, everything just upped their effects. I felt more drained, fatigued, brain fogs, weak, pain, took longer to get over a bad day, more pain in arms, hands and feet - you name it. Didn't feel up to do anything, couldn't get my head around the idea of calling people, reading anything ended up with me just about making it past the headline and then I just stared at the screen/newspaper/book.
I had to go an buy long trousers for the first time in 20 years. I wrapped up like I was going out in at -10c snowstorm, in mild September and felt frozen to the bone. At night I have night cap, long sleeve base layer and thick socks on. We didn't have the two-three months of fighting to get the winter duvet out and if we should close the windows. Peli even stopped to curl up for a cuddle to get warm, because I was the ice cube.
Since coming off the steroids I have made the following changes: 1) I’ve been taking two homeopathic remedies as recommended by a friend who’s really into this kind of stuff; 2) I started an intensive nutritional supplement regime (intensive as I take them at six different points of the day) advised by Dr Myhill*. And 3) in January I will go on a new alkaline diet plan which should help clean my insides and reboot the system.
Yes, I know, snake oil, hippy dippy and old wives tales springs to mind, but since I haven't had any improvements from the normal quacks I'm giving this a go. As you can see on the blog post I have had some good reactions to homeopathy and herbal remedies.
Over the last two weeks I have felt the best I have felt in a long time, well three years. So much less pain, pressure, fatigue etc. Sam Valiant popped up and visited, we had a great time, nattered into the wee hours, had a walk in town and just general faffing about for two days. I was sure I would spend the next 1-2 days in bed, in pain, fatigued dead to the world, like "normal". But all I had to do was an afternoon kip, not because of being fatigued but because I was just a bit tired.
The last 2-3 nights I have woken up in sweat, even found my feet and legs outside the duvet. Even stopped sleeping with socks on. This big because I use to sleep just in boxers and a thin duvet and Peli moaning next to me that she was frozen in winter.
There is definitely something afoot in my body, since I stopped the steroids and started the supplements (yes I will post more about that later). It is hard to describe what it is - somewhere between pain and the feeling you have when you find out that you can move a sprained ankle more than yesterday, sore come relief that you are getting over the problem.
All I can say that day to day I'm getting better. Though I live in fear that it will backfire and I will spend the next few days immobile and in pain in bed. So the whole new regime has been put on a six month trial and error, to see what will happen.
See you on a ride on a bike in 2016? Because there are some miles that need to be clocked up :)
You can read more about it here (http://www.woollypigs.com/2015/12/a-new-year-solution/), more to come over the next few days/weeks for sure.
*/ http://www.doctormyhill.co.uk/ (http://www.doctormyhill.co.uk/) and her CFS approch (http://www.drmyhill.co.uk/wiki/Summary_of_my_approach_for_CFS_/_ME_sufferers.)
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That's brilliant, woolly :thumbsup:
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I'm looking forward to hearing more of This Sort of Thing. :thumbsup:
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Sounds good Woolly. :thumbsup:
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Great stuff Woolly!
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I must admit to a certain level of "erk the woo" but on the other hand I wholeheartedly approve of the idea of "patient as expert" taking control of your own life back from 'the medics TM' and rebalancing that power relationship a bit more. Studying the "professionalisation" of welfare and health/disability professionals and there's much scathingness about medics and whose interests they operate cos it's often not that of the sick or disabled person. I may well find myself reading Ivan Illich soon.
I hope some of these ideas work for you and you're able to identify what is general-good and what is general-harm and manage the balance of them accordingly for a better quality of health and life.
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Brilliant news, Woolly. Everything crossed for you!
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Glad you're seeing some improvement, whatever may be behind it (I'm a woo sceptic, but I do believe in weird reactions to medication, the placebo effect and good old fashioned coincidence). The temperature thing is particularly interesting...
Just don't overdo it because you're getting better.
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Oh yes this is snakeoil to me, but hey if I can fool my brain to to make me better I'm all for it :)
Thanks all.
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That's really good news Woolly. Let's face it, there's still so much we don't yet know about the mechanisms of this kind of injury and if you've found some snake oil that does the job then Fuckyeah.
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Just catching up with the latest. Don't quite know what's going on but clearly it's going onwards and upwards. :thumbsup:
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Great news woollie, hope it works out well for you :thumbsup:
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Oh yes this is snakeoil to me, but hey if I can fool my brain to to make me better I'm all for it :)
Thanks all.
Long before you need to start believing in the snake oil, you have, firstly, a cessation of a drugs regime formulated by people who were open about the fact that they don't know what is wrong with you, and secondly, a sympathetic person paying attention to your condition and thinking from a different viewpoint about stuff that has already done that might have caused it. If that comes with a load of a very dilute solutuion of H2O in water, then so be it.
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I think it's the supplements that are having an effect. Some to improve mitochondrial function such as DRibose which lots of CFS patients find helpful, plus antioxidants such as Q10, vitamins, lots of magnesium, Epsom salt baths, turmeric and neem as a natural antibiotic. It's a full-on regime. I'm less convinced about the effects of the homeopathic remedies, though Woolly has definitely reacted to them in the past.
I wouldn't call the supplements snake oil.
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It sounds like some of the improvement comes from cessation of the steroids too.
As for homeopathy, I do think it is quackery but I also wonder whether some of it is not actually homeopathic. That is, it might be "full strength" herbal remedies. For the rest of it, who knows the power of sugar water and a dash of alcohol?!
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It sounds like some of the improvement comes from cessation of the steroids too.
Definitely, but he's better than he was before the steroids, too.
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The theory behind the alkaline diet is bollocks, but the actual diet is pretty healthy.
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I must admit to a certain level of "erk the woo" but on the other hand I wholeheartedly approve of the idea of "patient as expert" taking control of your own life back from 'the medics TM' and rebalancing that power relationship a bit more.
This!
Oh yes this is snakeoil to me, but hey if I can fool my brain to to make me better I'm all for it :)
One of my favourite things about the placebo effect is how we can still be fooled by it even when we know we're probably experiencing it ;)
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In my view -- as I said below -- what Woolly is experiencing is not snake oil, or coincidence, or the placebo effect. He is not the kind of person for whom a placebo effect would work, anyway -- far too sceptical!
We reached the end of our tether and so started to research CFS/ME and Woolly's particular history ourselves - with the help of a good friend who is into non-traditional medicine. We stumbled across Dr Myhill, had a good look at what she was suggesting and saw that it appeared she had helped many CFS/ME patients in the past (anecdotal evidence from inhabiting various forums, FB groups, etc). We decided it could do no harm (paleo diet - we're already doing this; good amounts of sleep; high doses of nutritional supplements - multivitamins, organic Hemp Oil, Vitamin C at night, magnesium, Co-enzyme Q10, Acetyl L Carnitine, D-Ribose, Niacinamide and Vitamin B12, and extra magnesium through Epsom Salt baths x 3 a week). Given that the doctors have, at best, been dismissive and disinterested, we had nothing to lose.
So, we invested in this approach.
Woolly is now taking a large number of supplements of different kinds, at six different times of the day. The aim is to improve the function of the mitochondria in his cells and reduce the chronic, low-level inflammation in his body.
The ME Association is funding research into mitochondrial disfunction in CFS/ME patients, so it's not really "quackery" in my mind:
http://www.meassociation.org.uk/2015/07/new-award-from-the-mea-ramsay-research-fund-for-further-mitochondrial-research-20-july-2015/
http://www.meassociation.org.uk/2015/04/mitochondrial-dysfunction-and-the-role-of-cytokines-in-mecfs-preliminary-results-from-research-being-funded-by-the-mea-ramsay-research-fund-and-the-medical-research-council-2-april-2015/
So, you (and Woolly!) may call it snake oil/placebo/whatever... but I'd like to think that our research is paying off. Though, having lived through this awful time with him -- he was actually worse than he's let on on these pages -- I remain terrified that I'm wrong.
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At one time insulin was snake oil. Getting through the process of legitimising stuff like this can take a horribly long time and until stuff has been legitimised the medics won't touch it. If the process of development hasn't come through big pharma it's much harder.
Just because it's snake oil it doesn't mean it won't work.
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Thanks, Ruthie.
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To be honest even if it's purely placebo, does it matter? Good to hear about the improvements Woolly. Best wishes for a continued recovery (and hopefully some cycle miles) in 2016 and beyond :)
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Excellent news, whatever the source, hope the improvements continue.
As far as homeopathy is concerned, I've always thought there has to be a place for it in the pantheon of treatment, always allowing that it doesn't take precedence over conventional treatment when needed. It didn'ter oughter work, but equally it can't do much harm. I do get a little concerned with quasi-scientific explanations used by alternative therapy, those are occasionally potentially dangerous. For example, Mrs Ham is taking apple vinegar to potentially help arthritis, the "explanation" given appears to be that it is replacing substances in the joints, which seems suspect at best.
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FWIW my mother used to swear by cider vinegar and molasses for her arthritis. She died.
She was well into her 94th year though.
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To be honest even if it's purely placebo, does it matter?
Not as far as Woolly's concerned, at present, no. But there are lots of folk out there suffering, and Woolly might get worse again, so a rational explanation of why this treatment appears to be working could be helpful to him and others. This is a much-neglected disease with NICE's focus being on (useless for many sufferers) psychological therapies.
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All the best with this.
As mentioned by barakta, one positive aspect of this approach (aside from the hoped-for symptom reduction) is that it allows Woolly to resume a degree of control that should have knock-on benefits.
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This is splendid news and, hopefully, the kickstart for some steady progress in 2016.......as well as more jaunts in your pimped-up campervan.
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Thanks, everyone. Woolly's off preparing his latest dosage... This one tastes nasty so he's not looking happy.
... but he looked well happy this morning, walking in the sunshine round our local res. Long may that continue. :)
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Yay for increased activity management even if some of the factors taste nasty...
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... but he looked well happy this morning, walking in the sunshine round our local res. Long may that continue. :)
:thumbsup: :thumbsup: :thumbsup: :thumbsup:
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In my view -- as I said below -- what Woolly is experiencing is not snake oil, or coincidence, or the placebo effect. He is not the kind of person for whom a placebo effect would work, anyway -- far too sceptical!
You'd think, but an (admittedly small and short-timeframe) study showed that giving people drugs with PLACEBO printed on the bottle can actually 'work' to treat symptoms (http://www.theguardian.com/science/2010/dec/22/placebo-effect-patients-sham-drug)…
Personally I don't think it really matters whether the treatment someone gets is a placebo or not. If it works and isn't causing anyone harm…
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There is a significant ethical problem is pushing remedies that we know have no remedy in them, on the grounds they may have some psychological mode of action. Placebo doesn't cure cancer, it's effective primarily for self-limiting conditions with a strong (or complete) psychological element. Relying on a 'lie' to deliver treatment should give any doctor substantial ethical questions. It might work, and I'm glad if it does, but on a wider scale it can cause harm when people assume that it is an alternative to real medicine.
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There is a significant ethical problem is pushing remedies that we know have no remedy in them, on the grounds they may have some psychological mode of action. Placebo doesn't cure cancer, it's effective primarily for self-limiting conditions with a strong (or complete) psychological element. Relying on a 'lie' to deliver treatment to give any doctor substantial ethical questions. It might work, and I'm glad if it does, but on a wider scale it can cause harm when people assume that it is an alternative to real medicine.
Quite. I wouldn't have anywhere near the same thoughts as I'm having in this situation if the case were of someone who had completely eschewed "real" medicine in favour of homeopathy or similar. However, when someone has tried "real" medicine and it's failed, and they're finding alternative medicines cure their symptoms, or when someone has a terminal condition that "real" medicine cannot cure and rather than relieves symptoms creates new ones… I see no problem, honestly.
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I wouldn't say the nutritional supplements Woolly's taking are at all similar to homeopathy. I'm sure that there are even some "real" doctors who take nutritional supplements themselves, and/or recommend them to their patients.
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I wouldn't say the nutritional supplements Woolly's taking are at all similar to homeopathy. I'm sure that there are even some "real" doctors who take nutritional supplements themselves, and/or recommend them to their patients.
No, but when I said that I was thinking the things Woolly referred to as "homeopathic remedies".
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OK. I have more confidence that it's the supplements that are working at the moment.
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Just been catching up on this thread and read the links woollie posted earlier.
If the underlying problem is mitochondria malfunction or reduction of, I have read some studies that point to PQQ as a nutrient which encourages mitochondrial growth and anti oxidants to battle with free radicals which can attack mitochondria.
I could be talking rubbish, but maybe worth a look.
http://www.vegsource.com/pahy/pqq---an-essential-micronutrient-that-helps-you-thrive.html
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OK. I have more confidence that it's the supplements that are working at the moment.
Based on what I know about homeopathy, I think you're probably right. (I wasn't trying to be a dick, sometimes I can be bad with words and tone when written down… apologies.)
(I've medical training from a couple of different angles, and take supplements myself…)
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Don't worry, Katie. It's a tense time and I'm a bit on edge. Sorry!
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Just been catching up on this thread and read the links woollie posted earlier.
If the underlying problem is mitochondria malfunction or reduction of, I have read some studies that point to PQQ as a nutrient which encourages mitochondrial growth and anti oxidants to battle with free radicals which can attack mitochondria.
I could be talking rubbish, but maybe worth a look.
http://www.vegsource.com/pahy/pqq---an-essential-micronutrient-that-helps-you-thrive.html
thanks, John. That looks interesting. I see pqq sometimes comes with ubiquinol which Woolly's already taking.
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Don't worry, Katie. It's a tense time and I'm a bit on edge. Sorry!
No need to apologise, we're all pals here, I hope :)
I must admit there's a large amount of fear whenever I see anything like this, I was diagnosed with ME in 2011 and whilst I don't remember being in as much pain as woolly seems to be in, and although I'm basically in remission now, I'm always conscious of possibility of relapse and it being worse next time… am very very glad for you both that what he's trying seems to be working!
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Really pleased that things are going in the right direction for you woolly :thumbsup:
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Late to the party but again really pleased for you.
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What a difference a day makes.
Find your rabbit feet and stroke them, while throwing salt about, do what ever offering that is needed for best wishes, to whatever gods you might be following.
Since I got onto the supplements I have only felt better, all my ailment are pretty much ... poof gone \o/
The biggest thing I can moan about is the discomfort in my feet when I wake up, which is over in the time it takes to put trousers on.
I'm now stuck between "disbelief that this is happening" and "do not over do it" (because I'm itching to get on with it and don't want it to backfire). I have decided that Jan is a total rest month, come Feb and March I will start to build it up slooooowly with longer walks with the mutt. Before I can declare myself "cured". I wear a step counter and right now my "rest days" are about 1500-2000 steps more than my active days before I started the supplement regime.
Now please don't pinch me awake, because I like this dream :)
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Great to hear Woolly, long may it continue!
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\o/
I look forward to hearing more :)
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The news is starting to sound positively positive. Good stuff.
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Wonderful news. Please continue to sleep and not snore.
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Good news indeed.
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Excellent news Woolly! :thumbsup:
Put your trousers on quickly.
That way the discomfort will be gone quickly ;)
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Here's hoping for continued good news on this front!
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Excellent, Wooly - I quite understand not wanting to overdo it, but hopefully you can get on without worrying about that *fingers crossed smiley*
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Thanks all :)
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Very pleased to hear this Wooly. Take it easy!
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Yay \o/
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Excellent news!
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WOO and indeed HOO :thumbsup:
Long may it continue
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This is great news...so pleased for you both.
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Wow - excellent news. Onwards & upwards. :thumbsup:
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Don't want to say anything in case it jinxes you Woolly.
Doing a special handshake for you now.
:-\ :P :-X :-X ::-) :-*
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:thumbsup: I hope this trajectory continues.
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Good news, let's hope it gets only better.
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I have told everyone in Derbyshire to cross everything they have for you, Mr WP.
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Thanks all.
Great news, today I did some carving - hardwood and not for too long - and my hands are not moaning at me at all :)
Could this really be it?
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Hoping so :thumbsup: As long as none of these supplements are contra-indicated with beer :D
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One thing I have found on this quest, is that ale/homebrrw don't interfere with my ailments \o/
Junk food, ready meals/sauses and even some restaurant made dishes do.
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One thing I have found on this quest, is that ale/homebrrw don't interfere with my ailments \o/
Junk food, ready meals/sauses and even some restaurant made dishes do.
Pleased the beer's okay. That really would have been intolerable.
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Really pleased for you Woolly! :-*
Hopefully a great summer of cycling awaits :thumbsup:
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Really pleased for you Woolly! :-*
Hopefully a great summer of cycling awaits :thumbsup:
Yup agreed, though my approach will be more laid back ... Did you get the hint there :)
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This thread gets betterer and betterer.
*does a little happy dance on Woolly's behalf. Finds oneself lying in bed so it doesn't really work*
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Really pleased for you Woolly! :-*
Hopefully a great summer of cycling awaits :thumbsup:
Yup agreed, though my approach will be more laid back ... Did you get the hint there :)
I reckon this would be a great machine for you and Peli!
(http://i411.photobucket.com/albums/pp200/mountainaerie/IMG_5180.jpg)
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HA! we tried a "normal" tandem and that was no go, ok we did ride it but it will not work in the long run :)
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That's a point - have you tried something like a Hase Pino?
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I don't think Woolly would be too happy with me driving and I think I'd struggle to hold him, at 30 kilos more than me. Looks fun though!
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hehe, I don't think that Peli will be able to hold me and her and panniers. Along with that she put her foot down on the wrong side of the bike. That was fun the one day we tried out a tandem but for longer periods, I think something will happen :)
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I don't think Woolly would be too happy with me driving
As if by magic, this just appeared in my twitter timeline:
https://twitter.com/KineticsGlasgow/status/694587249191735300/photo/1
and I think I'd struggle to hold him, at 30 kilos more than me. Looks fun though!
...that might be more of an issue, though easier with the COG lower down than on an upright tandem.
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Went to the CFS/ME clinic, yesterday, to chat with the occupational therapist who noticed that I look better. She was also rather surprised that this have happened this fast. Said I did a good thing about taking it so easy. Many have set backs because they have hit the ground running on the first day of feeling a wee bit better. I have clearly jumped ahead of what they had planned for me, so therefore she could nearly sign me off. Though she would really like to see what my process is, so we are chatting again in 4-5 months, normal chat are every 1-2 months.
Yes, there might be an interest to keep me on their books, so that they can tick me off as a successful cured case. I will make sure that in the goodbye feedback, I will tell them what is what. As I have already told them that it was not their cure that make the big (good) changes.
The occupational therapist said she had heard about Dr Myhill, though made a point/note that GMC have questioned her approach. To which I told her that all seven meetings has been cancelled by GMC shortly before the date. She also acknowledge that some of the things Myhill have pushed for are not being researched by NHS and the ME association. Along with that it might be an reaction to the many vaccination I had, followed by the stress and physical activity.
She will chat to her team (this is one thing I like about Leeds CFS/ME they have a team that chat/meet about each case) about Myhill, supplements, diet (whole30) etc. And really wanted to hear from me even if I don't worse.
Today we went to a Pilate starter session. There was one or two movements that I had to stop doing as I could feel the pain in my hands and arms coming back, gently. But mainly I just layed there and grinned. Because I was able to do movements that I haven't been able to do over the last three years, either because of it was impossible or the agonising pain it would cause. I was "active" for an hour and I just feel a wee bit tired, like when you have exercised. And there is no sign of pain coming to hunt me, as it has done over the last three years.
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Brilliant, I am so pleased for you.
Look forward to actually meeting you on a ride one day.
Chris
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Chris, that is so on :)
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That is such good news Woolly. :D
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Yes, really pleased.for you. Maybe we will get a ride one day.
Mike
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Mike and others - don't worry the Woolly and Peli Pootles WILL return northern stylee :)
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But not right away... Tiny, slow steps, remember. ;)
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Slow steps indeed. But great news :thumbsup:
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So glad to read that things are improving for you, Woolly!
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Great news on the improvement and YES ABSOLUTELY to the feedback to the 'medics' about how it wasn't them wot did it. I've been there done that a few times and wanted to say "No thanks to YOUR advice which was hopeless".
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Still going forward. Enjoying this! Though now got a bike and am coming down the the plague that Peli has been fighting with for the last week. Though still managed 9 Miles in 45min on the turbo today. Might hit the local super market car park on Saturday in the early am.
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So glad things are still going well.
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Truly got better with taking the drugs/potions and pilates have also helped a lot and having the recumbent haven't hurt at all.
Though there is a few movements that I know I can't do. Sadly I have learnt that one of them the hard way, laying on a roller - 6" dia and 3 feet long. This have killed my back, near the spine, between my shoulder blades. First session hurt for a few days and went, second session where I did less time/movements has not stopped for about two weeks now.
Peli has been down with a bad asthma attack along with her second bug/flu/plague in a month and I finally succumbed. So I woke up yesterday with a full body ache and pain in my arms. This is the first time since early Jan my arms have hurt. only 2-3 on a scale to 10 where I often used to have 8. Today I'm not 100% but much better, no pain in arms but the back is killing me as it had moved further south and north, e.g. mid back and neck.
The interesting thing is that I never suffered with pain between the shoulder blades on the spine, never felt a problem or lack of movement there. But two of the physios I have meet have said that I'm rock solid there, both has tried to loosen it and had to work hard on that area. Though the only "gain" was more pain in my hands and arms. One physio said that she felt that my problems stemmed from that area, as the muscles squeezed my spine and nerves. The two MRI scans they showed nothing and the specialist said naa that is baloney.
I will book in for a sport massage with a fella that helped Peli with her bad back, see if he can mend mine.
Grand news is that I can still ride my bike even with a bad back and it has not made it worse. But sadly this last week I haven't had the time, taking care of Peli, keeping an eye on the builders and winter showers.
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Myofascial pain is quite poorly understood. Glad you're getting better! Keep at it. Hope Peli getting better too.
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It's good to hear things are getting better! I can (to a small degree) sympathise as my left hand/wrist give me spasms of pain if I am not careful, including overnight suffering. I overdid the building work. As well as being prone to overdoing things, I tend to hold the work piece (heavy) with my left hand and hold implements (light) with the right. Changing the way I work has helped enormously and it's mending albeit slowly.
(The doc, not my usual, said it was arthritis*, you're getting old, goodbye!
* which, unless t'internet is totally wrong, it isn't.)
GWS both.
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Myofascial pain is quite poorly understood. Glad you're getting better! Keep at it. Hope Peli getting better too.
I'm not sure pain is well understood in general, and certainly there aren't enough pain specialists or easy access to them and GPs don't get enough training on it being the frontline supporters of people with pain issues.
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http://www.woollypigs.com/2016/10/thank-you-dr-sarah-myhill/
Coming up to four years and never felt better, she (Dr Sarah Myhill) must be onto something :)
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:thumbsup: :thumbsup: :thumbsup:
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Great news!
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That was a good read woolly and really helpful information too. I've been talking to daisyhill about it and she takes the WellWoman supplements which have most but not all of the ingredients in Myhill's recommendations. It would probably help if dh took the supplements regularly instead of for a week then forgetting for two weeks. Anyway - congratulations I hope the increasing fitness continues.
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Thanks all. Yeah, Graeme the key is to taking them everyday, when I forget I feel it.
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And it's quite an intensive supplement regime, with high doses. Woolly now takes different pills/powders at 4 different times of day. I'm sure we can share our dosage and supplement purchasing spreadsheet with daisyhill if that would be helpful to her.
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Thank you - I'd be interested in seeing that. IM?
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I've shared that with you, Graeme. Hope it helps.
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I've shared that with you, Graeme. Hope it helps.
Daisyhill and I really appreciate that Peli - it has made interesting reading. We're thinking how we manage her forgetfulness when it comes to taking supplements regularly. :)
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Set reminders on phone, it helped me, though now after 10 months it is a habit
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I use an app called Medisafe to set reminders to take medication. V useful.
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This all sounds so obvious, but even smart people like us don't immediately figure this out. DH likes the idea of phone alerts... "Take tablet" for example. If probably go down the app approach, but she seems happier with simple solutions. :)
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I just use Google calendar, since I'm hooked in there anyway, so it reminds me on my mail, calendar, phone etc so I can miss it