Raynaud syndrome and race in cold water

I have Raynaud syndrome.

How do you cope with cold water races in spring time?
When my core is cold, my hands and feet get totally white, sensitivities and mobilites are gone.
I have a hard time doing anything with my hands, and can’t feel my feet ( one time my cycling shoe came off while transition and I didn’t even notice i was running on bare foot)
Blood flow comes back after maybe 30 minutes of hard cycling if the temperature is not too cold.
I know there is hot pads options. And I do use them when running or cycling in cold weather.
The thing is, my hands are totally useless in transition from that swim to the bike.

Do you have any tips? Experience?

I think I’ve read these other places, but check with USAT to confirm:

  • If it’s wetsuit legal, anyone can wear booties

  • If it’s wetsuit legal, and you have a doctor’s written diagnosis of Raynoud’s, then I think you can also wear gloves. Just don’t wear ones that have webbing between the fingers. Talk to the referee or race director before the race so that they’re aware. Provide a copy of the letter, in case they want to confirm its authenticity.

Other options include: topical capsaicin or other skin warming products (“embrocation”), topical niacin (dilates the vessels) to counteract your vasospasm, or possible calcium channel blocker medication (pill - i.e. nifedipine) if you can tolerate (most common issues here are hypotension and/or headache).

Thanks so much for the info.
I will definitely check on that.
Getting a diagnostic signed by my doctor is a great idea.
I am going shopping for booties and gloves for training if anything. Our lake is cold and won’t warm up enough until the middle of summer. It will make my life easier for sure!
I do already have a neoprene cap to keep my head warm and it helps. I wear it under my other cap.

:0)

I have Raynaud syndrome.

How do you cope with cold water races in spring time?
When my core is cold, my hands and feet get totally white, sensitivities and mobilites are gone.
I have a hard time doing anything with my hands, and can’t feel my feet ( one time my cycling shoe came off while transition and I didn’t even notice i was running on bare foot)
Blood flow comes back after maybe 30 minutes of hard cycling if the temperature is not too cold.
I know there is hot pads options. And I do use them when running or cycling in cold weather.
The thing is, my hands are totally useless in transition from that swim to the bike.

Do you have any tips? Experience?
I’ve never been officially diagnosed, but I’ve suspected I’ve had this for years. I lose feeling in my fingers walking through the refrigerated section of a grocery store. I’ll do running races with no shirt and still wear gloves. It seemed worse when I was just 4 or 5 lbs lighter than I am now, 158 opposed to 163 but I can’t even pick up a piece of ice on a 80 degree day without losing feeling in my fingers. I’ve learned to suck it up in cold weather not getting feeling back in my toes till 4-5 miles down the road on a run and I don’t ride my bike on the roads unless it’s mid 50’ or above or a race and I have no choice.(thank god for the computrainer) Can’t swim to speak of but I used to dive, problem was I was much younger and don’t remember having as much problems then. Don’t have an answer but you’re not alone.

JJ

I hear you JJ

I can suck it up. I have been. But as we get exposed, it will eventually get worse not better. I froze my toes numerous times this winter. The end of my toes are very colorful … I used hotpads a lot although I froze them mainly when doing other stuff like shoveling or going grocery shopping …
Anyway, I am sooooooo getting booties and gloves for training! I am exited about this actually!

I hear you JJ

I can suck it up. I have been. But as we get exposed, it will eventually get worse not better. I froze my toes numerous times this winter. The end of my toes are very colorful … I used hotpads a lot although I froze them mainly when doing other stuff like shoveling or going grocery shopping …
Anyway, I am sooooooo getting booties and gloves for training! I am exited about this actually!
The real bitch about it is how long it takes to “thaw out”. I’ve grabbed a couple handfulls of ice to load a water bottle on a 70 degree day and it takes 10 minutes before the fingers come back to normal.

JJ

I have a pretty bad case of Raynaud’s also, but it doesn’t occur during races. I figure my heart rate gets high enough to keep good circulation. And of course a good wetsuit to keep the core warm.

Also, I never have this problem doing cold winter runs (in Ottawa, at -20C). Until about 10 minutes after I stop. Again, I believe it’s heart-rate related.

For long cross country ski outings in very cold weather I’m fine with hot shots in gloves/mitts and in boots.

The worst time for me is driving home on a cold day, or even a cool day, after a sedentary day in the office. Again, I believe it’s the low heart rate resulting in this problem.

My solution - keep the heart rate high. Super-fast transitions!

Sweety-Lots of good advice so far. For those readers who may not know (or who may have it and wonder) Raynauds Syndrome is the discoloration and numbness of the fingers that many adults see in response to cold (or sometimes changes in emotion.) The fingers turn snow white and are pretty useless in trying to type. In a few minutes, as the fingers begin to warm, they turn blue then a purple-red with a “pins and needles” feeling before they normalize. This whole process can take from just a few minutes to an hour and can be quickened by immersing ones hands in warm water. Women seem to get this more than men, 2nd to 4th decade of life. As you can tell from rroof, there are medical answers to this, and especially medicines to avoid which might increase the frequency of attacks.

That said, I’ve had it for 30 years. My Mom and sister are both effected. And mostly we just live with it. I use chemical hand and foot warmers biking in the winter, and when it’s below freezing I have some Sidi rechargeable warming inserts for my winter biking boots (they’re not cheap). It’s all just a matter of preparation.

Ten years ago, when I went to England to swim the channel, knowing I was mixing cold water (54-57 degrees with out a wet suit) and Raynauds, I took my camera and some white poster paper for back ground and got some really great shots of how bad ones fingers can look! I sent them in to one of the medical magazines for publication…but they sent them back. (Yawn, they’d seen it all before.)

So, welcome to the world of Raynauds Syndrome, it’s an inconvenience but not much more. Good luck.

John you are describing it very well. This is exactly what happens to my toes and fingers.

I have lived up north for over 20 years and I attribute the condition to freezing my toes and fingers numerous time out on the land. Damaging nerves. Some people get the disease past on in their genes or whatever other conditions.

I am now wondering about another possibility to having the condition. Nerves function and vitamins deficiency? Ever heard of anything of the sort?

I have celiac or intolerance to gluten or wheat products. In which case I do not digest food the way it is supposed to therefore not getting nutrients from that source of food. I was very very low on Iron last winter for no apparent reason and I am attributing the deficiency to that.

I heard lately that their is a connection between celiac disease and Raynaud syndrome. I am trying to figure out why.

Any thoughts on that?

I’m a fellow Raynaud-er. However, I can tell you one thing for sure, do not use medications that will dilate your blood vessels. In theory, this is a great thing, because the arterioles are constricted and you aren’t getting enough blood into those areas. However, unless you extensively test, how do you know how much you’ll need? If you over dilate the vessels, you will radiate the heat right out your hands and feet. The other problem…if you take a pill, you will dilate ALL your vessels, and that often results in a drop in blood pressure and/or a rise in heart rate, neither of which helps with a race. My advice is the chemical heat also. Your could duct tape them to the outside of your shoes, as we tend not to have enough room to shove them IN the shoes (besides, duct tape fixes everything). You could try a topical appliance of a vasodilator, but PLEASE make sure that it is not a potent one, and will not spread past the area it is applied to, and try it out before you race. I couldn’t feel my feet until the last part of the run in the Ironclad Tri last year, myself. I can tell you that during the run to transition, do your best to stay off pavement, as the hard ground will hurt 10 times as much. Another idea I heard was to have a bottle of warmer water (remember, too warm and it will burn, without even being hot) to spray on your feet in T1. My attempt will be to load up my bike shoes with the warmers and open them up before the swim, and cover the shoes with a towel. When I slide my feet in, they will get nice and toasty (obviously I’ll empty the shoes before putting them on). This is probably your safest and cheapest way to do it, unless you plan on being away from the T area for well over an hour or so.