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???:confused: :(
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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???:confused: :(
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?
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.
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....:confused: :(
And on bike, yes, I do have to be more alert with my glove-wearing.
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.
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
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.
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~
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.
Holy cow, he must have had it pretty bad! For my son it's not near so debilitating to require surgery.Quote:
Originally Posted by Robyn Maislin
I'm glad your son found a solution!
Karen
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!
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! :mad:
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.
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.
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.
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.
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.
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.
It's a stereotype, but my Dr. says keeping your CORE warm (fleece vests and such) is key to keeping Reynaud's controlled. It seems to be working for me ... I never have problems during exercise, but have problems immediately after a workout (especially in cold weather, but not always), the blood flow to hands and feet just shuts down...even with a proper cooldown and everything. A hat & a fuzzy vest seem to work to minimize this ... which is good. Purple popsicle fingers are understandable in January ... but in June???? That's a little much.
It was disappointing tonight. I had my numb fingers episode...so much that I could not join my partner to cycle home ...who cycled to meet me half way enroute at my bike locker when I get off the train during part of the trek home. I just couldn't feel my bike brake levers, barely snap on my helmet straps, etc.
It bothers me when this happens. It's only about 10-15 degrees above freezing. Same temp. as last night but I was fine and rode home...first bike work commute in past few ...wks.!
So I jumped onto the commuter train with bike because I couldn't cycle safely with such numb fingers (it would have been a 20 kms. ride in the dark, different turns /detours not just 1 straight road homeward.)
:( This worries me. Feels like a mild unpredictable disability.
I know that this is an old thread, but I think some of the posters were confused when I described Scott's surgery. The usual surgery is major and involves cracking the rib cage. What he had was a laser or other micro instrument (this was 6 years ago) go in through a teeny incision in his armpit. They cut the vagus nerve, I believe. He was up the whole time and it took less than an hour. In fact, after the surgery, which was in San Antonio, Scott and my husband drove to Austin for dinner, wanting to see the place where Lance was from. Well, this was at the height of "Lance mania." The next morning he went to the doctor to get checked out and then they flew home.
I felt so bad that I sort of ignored him when he was complaining about his hands! I had never heard of Raynaud's, although now I have come to know several people who have it. He never took to the cold weather when we moved here from AZ and I really thought it was just his way of complaining a little more, even though it had been years! He researched the whole surgery thing on his own, on the web, contacted the insurance company, to see if they would pay, and then convinced my husband to use our frequent flyer points to fly to Texas for it. I give him credit, since he was only 17 at the time. It really was compromising the quality of his life.
I'm pretty sure I've got raynaud's, but after reading about drug treatments, I have decided I'll just live with it. Sometimes it makes winter riding complete torture, but I don't think I could tolerate drugs that could lower my blood pressure since I tend to be a little on the low side already. I'd end up like those fainting goats you read about on the internet...
Here's a tip that I learned a few weeks ago from one of the docs at my clinical: he advises his patients with Raynaud's to wear a turtleneck or a scarf and apparently that helps, something to do with where the nerves are that control vasoconstriction. I haven't really tested this out yet but it's worth a try. Also, magnesium is said to possibly help; I'm about to start taking this for an unrelated reason but it will be interesting to see if it cuts down on the vasospasm episodes (that would be a nice bonus) given that it is now the season where they tend to happen. I'll have to report back.
Let us know. I do think part of my problem is just feeling tense. I sat in a bus station last night for an hr. after walking in for only 10 min. My fingers were still numb for next 1/2 hr. And it's not even freezin' yet.Quote:
Originally Posted by Jolt
Yeah, I am on Inderal right now and I feel like a moron kind of foggy. Low BP makes me feel really funky, I am not liking it at all. I wonder if I am on my way to being a fainting goat? :pQuote:
Originally Posted by Andrea
On a side note, my meds say not to take if you have Raynauld's, before last week I wouldn't have known what that was.
I was initially diagnosed with this but it turned out to be thyroid disease (hypo). You might have your thyroid levels checked.
I have it too! I didn't know I had it until I was about 26. I moved to Co from Fl. I have found (through many self experiments - I'm a scientist, what can I say), that if I keep my core warm, I'm okay. I haven't had the horrible pain in the fingers/toes in a couple of years... I hear women are 30% more likely to have it than men...and it gets worse as one gets older.... that's my two cents...
That keeping the core warm, thing....I don't think that applies to my son. He developed the symptoms when he was three. Both of the worst times resulted in screaming fits and bright red fingers or toes.
The first time we walked around our yard, through the wet grass in early October to pick the last of the tomatoes. He had just come out the front door from inside the house, and had not been outside at all. His core had to be warm. It was probably about 55 degrees outside, cool but not cold, but the grass was chilly. By the time he got to the side of the house, literally 20 feet from the door, he was screaming about his toes. Serious screaming, with tears on his cheeks, like someone stuck him with a pin. (He wasn't a crier, so this was unusual.)
The second time we were in Indianapolis, and it was 5 degrees outside. We went from the hotel lobby to the heated van, to a park, where we stopped to let him experience deep snow. In the van, I bundled him up in a snow suit and boots, put on his mittens and a hat, and then set him outside on the curb while I put my jacket on. I did that and then shut the door of the van, and he started screaming and crying and holding his hands out to me. I pulled off his mittens and his fingers were bright red. Just seconds after I set him out there, he was in pain. Weird.
It's kind of scary, because you don't know what it is, and he couldn't really tell me what was happening--just that it involved his fingers and toes. Since then (he just turned 15), there have been only a few minor episodes, maybe one a year. He never wore shoes growing up (didn't like the feel of socks and he is homeschooled so it didn't matter), and getting him to wear a jacket even on the coldest day is like pulling teeth.
In his case, I just don't think it has anything to do with a warm core. We don't have enough data to really figure out what triggers it, though. His seems to have gotten better, not worse over time, too. Maybe it is different in women.
Karen
Just to give an idea how disabling this 'temporary' numbing can be...I was in a near panic a few days ago.
I was wearing a dress long coat...I was dressed for a job interview. I seldom wear this coat since I work in a rougher workplace.
And there I was struggling to unbutton my coat in the washroom cubicle half an hr. before the interview meet time.
It took me nearly 5 min. to unbutton my whole coat. I could barely feel my fingertips.
and it was about 8 degrees or so above freezing that day.
I'm pretty sure I have it too, although never confirmed by a doctor.
My dogs get impatient when I can't get their leashes off after a wintertime walk because my fingers are too numb/painful. And that's in California, with gloves on. :o
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.Quote:
Originally Posted by Tuckervill
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...