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help re: Raynaud's or Reynauld's or "white finger" syndrome


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Raynaud's or Reynauld's or "white finger" syndrome -

Hi - does anyone else on here have this? If do, have you seen a doctor and did that help? I've had this for a few years but it's gotten significantly worse the past 3 years or so. To the point where if it's only 60 degrees outside (which is not even that cold), simply from the few seconds walking from my house to my car, my fingers and toes will be white, numb, take forever to get their color back. Also it HURTS - tingling, pins and needles, kind of a mini-stabbing feeling.

I've been doing some research online but it doesn't seem there is much to treat this. Thinking of going to a doctor but not sure if that will be a waste of time.

Anyone else have experience with this? I only found out what it was called because a total stranger saw my fingers and told me what it was and to look it up. My friends regularly make fun of me. It's annoying and painful!!

http://www.mayoclinic.com/health/raynauds-dis ease/DS00433/DSECTION=2

 

(edit: fixed typos)

24 Replies (last)
My suggestion would be to see a doctor if you are experiencing worsening of symptoms and pain. Reynaud's syndrome or phenomenon can sometimes, although it is more rare, be associated with other vascular diseases. You want to make sure that these symptoms are not being caused by something else. Also, your doctor may just have suggestions on how to manage your discomfort.

I hope you are able to get some good advice that will make you feel better!
OK. Thanks, doc :-) I hope that I am able to get some good advice too.. and feel better. It's only annoying in the winter but it's definitely gotten worse (and it's only 71 degrees today in Dallas and it happened to me this morning!!).
going to be obnoxious and bump my thread again
My dad has this, I don't think his is really severe though his fingers do get very white.  Just reading through the link you provided from the Mayo Clinic, probably it's not a bad idea to see a doc so you can sort out if what you are experiencing is primary or secondary (i.e. caused by something else or not), and if there's anything they would want to do to treat.  Also, that site did recommend wearing gloves (and socks) and staying warm in general to help ward off an attack.

I was diagnosed at 14. My extremeties swell, though it's the same problem. They gave me blood pressure medicine, but it made me really tired, as I don't have high blood pressure, so I stopped taking it. Now I just am careful. It has gotten better over time for me. I used to not be able to put ice in a glass or hold a can of pop out of the fridge. It sucked. I still have problems handling cold foods from the refridgerator. But I just deal with it. My favorite season was always winter, and I live in Chicago, so it takes a lot of care. I am always bundled up and warm, and I have more gloves than an Eskimo centipede. Here are my suggestions: Invest in good gloves. Thinsulate makes great gloves that stay warm in the cold without being huge and bulky. Also, 180 has gloves with a valve on the back so you can breathe hot air into your glove.  Oh, and they say that human heat is best for bringing your hands back to temperature, so my boyfriend basically has gotten used to me sticking my cold hands between his thighs or under his arms. Hahaha, last night I woke up with my hands under his arms. I must have been cold, and he was on autopilot!

At any rate, go to the doctor and see what he/she can do for you. I found the best for me was to just prevent as opposed to treat, but who knows what works best for you?

Here are some good products:

http://www.ubergizmo.com/15/archives/2005/11/ usb_handwarmers.html

http://www.beallsflorida.com/default.jsp?page =product&styleid=119272&cm_mmc=CI-_-C SE-_-CSE-_-CSE&srccode=cii_9324560&cp ncode=07-38911439-2

http://www.raynauds.org/offers/toasty_feet.cf m

http://www.raynauds.org/index.cfm

Thank you!!!! I will go see a doctor about this soon. I feel silly wearing gloves in 60-degree weather... but I guess whatever it takes to keep warm!!

Hey, I've been diagnosed with Raynaud's as well. milder case where my hands and feet are always cold and my hands get all blue/grey in winter and my  nails refuse to grow!

The doctor told me its a circulatory disorder where the heart is not able to pump blood to the extremeties. He advised me the foll:

1) Never smoke. Its make it worse.

2) Wear mittens not not gloves as the fingers keep each other warm.

3) Dress warm

4) Excercise! Helps increase blood flow

5) Certain yoga postures can help but in all there is no real medication.

Hope this helps!

 

 

My daughter has a condition called RSD-reflex sympathetic dystrophy otherwise known as Chronic Regional Pain Syndrome.  It is different than Raynauds in many ways, but not in all.  It is characterized by cold/hot sensations (to the point where I need gloves to touch the part that is affected), burning sensation, pins and needles, etc.  It is a nerve disorder.  Her dr has said it is similar to Raynauds. 

Anyway, there are many ideas that can help the pain at RSDHope.org and at RSDSA.org and they might help you with the Raynauds. 

 For natural, alternative help Arnica gel and tablets, tumeric tablets, epsom salt soaks and botswelia tablets have helped her with the pain as does a comfrey leaf pack--all from your local coop or health food place.  She has had many medical interventions that have helped as well.

Hope this helps some.  Good luck.

 

 

Thank you so much for the replies. Katherine, I will check those websites. Yesterday it was 71 degrees and today in the mid 60s. A friend was shocked at lunchtime to see my fingers. I sat on my hands to keep her from talking about it more (and to try to warm them up).

Fat2fit - Most of those suggestions I do already. And I've never been a smoker (smoked like 5 times in my life and hated it).

Has anyone heard anything about birth control pills contributing to this? I've been on the pill for a while. I saw one website that said that could be a factor, and several other sites that seem to generally hint that could be part of it. And because of the pill/smoking/blood clots thing I am wondering if it could have a large effect on circulation.  Also I always have a very strong reaction to medications - like I will have the worst side effects ever on like 1/4 of a normal dose of something. So that makes me think that if it's related to the pill at all it could be very much exacerbated in my body in particular.

I'm waiting for a call back from a doctor's office to make an appointment.

I know about this one because initially that was my guess, when my fingers swelled up and turned purple, and I couldn't figure out why. 

My GP thinks mine is more likely psoriatic arthritis, and is sending me to a rheumatologist... I've been on the waiting list FOREVER... but the appt is *finally* coming up next week.

Can I ask you a few questions? Cuz I'm curious. When my fingers swell up, they do change colors, just like they describe (red, white, blue). But it lasts much longer than what you described. The last attack lasted for 4 days. For two of those days, the fingers were so swollen, I couldn't bend them at the joints (particuarly the tips). It did hurt, and there was numbness. The oddest part was the blue discoloration. Looked like a bruise, but the blue part moved around.... I think it was blood, moving just under the skin? I dunno.

However, cold - ice, specifically - *helped* instead of making it worse. So that makes me think it's not Raynaud's, but arthritis-related instead?

Also I get the swelling in my fingers, and sometimes also my toes, after a run sometimes. Do you get this? Even in hot weather - it doesn't seem to be related to temperature.

Do you have any nail changes? Any joint pain?

Hi Jen - No, I don't mind questions at all.  To me that does not sound like Raynaud's, what you're describing. My fingers and toes turn white -- ghostly white, not pale white -- within just a couple of seconds. It looks exactly like the photos above. And it hurts. It only happens in cold, and it doesn't even need to be very cold for it to happen. Cold makes it much worse. The longest I've had this last was about 20 minutes or so that I can remember. Any longer than minutes and I'm pretty sure it would cause tissue damage (permanent tissue damage) -- like frost bite.

I do get swelling sometimes esp. when I exercise. I think that is more related to sodium and circulation (not cold). I do have joint pain at times. I do not have nail changes that I can tell.

If you click on the links above it might help you to see. Raynaud's has been linked to arthritis. So I think they are similar. But what you're describing doesn't sound to me like Raynaud's.

I saw something about ongoing, vibration kind of work being a cause for Ranaud's. I'm wondering if my job could be the culprit -- typing all day long???

Yes, I've seen all the photos.. done my own surfing. It does look similar to what I've seen, but it seems the key differences is that yours lasted a short time, mine lasted for days, ice makes yours worse, and ice makes mine better.

Mine did come on very suddenly though, and it's true it was a cold night, and we were outside. I first noticed it when I was clapping... next thing I know, OUCH! I literally thought I'd broken my fingers (just by clapping??), the pain was that bad, then I realized it was because my fingers were swollen like sausages. I suspect they were already swollen... I just didn't notice until I clapped.

There's something called "sausage fingers" that happens with psoriatic arthritis... it's not pretty, and can be highly destructive and disfiguring if it goes untreated... so I was really hoping it could just be Raynaud's instead. :-(

But it hasn't really happened again... I do get swelling around the same finger joints, but nothing like that. And only a tiny bit of discoloration... every now and then. And my GP took xrays, and there is no damage so far, so that's good.

I don't know if this will help you or not, but I have started using my yoga massage balls on my forearms. It really helps, after a long day of typing. I find I have these tense little muscle knots all over my forearms. I put the ball on my bed, get on my knees, with forearm on the ball (these are small, tennis-size balls), and using my body weight, roll my forearm across the ball. I still have joint pain, but it does seem to help reduce the muscular pain part.  

I don't suffer Raynauds but am good friends with a woman who does.  You should get checked out and properly diagnosed quickly.  Raynauds is a progressive and degenerative disease, there are treatments to make you more comfortable with less suffering but these usually have side effects such as severe Ostierporosis (sp).

Please go and see a dr.

Also, it's important to go to the doctor. Mine ran all kinds of tests to rule out other problems. That's really important.

Thanks. I made a dr. appointment for this. I couldn't get in until January 2 but that's not too bad.

It was 84 degrees in Dallas today. And guess what? It happened to me when I went outside at lunch time. And I think it was actually warmer outside than it was in my office. So bizarre.

Hopefully the doc will have some ways to help. Thanks to everyone for your supportive posts and information!! I guess anytime it's 84 degrees or "colder" I will bring gloves with me. Maybe I can get a pair of those cool, thinsulate ones that are not too bulky for xmas or something.

I HAVE THIS TOO!

I'm so excited that I discovered this forum. I went to the dr's for this and she had no idea what was wrong. When I explained the symptoms (my hands turn completely white whenever I'm cold) she acted like this was so rare and said "I'm sure it's just bad circulation.." But this is so exicting that I'm not the only "freak" (as my roomies say) out there. Its the creepiest thing and I hate it. I'm dying to go skiing but I hate the fact that within 5 minutest I can no longer feel my hands or feet. So thanks for the info!

I just saw on the CBS Early Show a story on Raynauds Syndrome

http://www.cbsnews.com/sections/earlyshow/mai n500202.shtml

Hope this helps.

 

Amy_Blue, How did your appointment go? I haven't been to a doctor yet but I'm sure I have Raynaud's. I first noticed it a few years when I was driving and my middle fingers would turn white. I thought I was clutching the steering wheel too hard. Now it happens to any of my fingers (although my middle finger and those beside it most commonly) and it's just started in my toes. Like in some of the pictures, I often have a very clear line between the normal part and the white/pink/blue part. It IS creepy! And it's a pain in the butt!...I often have to pause to hold my hand under warm water when I'm making dinner and handling cold food. I'm pretty sure I don't have any of the more ominous causes but I will get checked out soon.

Good luck!

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