Raynauld's disease-numb fingers/toes

[shootingstar]

physician believes that I have Raynauld's disease.

http://www.nlm.nih.gov/medlineplus/raynaudsdisease.html

It happens to me too often. And it's not freezin' yet. Seem to have this in past 2 yrs.

Anyone else???

[kelownagirl]

I have a friend who has it. Pretty tough to be outside for her. I don't have any personal knowledge or advice though. Can you use those handwarmers for skiing?

[Eden]

My grandmother had it and I wonder sometimes if I've inherited it. My fingers and toes hurt pretty bad out in the cold (they burn!) and my hands and fingers definitely turn white, I've never really checked out my toes...
Hand warmers do help - keeping my hr up when I'm out in the cold helps too. If I keep my core happy and warm usually I can keep my extremities happy too.

[shootingstar]

Got back from doctor's just now. She confirms for me (don't know about anyone else), that unless my Raynauld's symptoms are combined with other symptoms (rash, etc.), doctors feel no need to test.

STrange thing is that I only get it under certain conditions...when I'm walking outside...for even only 15 min. or so.

I've done snowshoeing for hrs. (ie. 4-5 hrs. straight) fand downhill skiing both in the mountains every Christmas holiday (4-5 consecutive days) and I don't get that cold in my extremities. And it is colder in the mountains.

I honestly thought it was stress pinching one of my nerves....

And on bike, yes, I do have to be more alert with my glove-wearing.

[spokewench]

Yep, I have it too! And, it does seem to be strange how it occurs. Sometimes, I get it when it really is not that cold, but sort of that difference between you are still warm and it is just starting to get cold. I will get it when I ride my bike downhill (which is sort of obvious, cold and wind-chill) and when I hike. When I hike it seems like it doesn't have to be that cold. Maybe it has something to do with the blood all going to the legs to keep them going or something? Anyway, it is manageable so far for me. I don't get it too often. But, I knew a lady who could hardly ride in the San Francisco Bay area in the winter cause it was so bad (and SF winters are not that bad). She would use those glove warmers all the time.

[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~

[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

[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...

[shootingstar]

Jeez, surgery to combat Reynauld's...not sure I'll go that far.

I work in a building where there is a problem of uneven temperatures in different offices. My boss who is 2.5 times bigger than I and has his office next to my dept., likes to lower the heat.

2 months ago, that resulted in me with a fever. My hands were ice cold. Temperature probably was hovering 10 degrees above freezing, but it was cold air current flowing into our dept.

I literally had to take a sick day off. Then later another employee and I covered up the ventilation unit with cardboard after I informed by boss.

I hope this never happens again...but we haven't gotten into deep winter yet..not that it gets really cold on the bottom of the mountains in Vancouver.

[SJCzar]

I also have it, but mine is secondary to another condition. The cold for me isn't the most painful part ... that comes when my feet start warming up and my toes really start to throb.

I have found that since I've been biking more, and generally staying more active, my feet have done much better. I guess that regular exercise helps the circulation to the extremities and makes for less occurrences, or at least less painful ones for me.

[Bruno28]

My dad has it - he takes a tablet every day and it keeps it completely under control. He plays golf every day even in freezing temps with no probs.

Hope you get a solution.

[yellow]

I have pretty mild reactions that kick in after I am out of the cold and back inside. That's when fingers 2, 3, and 4 go numb and white for about 0.5 hour. Then it goes away. I just can't try to eat when it happens. The doc called my level Reynaud's phenomenon or syndrome, not Reynaud's disease.

Happens whether or not I wear gloves, hat, etc. Also, it tends to happen at what I consider to be milder cold temps, between about 30-40. I can't think of a reaction after being out in teens and 20s temps. It's a very weird circulatory response. I started noticing it about a year after I had some pretty severe cold damage (not frostbite, but close) to my hands.

My reaction isn't that severe, so I just deal with it. It doesn't last, so it's more of a pain in the butt than anything.

[Jolt]

I seem to have this as well (doctor didn't actually tell me that I have it but I get the white/painful finger episodes sometimes and have basically diagnosed myself). The right hand seems to go first, especially fingers 3-5, and sometimes it stops there and other times the left hand gets it too. As far as being outside when it's cold, I'm fine as long as I keep moving and have warm enough gloves on. If I stop for too long that's when it kicks in (like on a hike when the group stops for a break) and then it can be hard to warm them up again for a while--a big reason why I don't like long stops on a hike when it is cold out! The funny thing is that I sometimes get episodes INSIDE (although we do keep the apartment at 60 degrees usually), especially right after eating--that's weird. However, I think I'd rather deal with that than have the surgery a previous poster was describing (yikes!!) or take meds for it.