Raynauld's disease-numb fingers/toes

[Tuckervill]

My youngest son, Will, was diagnosed when he was 3. It is exactly like described...that it's not that it's so cold outside, but the relative difference between his body and what he touches or the atmosphere. We figured it out one day on a cool morning in October. We went out the front door barefoot and walked through the grass to the back yard to get the last of the tomatoes. The air temperature was probably about 60 and rising, but the grass was wet with cold dew. By the time we got to the back of the quarter acre, his toes were bright white, and he was screaming in pain as if he'd been walking on glass.

Another time we were in Indianapolis in winter and it was 5 degrees out with snow on the ground. We stopped the car on the way to the airport so the kids could roll in the snow one last time. He was bundled up, and I had put some mittens on his hands. In the time it took for his brothers to run up the hill and back, he'd never left the side of the car, but was screaming in pain again because his fingers were burning. Pulled the mittens off--bright white fingers.

The doc said that it can be secondary to another condition, and if it's not, it's more an inconvenience than anything. If it is secondary to another condition, you've got more problems than Reynaud's.

Curiously, my son has never been one to wear shoes (you can be sensitive to heat, too, and I think he is). Couldn't keep his shoes on for more than an hour when he was little, he hates socks, goes everywhere in slides or barefoot. He seems to have very few episodes at all anymore, but I think he knows how to avoid it, or, he's outgrown it some. He hasn't had a serious episode in probably 5-6 years--it's been so long that he can't remember them. Some of the milder episodes had him coming to ask me if "this was it". (He's 14.)

A niece has it, too, and she feels like she gets a fast heartbeat when she has an episode.

I'm sure you'll learn how to compensate. I hope it becomes a non-issue for you.

Karen

[Crankin]

My son has it. It developed when he was a teen. He researched and had an experimental surgery where they cut a nerve to stop the problem and he was "cured." Seriously, usually this has to be done by cracking open your chest, major recovery. He flew to San Antonio with my husband, had the surgery, drove to Austin that night for dinner, got checked out by the doc the next morning and then flew home. They went in through his armpit and the temperature in his hands was like 20 degrees higher immediately after the surgery. Blue Cross paid for all of it, too.

[LBTC]

I think this is what our riding buddy has. Consequently, he loves to ride in the heat! One of the things he has done is gone to acupuncture, where she "reset his thermostat". He said it works for him for weeks at a time before he needs it reset again.

Hugs and butterflies,
~T~

[DebW]

I used to know someone who hiked in the winter who had this. I've also heard talks by Dr. Murray Hamlet, who does (or did) cold research for the army. Hamlet claimed that you could treat Raynauld's by standing outside in winter with minimal clothing and your hands in warm water for 10 minutes at a time. It was supposed to retrain your capillaries to open when your body was cold. Not sure if the cure was worse than the disease.

[Tuckervill]

My son has it. It developed when he was a teen. He researched and had an experimental surgery where they cut a nerve to stop the problem and he was "cured." Seriously, usually this has to be done by cracking open your chest, major recovery. He flew to San Antonio with my husband, had the surgery, drove to Austin that night for dinner, got checked out by the doc the next morning and then flew home. They went in through his armpit and the temperature in his hands was like 20 degrees higher immediately after the surgery. Blue Cross paid for all of it, too.

Holy cow, he must have had it pretty bad! For my son it's not near so debilitating to require surgery.

I'm glad your son found a solution!

Karen

[Crankin]

Well, it was affecting his cycling; at the time he was racing. Training below 55 degrees was painful and even if he went to brush the snow off of his car in the morning, he was in pain. It was getting worse and worse, and he is a real outdoors person, not just cycling. He has mostly lived in warm climates since he graduated high school, but I think he still has it in his feet. He could get another surgery for that, but i don't think the military would pay for it!

[7rider]

I've never been diagnosed by a doctor, but I wouldn't be surprised if I had it. My fingers frequently go white when it gets cold - like in that picture on the NIH site. Grocery stores are killer for me. I hate getting frozen foods - even in the summer!
If I have to wait for my DH to pick me up at the metro station in cool weather (not even cold), I end up cranking the heat and/or sitting on my hands for the ride home. If I wait for a bus in the cold weather, my hands are useless lumps of ice - even with ski gloves on. Sticking my hands in warm water is torture (throbbing, tingling, pain), but at least it gets the blood back to 'em.
When riding in cold weather....my hands turn to ice blocks, are incredibly painful, and then - poof! - I hit this threshold where they are fine.

[Eden]

(you can be sensitive to heat, too, and I think he is).

I get this part big time... the rest of my body likes a nice hot shower, but my fingers and toes feel like the flesh is going to drop off for a minute.... Fortunately it goes away after I get acclimated. That doesn't seem to happen when its very cold - they never acclimate, though the pain is a bit less intense with cold at least.

I doubt I could tolerate bp lowering meds... I've generally got a pretty low bp already too. I've seen my diastolic as low as 56...