Author Topic: Recovering from CFS- was ouch! cycle tourer suffering numb, painful hands, arms (Read 67289 times)

Polar Bear · « **Reply #375 on:** 04 December, 2015, 11:24:40 am »

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.

Graeme · « **Reply #376 on:** 04 December, 2015, 07:37:10 pm »

Poop.

woollypigs · « **Reply #377 on:** 26 December, 2015, 04:54:21 pm »

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, more to come over the next few days/weeks for sure.

*/ http://www.doctormyhill.co.uk/ and her CFS approch

Deano · « **Reply #378 on:** 26 December, 2015, 05:08:44 pm »

That's brilliant, woolly

Wowbagger · « **Reply #379 on:** 26 December, 2015, 05:20:16 pm »

I'm looking forward to hearing more of This Sort of Thing.

Canardly · « **Reply #380 on:** 26 December, 2015, 07:15:00 pm »

Sounds good Woolly.

Peter · « **Reply #381 on:** 26 December, 2015, 07:18:49 pm »

Great stuff Woolly!

barakta · « **Reply #382 on:** 26 December, 2015, 07:58:32 pm »

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.

TimC · « **Reply #383 on:** 26 December, 2015, 11:52:59 pm »

Brilliant news, Woolly. Everything crossed for you!

Kim · « **Reply #384 on:** 27 December, 2015, 12:11:24 am »

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.

woollypigs · « **Reply #385 on:** 27 December, 2015, 12:29:22 am »

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.

Ruthie · « **Reply #386 on:** 27 December, 2015, 09:22:16 am »

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.

Cudzoziemiec · « **Reply #387 on:** 27 December, 2015, 10:44:59 am »

Just catching up with the latest. Don't quite know what's going on but clearly it's going onwards and upwards.

JohnR · « **Reply #388 on:** 27 December, 2015, 01:56:33 pm »

Great news woollie, hope it works out well for you

Wowbagger · « **Reply #389 on:** 27 December, 2015, 01:57:20 pm »

Quote from: woollypigs on 27 December, 2015, 12:29:22 am

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.

peliroja · « **Reply #390 on:** 27 December, 2015, 03:01:16 pm »

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.

Cudzoziemiec · « **Reply #391 on:** 27 December, 2015, 07:43:36 pm »

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?!

peliroja · « **Reply #392 on:** 27 December, 2015, 07:51:18 pm »

Quote from: Cudzoziemiec on 27 December, 2015, 07:43:36 pm

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.

Ian H · « **Reply #393 on:** 27 December, 2015, 08:27:24 pm »

The theory behind the alkaline diet is bollocks, but the actual diet is pretty healthy.

Katie · « **Reply #394 on:** 28 December, 2015, 02:19:56 pm »

Quote from: barakta on 26 December, 2015, 07:58:32 pm

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!

Quote from: woollypigs on 27 December, 2015, 12:29:22 am

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

peliroja · « **Reply #395 on:** 28 December, 2015, 06:32:00 pm »

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.

Ruthie · « **Reply #396 on:** 28 December, 2015, 10:01:47 pm »

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.

peliroja · « **Reply #397 on:** 28 December, 2015, 11:41:35 pm »

Thanks, Ruthie.

mcshroom · « **Reply #398 on:** 29 December, 2015, 01:38:21 pm »

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

Ham · « **Reply #399 on:** 29 December, 2015, 02:31:54 pm »

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.