Anyone Else Have "raynaud's Disease"?

Lounge By kellertur Updated 20 Jan 2009 , 6:47pm by mlynnb

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kellertur Posted 6 Jan 2009 , 11:53pm
post #1 of 13

I was just wondering if there are any other people with Raynaud's disease on CC. I've had this problem for years, I'm still in my 30's, but it became much worse after I lost 30 pounds about 2 yrs ago. (I can't seem to regulate my body temp anymore)
... it seems to be a family issue as I've just learned today my Grandmother also has this problem.

When it is hot, I have no problem with my feet, infact I wear sandals all the time outside. However, even in the summer, inside the house (wearing 2 pairs of socks and slippers) my feet start to frostbite. They turn white and hard and I immediately have to start warming them up any way I can. This happens when the house is warm...

I'm interested in hearing other people's stories. No one has taken me seriously until recently, and I wonder if this could have been prevented. I've frostbitten (first degree) my feet OVER and OVER for the past 20 yrs or so.... It would be nice to find a way to regulate my temperature.

Thanks for reading.

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Bijoudelanuit Posted 7 Jan 2009 , 12:18am
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My sister has Raynaud's as well, but I've never heard anything as far as being frostbitten- the winter must be so horrible for you! In summer my sister's toes will be purple when wearing sandals! This winter while shopping I saw warming slippers... I don't remember the store or the company that made them... I just remembered being so surprised to see such a thing.

Hopefully someone will see this and be able to help you!

Best wishes!

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Amia Posted 7 Jan 2009 , 12:31am
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I have Reynaud's but not to the degree that you do! icon_eek.gif I am never warm, unless it's that time (if you catch my drift). My feet are usually the coldest part of my body. They're always whitish and kinda numb. My friend has this disease worse than I do, but still not as bad as you. We always joked that she was a human barometer. If it's even slightly cold, her feet turn bluish purple - like Violet from Willy Wonka. If it's waaayyy too hot, her feet turn red (though she's still cold).

Have you talked to a doctor? I learned about this disease 8 years ago in high school, so I can't imagine why no one would've taken you seriously. icon_confused.gif I also can't believe you've gotten frostbite, ouch! There has got to be something that can be done for you.

Oh and I've seen those warming slippers too! I think I saw them at Bed Bath & Beyond or Wal-Mart.

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kellertur Posted 7 Jan 2009 , 1:19am
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I've never been hospitilized for frostbite (although I probably should have) but it usually happens IN THE HOUSE!!!! My feet turn white and hard and it's excrusciating to warm them back up... like they are burning. (In my teens (my vain years icon_rolleyes.gif ) I hardly dressed my feet properly... except when skiing. So I'm not sure if that set this off????)

I've noticed that STRESS will set off a Raynaud's reaction in me... like my blood vessels are just clamping shut. I've read that can happen. I know it's not AS serious as some people who lose limbs, etc. but I'd like to get this under control... it's not pleasant AT ALL!!!

I've mentioned this to my Dr. but my last apt. was in the Summer, so it wasn't as bad. I'm going to call tomorrow and just have her take a look. I've always passed it off as "just cold feet" or slow circulation. (which is weird because I move A LOT).

Thanks for your response. I've felt alone in this for a long time~

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Amia Posted 7 Jan 2009 , 1:23am
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Well Raynaud's essentially is poor circulation. Do you smoke, by any chance? Smoking can cause your blood vessels to constrict, which would hinder circulation even further. Maybe the dr. can put you on vasodilators or something?

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adonisthegreek1 Posted 7 Jan 2009 , 2:12am
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My daughter has Raynaud's. Her fingers and toes frequently turn colors and go numb. She's 17, and it's hard to get her to dress appropriately. The doctor has warned her that that is her best defense.

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kellertur Posted 7 Jan 2009 , 2:38am
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Originally Posted by amia1024

Do you smoke, by any chance?

I do not smoke. (I realize it's an addiction, and I hope no one is offended. I mean no disrespect). I grew up in a hovering cloud of second hand smoke, (have asthma because of it) so I've never smoked. Infact, I don't even allow myself to stay in close range of smoke. It bothers me that much. (Although I do wonder if repeaded exposire to second hand smoke as a child can effect circulation???)

I'd like to avoid medication if I can.... I'm sure there probably a simple solution I haven't thought of...

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Amia Posted 7 Jan 2009 , 2:45am
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Originally Posted by K2cakes

Although I do wonder if repeaded exposire to second hand smoke as a child can effect circulation???

Hmm...that's a good question. I was exposed as a child too. And I don't smoke, so I wasn't offended. As a matter of fact, I hate smoking just as much as you. I hate being around smokers! It is a disgusting habit!

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mlynnb Posted 8 Jan 2009 , 3:24pm
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My doctor told me when I was 18 that I had Raynaud's because whenever I am cold, my nailbeds turn bluish-purple. I never had any problem other than that until this last winter (I am now 35) I had an episode of my pinkie finger turning white, but that was after I was outside without gloves in 20 degree weather! icon_redface.gif I don't do that anymore! But, as I have gotten older, I have noticed that if I don't keep my feet really warm, my toes start to go numb. It's definitely not pleasant. I have heard too that it is due to poor circulation ( which I have) and low blood pressure (also have), but that being said, I am a very active person.....My 'real' profession is a fitness instructor/personal trainer! I guess the way I deal with it is to make sure my extremities are covered completely when I head out in the winter and I always have something on my feet, even in the house. Sound though, like your condition is worse than mine....I wish I could tell you more, unfortunately there's not much info on it out there!

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mlynnb Posted 8 Jan 2009 , 3:27pm
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Oh, by the way, I was never exposed to smoke as a child, nor do I smoke now, but maybe that does have an effect on the severity of an individual case, because mine is relatively mild......?

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kellertur Posted 8 Jan 2009 , 4:42pm
post #11 of 13

That's interesting... I also have relatively LOW blood pressure, and I am very active since losing the weight. Today I shoveled the driveway with my usual 2 pairs of socks and was actually warm. This condition is an enigma to me.... it seems to have no rhyme or reason.

icon_confused.gif This past summer we were taking swim classes with my young daughter at the YWCA. The pool is fairly warm (above 75) and my feet immediatly turned white and felt like two ice blocks. It wasn't until we were swimming across to the deep end that they started to thaw out. I found that quite odd... (by the way, having a toddler swim along side of you the length of a pool is ADORABLE... she gave me quite a workout!!)

Thanks for all your input everyone. I know it could be a lot worse than it is... but I am going to see what I can do now to possibly arrest the damage.

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GeminiRJ Posted 20 Jan 2009 , 6:34pm
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I've been aware of having Raynaud's for about a year now. I am sitting on one hand as I write this, trying to get some warmth back into my fingers. I often have my fingertips turn white, then dusky blue, then red. My toes do the same thing. It's a huge bother! I also suffer from migraines...perhaps another circulation problem? As far as second hand smoke being a contributor, hmmm. Not so much in the past 10 years or so, but pretty bad prior to that. I can't help with any hints on how to make it better, but you have my sympathies and understanding!

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mlynnb Posted 20 Jan 2009 , 6:47pm
post #13 of 13

I was thinking about this thread and the original OP this past week because it has been so unbearably cold where I live, I was wondering how how everyone else is doing with it? I have been very concious of keeping fingers and toes covered (2 pairs of socks at least), but I did have another episode of the pinkie finger turning white and starting to tingle like it was numb. And that was when I was indoors! icon_confused.gif Makes me want to stay in the rest of the winter!! Anyway, I hope all of you with this condition are staying warm! thumbs_up.gif

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