Anyone here suffer from Reynaud's syndrome / use heated gloves?

[Jurek]

As above.
I'd be interested to hear from anyone who suffers from it and how they combat it.
S'for a friend.
TIA
JB

[L CC]

Mr Smith uses all sorts of strategies including those chemical heaters. I have a vested interest, what with him operating the controls, so make sure he is very well gloved up.

I understand bodach otp has used heated shoes with some success. 

[Jaded]

A thin pair of fingerless gloves inside an outer pair.

I have some great Rohan gloves I wear off the bike, but they don't give me enough flexibility on it.

[Kim]

This might be a good moment to mention the wonder that is silk glove liners.  Makes soggy gloves so much more pleasant.

[Jurek]

Silk glove liners are fine - I use them myself.
This individual has tears of pain streaming down her face on the sort of day where its not cold enough for me to be using silk liners meanwhile, she is togged up in bulky ski gloves.
I don't think silk liners will help much with her Reynauds.

[PaulF]

Another Reynauds sufferer asked a similar question on the Singletrack forum here:

http://singletrackworld.com/forum/topic/heated-insoles-or-heated-socks

They even posted a link to a spreadsheet with their research - haven't followed it myself.

When it's really cold I use a pair of 'pogies' they work better on flat bars but are OK on drops. Mine are from hotpot.co.uk. Can ride in the winter with summer gloves on, they're both rain and windproof.

[JonBuoy]

When it's really cold I use a pair of 'pogies' they work better on flat bars but are OK on drops. Mine are from hotpot.co.uk. Can ride in the winter with summer gloves on, they're both rain and windproof.

I assume that that should be http://www.hotpog.co.uk

[Sergeant Pluck]

My late best pal had this. One thing I can recall him mentioning is that if the extremities get cold during a glove-free period or even before putting the gloves on, they will never get warm again outside no matter how effective ones gloves might be. In other words some planning is involved to avoid having to do things that require gloves to be off even for short periods.

[bikepacker]

My wife has suffered with Reynard’s Syndrome for many years. She has experimented with most makes of gloves and glove liners. She is now trying some heated liners that have a small battery pack attached, the brand name is Warmerwear.

Unfortunately she has found some of the top branded winter cycling gloves such as Sealskinz and Extremities to be among the least warm. As for ordinary liners the only one she thinks helps are the Marmot ones, pure silk don’t help at all.

I will let you know about the heated liners after we have had a really cold spell.

[Kim]

Silk glove liners are fine - I use them myself.
This individual has tears of pain streaming down her face on the sort of day where its not cold enough for me to be using silk liners meanwhile, she is togged up in bulky ski gloves.
I don't think silk liners will help much with her Reynauds.

I wasn't implying they were a complete solution.  Just a potential part of one.  Given Reynauds-level circulation, I agree an actual heat source is required - no amount of insulation will warm something without a heat source.

[fuaran]

+1 for pogies. They can make a huge difference to keeping my hands warm. Plus you can wear some fairly warm gloves inside the pogies. Should be space to attach some sort of heating pads inside as well if you wanted.

HotPog are nice, the basic model works fine for me (on flat bars). Or the have more expensive arctic versions etc, not tried those. http://www.hotpog.co.uk/pogies
Or Bar Mitts also have versions for drop bars etc. http://www.barmitts.com

[chrisbainbridge]

I speak as a doctor rather than a sufferer but have some interest in the subject.  It is vitally important as other people have said that you keep your warmth from the start.  There is some evidence that the ears can be a potent trigger for Raynaud's.  I would therefore always recommend using a hat with ear muffs when outdoors.

I think it is essential that people suffering from Raynaud's should also use winter cycling boots.  Standard cycling shoes with carbon fibre or nylon soles and air vents will allow far too much cold air in.

I would also recommend using something such as deep heat on the feet and/or the hands before setting off to increase the local blood supply.  If this is not enough then the use of vessel dilator drugs can be of benefit.  GTN cream is also highly effective.  One option that is probably underutilised but might well be worth investigating on a private patient basis would be injection of botulinum toxins around the small blood vessels in the hand at the onset of winter.

[hellymedic]

My fingers go white when cold but I am little bothered by this as I'm seldom out of doors and I don't have pain.

I think it's important to keep the body as warm as possible so warm blood is pumped to the extremities.
The 'heat loss zones' are often given little attention but should be well-wrapped to help the extremities. These are the
Head, neck and ears
Ankles and
Wrists

There is very little fat or muscle in these places so heat is neither generated nor retained.

Keep the wind off and wear wrist/ankle/ear warmers.

[Jurek]

My late best pal had this. One thing I can recall him mentioning is that if the extremities get cold during a glove-free period or even before putting the gloves on, they will never get warm again outside no matter how effective ones gloves might be. In other words some planning is involved to avoid having to do things that require gloves to be off even for short periods.

I witnessed this with Miss Mouse from LFGSS when we were hanging around during rehearsals for the Limp Icks opening ceremony.
It got to the point where her discomfort was such that there was no point in doing anything else other than go home - there was no way that she was going to get warm again, and that was May or June of 2012.

[hellymedic]

Keep producing heat: move, eat, drink.
Avoid standing or sitting still.

[jamesld8]

Whilst don`t have Reynauds I do get very very cold hands at times, which I then  find very difficult to warm up again(go sort of waxy white, ) so avoidance strategy includes silk liners (very good) or if really chilly use winter mountaineeering gloves eg Extremities Munros or RAB winter gloves---not padded but very toasty with polartec insulation

[Kim]

Keep producing heat: move, eat, drink.
Avoid standing or sitting still.

That's fine until you get lost or have a mechanical or whatever.

My circulation's adequate, so hands and feet aren't a particular problem, but I do a good line in getting the shakes and having great difficulty getting warm again (usually requires a hot shower or getting back on the bike and attacking a proper hill).  I assume this is why audax controls are traditionally located just before a big climb

[hellymedic]

Keep producing heat: move, eat, drink.
Avoid standing or sitting still.

That's fine until you get lost or have a mechanical or whatever.

My circulation's adequate, so hands and feet aren't a particular problem, but I do a good line in getting the shakes and having great difficulty getting warm again (usually requires a hot shower or getting back on the bike and attacking a proper hill).  I assume this is why audax controls are traditionally located just before a big climb

A cold outdoor control left me with a heat deficit I couldn't really tackle so I packed and headed for McDreadful's, where I had a hot chocolate and 'food'. I was still too cold for a couple of hours.
That was in the days before I started getting white fingers.

[Ham]

Mrs Ham's sister has it, fairly advanced now, and uses heated gloves etc. We are more than a little concerned that Miss Ham may be showing very early signs; as an onlooker I always have to remember that she probably IS that cold.

[mrcharly-YHT]

Keep producing heat: move, eat, drink.
Avoid standing or sitting still.

That's fine until you get lost or have a mechanical or whatever.

My circulation's adequate, so hands and feet aren't a particular problem, but I do a good line in getting the shakes and having great difficulty getting warm again (usually requires a hot shower or getting back on the bike and attacking a proper hill).  I assume this is why audax controls are traditionally located just before a big climb

Does having a hot drink help you at all?

I seem to recall helly giving a detailed description of why cold on the kidney area affected other bits of the body. A professional mountain guide on the bushcrafting forum has recommended wrapping a scarf around that area of the body - maybe this would also help people with reynauds?

[Kim]

Keep producing heat: move, eat, drink.
Avoid standing or sitting still.

That's fine until you get lost or have a mechanical or whatever.

My circulation's adequate, so hands and feet aren't a particular problem, but I do a good line in getting the shakes and having great difficulty getting warm again (usually requires a hot shower or getting back on the bike and attacking a proper hill).  I assume this is why audax controls are traditionally located just before a big climb

Does having a hot drink help you at all?

I'm not sure, but I'm not really very good at hot drinks, not being a fan of tea (understatement) and preferring the smell of coffee to the taste.  I'll drink hot chocolate where available (if I'm clever, I'll bring a sachet or two with me), but I tend to wait until its temperature has dropped to the point that it doesn't leave my tongue numb for the next few hours, which is probably not hot enough to be of significant benefit.  I don't understand how people can bear to drink steaming hot liquids.

What I tend to do on winter rides and cold night rides is carry plenty of extra layers (down jacket if it's properly cold) and put them on as soon as I stop, while I'm still warm.  And make sure I do any bike faffing, refilling of water bottles etc first so I don't have to go back outside and hang around in the cold before setting off again.  I'll check the temperature (bike computer with a thermometer is very useful) and take most of the layers off before setting off again, much to the confusion of everyone doing the opposite.

The tricky one is the Friday Night Ride to the Coast, and its regrouping stops of unknown duration.  You might be there for a half a minute, or it might be ten, depending on what's going on at the back, and you won't be popular if you have to stop to remove layers and put them away when the call to set off again comes.  Best method there seems to be to ride nearer the back of the group in cold conditions, so you can maintain a more even power output and spend less time hanging around.

[Ningishzidda]

I only get Reynauds when I'm particularly stressed out and anxious.

I suppose that would be psychosomatic.

[Ningishzidda]

My most recent bout was last Saturday morning. I became particularly bothered about my GF’s gas cooker which had stopped working, and a quote for repair was £230. When my GF and I went shopping, I noticed the Reynauds.
We spent a relaxing hour in an Italian gelato parlour discussing the advantages of buying a new electric cooker and throwing the gas cooker out. Within the hour, I had Googled John Lewis and ordered a new cooker. Also, my fingers were back to normal.

Therefore, the cure for Reynauds is an ice cream, and buy your loved one something expensive.

[Jurek]

Thanks for the replies everyone. Please keep them coming, I know that some of your suggestions have been a revelation to the individual concerned.

Thinking about it I probably should've put this in the 'Health & Fitness' board.
If any mod would care to shift it there, I'd be grateful.

EDIT - Just realised, I can do this meself

[Chris S]

It's likely my Reynaud's is associated with Alpha-1 Antitrypsin deficiency (excessive vaso-constriction from elevated ACE).

It's not always associated with being cold - although being cold will more often than not, set it off. But it can also kick off when I'm seemingly warm and happy on a summer's evening - but interestingly, it could be drinking a cold drink that triggers it then - I'd have to conduct some trials.

It can be particularly bad when getting back on the bike in winter, after a stop (eg: a control on an audax). My hands will typically go completely white and dead. We've had to push the tandem up hills before now, because I was unable to work the gear levers. Bashing my hands on my thighs seems to eventually fire up the circulation again. It's also much worse in my hands than my feet.

I can often get it while driving; usually just one or two fingers on each hand.

My Mum, and her Mum used to get it.