Reynaud's Syndrome? - YouLookFab Forum

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Reynaud's Syndrome?

Janet

(website)

Veteran

Do any of you have this? My fingertips will sometimes get numb and white, and it's not even necessarily when I'm coldest! I went for a run a couple of hours ago, took a shower and ate some lunch, and realized that here I am, in the house, with cold fingertips.

I should probably bring this up at my next medical checkup. I never think of it when I'm at the doctor, even though I've had this happen since I was in my 20s at least, maybe longer.

If you have this, how do you cope? Any treatments been successful?

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14 replies

Latest reply was from MNsara

catgirl

Veteran

I have it. If I'm doing anything cold with my hands, I'm miserable. When I'm making meatballs I run the tap on hot and keep reheating my fingers. Outside when I'm skiing or walking the dog, I use those little handwarmers that you get at sport stores in my mittens. It gets worse as you get older, per my mom. I wear glove liners in my mittens too and keep squeezing my hands into a fist to keep circulation going.

Janet

(website)

Veteran

I get those hand warmers too! And then forget to put them in my camera bag or pocket when I go out. Der.

Sometimes it just doesn't seem to make sense when it comes on -- although *after* a winter run I get chilled because I heat up quickly and break a sweat after 20 minutes of running, even when the temps are in the 30s. The sweat cools and then I get chilled, even though I was warm while running.

Oddly enough, I didn't have much trouble with this in the Arctic. But here it is 55 degrees outside and I have it in the house. Too weird.

The other day I went out with a group to photograph an abandoned hospital, and I started out quite cold -- I had to windmill my arms to warm up my fingers. But once I got into photographing, it went away. Maybe just the movement of my fingers and hands with my camera was enough to ward it off.

Louise

Veteran

I used to suffer with it when I was thinner oh my it's painful I sympathise. Dr wasn't worried just told me to wear more layers! I used to wear wrist warmers too. Since putting a few pounds on I've not suffered with it again x

Mander

(website)

Veteran

My toes do this sometimes, but I'm not sure if it is an actual problem or just the fact that my house is kinda chilly. It's usually only the second toe on both feet, though, which I suppose is kind of odd.

Claudia

Veteran

Yes, developed it last year after getting near frostbite (from removing wet snow from landscaping hedges, that soaked through my gloves, I was outside working like this for hours). It's terrible. If I get something out of the freezer or stuff from the refrigerated cases at the grocery store it happens. Even outside in mild weather and in the house where the temp. is set at 70 degrees. I HATE it! It has effected two finger tips on my right hand. Awful feeling when the blood flow goes away.

If I am home, I run my finger tips under warm water until the blood flow returns. If I'm some place were I can't get them under warm water or warmed up, it makes me feel a bit frantic.

biscuitsmom

Veteran

I dont have Reynauds, but have widespread fibro and arthritis in my fingers, and they sting/hurt/ache so badly as soon as they get cold (which is basically anytime Im outdoors from Nov-March) so I really sympathize w/you. I dont know if they have hand-warmer packets in your area, but they really help. Otherwise, try running warm-to hot water over both hands every 20 minutes or so.....and gently pat-dry....you might want to talk to your Dr about Tramadol- it has made me a lot more mobile

Anonymous

Have you been diagnosed with it? I know about it from when I was tested for an autoimmune disease, but It was seen more as a symptom of other illnesses. I bet it is nothing but I would say bring it up at the next appointment.

cheryle (Dianthus)

(website)

Veteran

Zap is right. It is an autoimmune issue but there isn't much other than the cold extremities. My doctor said in passing that I have it. I have an aunt that has lupus and understood it was kind of a weak little cousin to lupus.

I have a heating pad under my sheets with a control switch near my head for when my feet are so cold they keep me awake at night. I find it mostly just an annoyance.

Claudia

Veteran

Janet, definitely talk to your MD about it, but don't freak out. There are different types of Raynaud's. The most common kind (primary Raynaud's) is not associated with autoimmune diseases or other illnesses.

Suz

(website)

Veteran

I have it. Like yours, Janet, there sometimes seems little rhyme or reason for the timing. It is rare for it to come on when it is hot outdoors, but even that has happened. My hands do get cold quickly outdoors, (I mean in the regular way of being cold). But I won't always have an attack of Raynaud's in the cold. Just sometimes. And sometimes I'll get it indoors when I'm not feeling cold at all.

I used to get it the worst when I was commuting to my teaching job (by car) in winter -- that i could understand -- the car was cold, and my arms were held at an angle that may have impeded circulation. But I'll get it at the oddest times.

My daughter's friend's mother has it much much worse than me. She has to go through all kinds of contortions dealing with it.

I was told not to worry about it -- in my case it is not associated with anything else.

DonnaF

Veteran

I have secondary Reynaud's -- the kind that is associated with another autoimmune disease, in my case scleroderma. I have normal blood pressure, but take a low dose of a calcium channel blocker medication (amlodipine) to lower it further to increase circulation to my fingers and toes. In addition to temps below 65F or so, stress also brings it out. I rarely see white hands/feet; mine turn a gruesome purplish black. Reynaud's means you are much more susceptible to frostbite and having to get a sympathectomy, meaning having your fingertips amputated. I almost always have fingerless gloves in my bag and always keep gloves in my glove compartment. I have learned to wear sandals only rarely, because inevitably, I look down and see those gruesome purple black toes, and it's not my nail polish.

I live in the SF Bay Area, so don't have to deal with real cold. I am very, very careful to bundle up always on both hands and feet, and I check them often because I am not always aware that I am having an attack. There is NO WAY that I want to have my fingertips or toes amputated!

deb

Veteran

Here is a good espliantion of the two types.

http://en.wikipedia.org/wiki/R.....phenomenon

I have secondary from Thoracic outlet syndrome and My fingers turn purple.

Janet

(website)

Veteran

Wow, thanks for the info and commiseration, everybody! I'm sorry to hear that some of you have such big trouble with this. Mine is very mild in comparison. I rarely gave it much thought until recently.

I have a feeling this is not related to anything else, since I have had this for a long time but no other symptoms of other conditions. I suspect that I'm noticing this more as I approach that lovely change of life time. I am fortunate! It's more an annoyance than anything, but I am going to start keeping those hand warmers in my car and taking them on my cold-day photo jaunts. I actually prefer cold weather to hot, so I really don't want this to get in the way of my enjoying winter outings. Some days when I get back to my car, I turn on the seat warmer (what a brilliant invention!) and put my fingers under my legs to warm them up quickly. LOL

Interesting that I get this after my cold-weather runs. I often come home and take a hot bath afterward to get rid of the chill. I think I will start taking along a second pair of gloves or mittens to wear after a run. After a mile or two, I'm almost always taking my gloves off, and they're sweaty so I don't want to put them back on again later. Having a dry pair to wear as I cool down and drive home may be a smart move.

MNsara

Veteran

I had it diagnosed 20+ years ago. My understanding is if it's a stand-alone problem, it's called Reynaud's disease. If you also suffer from Lupus or other auto-immun disorders and have it, it's called Reynaud's syndrome.

I don't know which things make me sturdier or more vulnerable, but it does vary in how I react.

I don't hold frozen foods with my fingers, I hold them against my torso with my forearms (and even then hurry to put them down or in a grocery cart!). I always have multiple pair of gloves in my car. I always skiied with hard warmers in use or available, or both.

I don't mind the discoloration much, but the instant pain of blood vessels shutting down makes me run for the faucet and warm water. (i know, I know, that's never recommended, but I'm careful and it works fast

Overall, it's pretty manageable, but you won't catch me dog sledding, or any extreme winter anything anymore. . .

Hope yours is easily managed too!