Raynaud's sufferers - any advice?

story1267

story1267

Cathlete
OK, I did a search, I promise, and didn't come up with much that had been previously posted. ;)

I've got Raynaud's and now we're beginning the slow, slide into bleeping wintertime and I will now not be warm again until late spring. :mad:

While cruising the internet I found some advice recommending the following supplements:

Magnesium (gluconate)

Evening primrose oil

No-flush niacin

I wondered if anyone has tried any of these and what they thought? Also, any other tips or tricks to share?

Gloves for some reason actually make it worse. I wish I had mittens that I could heat up in the microwave and they would stay warm for at least an hour and were easy to drive in (and flip through the radio stations while wearing!).

I already take a multi, and fish oil, and calcium, and my diet, while not perfect, is perfectly reasonable whole grains, lean proteins, a socially redeeming veg now and again......
 
story1267 said:
I've got Raynaud's and now we're beginning the slow, slide into bleeping wintertime and I will now not be warm again until late spring. :mad:
Click to expand...

Suzanne, I haven't been diagnosed but I'm pretty sure I have some form of it,and what you said above is exactly what I've been saying over the past few weeks! I think people think I'm a little crazy because I'm always cold.:mad:
Anyway, I'm interested in suggestions from others too. Thanks for posting about this!
 
Thanks Ginny, I'll check that out!

Phyllis, yes, winter-dread, definitely part of it. I guess the hallmark signs are the multi-colored fingers. When my hands get cold (and that can happen in warm temps just by handling cold stuff) they turn colors, blue and white, rather randomly.

Then, when they warm back up they hurt and are swollen and red. It's a drag.

Thankfully, I have an understanding and kind SO who will let me use him as a hand-warmer. Unfortunately, he isn't always handy - so to speak.:D

I hope more folks will chime in too.
 
IHATEITIHATEITIHATEIT!!! And that is exactly why winter now has a dread factor for me too. Mine fingers turn all white and ugly cheesy yellow - yuck! Though it is kinda' cool to actually watch as the blood starts to flow back in and the color returns. My doc told me to always have 2 pair of gloves handy and layer them - even in summer! It's my fingers primarily, not so much toes (though perhaps I've just not noticed) and I hate it when they turn numb and tingly from inadequate blood. Shaking my hands under warm running water helps somewhat. Good luck.
 
Suzanne, I have it too and have found that the only thing that really works for me is to use hand warmers (the little packs that you take out of their plastic package and shake -- and then they become warm for many, many hours). I buy a big box of them at Costco. They also have toe warmer ones as well. Those are my savior as my feet get equally as cold as my hands. There are ski gloves out there that have a pouch to place the hand warmers in. I just stick the packs in my gloves. It feels a little weird, but when I'm desperate for warmth, I don't care. The nice thing is that they stay warm for like 6 hours.

I totally know what it's like to suffer from this. Even in the summer my hands are cold. DH thinks I'm so odd! Good luck to you!
--Jennifer :)
 
I have this as well. The only thing that works for me is running my hands under warm/hot water. Gloves do not help at all. I even have my fingers go numb the minute I take something out of the freezer. It's ridiculous.\

Edited: You would think that with all the workouts we do our circulation should be excellent. The minute I stop working out my blood just stops. Weird and frustrating.
 
Last edited:
Hi I have this condition as well, it is a scary thing for me, it freaks me right out when
it happens.

I have been in air conditioned stores in the summer, walking around with totally numb
fingers rubbing my hands together like a freak trying to get the circulation back.
I try not to look at my fingers because the whiteness of them might send me in to a
panic attack. Out in the woods in winter I have to have really good boots, wool socks,
and thick mittens ( fingers can wiggle for friction) and still I have to be careful.

Finding a bath room and washing my hands under warm water has helped many times.
It sure is a pain, thanks for posting about this ladies. I will also try some of the helpful
suggestions posted here.

Take care,

Bri.
 
Thanks so much Lorrie, Jennifer, and Debbie, it's good to know that I'm not alone in my frustration!

Debbie ITA that we should have turbo circulation!

I can't do gloves either - I find that I'm colder with them. Sometimes mittens are ok but they are a challenge to drive in. I will definitely check into the hand warmers though, that's a possibility, plus I'll look into finding something maybe a little greener.

I wonder if I made some flannel pockets and filled them with rice, and then nuked them, how long they might stay warm.......

Sigh, I was hoping someone had tried and had success with the supplements....
 
I used to have trouble with my fingers but rarely do now. occasionally I will get a frozen finger but pretty rarely. I do wintersports and live in a relatively cold climate. I am not doing any supplements, but I am decaffeinated. Drink decaf coffee, decaf soda. I don't know if there's a "medically proven" connection but since I've quit caffeine there has been big improvement for me. I quit caffeine because of rosacea( a vascular skin issue) and this was a side benefit I didn't anticipate.
You can buy mittens with an opening across the top of the palm so that your fingers can come out of the mitten. they're sold mostly for outdoor activities where you need fingers for something briefly but don't want to take mitts off. I don't know a specific name for this style but try www.rei.com. Mitts are always warmer than gloves even for "normal" people.
 
It really is a drag. For me, it's both fingers and toes. When exercising I'll be sweating but still have no feeling in my toes. During a minor surgery I kept setting off the pulse ox monitor. They finally had to clip it on my ear, wrap towels around my head and blow warm air on me :confused:

I've tried magnesium but it didn't seem to help. Maybe I didn't take it long enough. Good thing I live in California because I don't think I could take freezing temps. It's like you get cold to the bone and it's so hard to get warm again.
 
OK, so here is weirdness for ya! i'm here at the computer with freezing fingers and toes, yet I'm having a hot flash! Why doesn't that affect my digit?!?! Geez, it's strange.:(
 
Hmmm. Traildoggie, you might have something there with the caffeine. However..... I don't think I could possibly give it up all together. I have dramatically cut back though.

These days I'm warm when: I poach myself in the shower, and I cook myself in the car. Otherwise somethings cold all the time.

Well, I think I'll guinea pig myself with a little magnesium - give it a month and report back.

I also take that CoQ10 so I'll keep taking it and add the magnesium.

Sorry about your simultaneous hot/cold Phyllis! :(
 
I don't have Raynaud's but my sister has it and she uses capsaicin (hot pepper) supplements and she thinks it helps. I'm sorry for all of you who have it--it sounds awful!
 
Jonahnah, I'm curious about those capsacin supplements. On the one hand, it makes sense to try. On the other hand I'd be concerned about, um, well, "the hot pepper effect" if you know what I mean......
 
If you reduce caffeine, reduce gradually. my husband had to stop caffeine too, so that made it easier. Caffeine was a migraine trigger for him.
we went from regular coffee to half decaf, then decreased more every few weeks. Most would people could go down faster than we did but he got bad migraines and we were being careful. completely decaffeinated for several years.
I hadn't thought about Raynauds til I saw this thread, and I realized that it's much much better than a few years ago. and how many things get better as you get older? not too many. I realize this isn't scientifically proven but it's a fairly easy thing to try. I did not have bad raynauds but it was annoying since we do lots of winter sports.

When I didn't have warm water available, I'd put my hands under opposite armpits or inside my pants between my thighs. Can't do that everywhere, but it works pretty well.
 
story1267 said:
Jonahnah, I'm curious about those capsacin supplements. On the one hand, it makes sense to try. On the other hand I'd be concerned about, um, well, "the hot pepper effect" if you know what I mean......
Click to expand...


My sister is a hot food (as in spicy) fiend so she had no problems with stomach upsets. You can check it out on some websites--it looks like it might come in different strengths and you'd definitely want to take it with food. (Is there another hot pepper effect that I'm not aware of??)
 
I also have Reynaud's and when I went to a specialist for this he said that you could take beta-blockers which I didn't want to do. Not only do I have it in my hands but also in my feet. He told me you can also get it on the tip of your nose. But that you should never run whatever effected bodypart under cold water because you can cause nerve damage.

I do try to keep gloves in the car and wear them anytime I'm outside in the cold or before I go into the cold and socks and boots. The first time I noticed it in my feet was when I was in the bathtub and they looked blue. I had my husband come look because I'd never seen blue feet. I thought I was a smurf:)....leigh:)
 
I have it in my hands, feet, nose, and ears. The ear part is really bad because I wear my hair very short. I have also tried taking a prescription drug for it (Norvasc, a calcium channel blocker) but didn't really find that it made a difference. I've just learned that I have to suck it up. Oh, and try to find somebody else to do the cooking when you have to handle cold/frozen foods!

Sharon
 
You must log in or register to reply here.

Our Newsletter

Get awesome content delivered straight to your inbox.

Top