Raynauld's disease-numb fingers/toes

[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.

[shootingstar]

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.

[Crankin]

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.

[Andrea]

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...

[Jolt]

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.

[shootingstar]

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.

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.

[Aggie_Ama]

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...

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?

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.

[shootingstar]

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.

[msincredible]

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.

[flash]

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.

[makbike]

I was initially diagnosed with this but it turned out to be thyroid disease (hypo). You might have your thyroid levels checked.

[ginny]

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...

[Tuckervill]

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