Snowbird

Raynaud's

22 posts in this topic

I'd like to know this also. My feet will go bluish but not white and they're normally red because of the erythromelalgia. My fingers go white but never blue and again are usually red for the same reason as my feet. My Raynauds was diagnosed same time as the sclero.

 

When in my twenties I was always cold particularly my hands but now in my forties and despite Raynauds I am more often hot than cold despite living in a cold climate. Go figure!


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I mostly have fingers that turn sheet white and burn and then turn red when warming back up. My feet turn red straight away and my ears go burning red as soon as any cool air hits them.

 

Jill

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Hi Snowbird,

 

As I understand it, there are many different varieties of Raynaud's. The requirement for diagnosis is that finger(s) or toe(s) turn white or blue in response to stress or cold.

 

The waxy, dead white indicates a complete vasospasm, where no blood at all gets through. The blue indicates that there is some circulation, but not much. The red phase -- which, by the way, many of us do not ever experience -- is due to the blood suddenly rushing back in when the vasospasm ends.

 

All of my toes turn a very dark, dusky blue/purple at once. If they ever turn white, I haven't noticed it. My fingers however turn dead white -- either one finger or a combination of fingers, on either one hand or both hands. I haven't yet caught them all turning white at the same time, although the seemingly unaffected fingers are also very cold to the touch.

 

I haven't experienced the red phase. Best I can figure, some of us rewarm too slowly to enjoy that bonus color! But, red all by itself does not constitute Raynaud's; it must be combined with either white and/or blue to qualify. See our pages on Raynaud's which include many additional tidbits...Raynaud's of the nipples, anyone? Yeowch.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I'm like Amanda in that I also have erythromelalgia which makes my feet & hands go bright red & very swollen, they also feel as if they're burning. I just never seem to get the balance right. I think the Raynaud's is the worst for me and like you Shelley sometimes it's "either one finger or a combination of fingers, on either one hand or both hands". I have had times when both hands have gone fully white from the wrists down to my finger tips when I find that I can't do anything useful with my hands until they've recovered, they tend to be totally numb during this white stage, does anyone else experience this?

 

Jensue

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My fingers, knuckles and toes are blue/purple and cold to the touch 80% of the time. Even in hot weather.

 

Sometimes I get blotches of the blue/purple, like upper index fingers middle pinkies and index knuckles......very odd looking.


Diffuse Scleroderma Diagnosed March 2009

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Wow everybody....this has been an enlightening conversation topic for me....so many variations....and Shelley, ouch it would be!! I find it really interesting that even the hot weather causes this to happen...I would have never guessed that...always assumed it had to be cold/damp.

 

Mary, that was an interesting read to say the least...and I'de have to agree with you on freaky...but I'de still be curious enough to check it out at a science museum too now that you've mentioned it....

 

Thanks everyone!


Sending good wishes your way!

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Yesterday at lunch my husband noticed my fingers were blue. Of course his usual comment "How can your hands be cold in the middle of summer?" He checked and the temperature in the house was 75 degrees. I was wearing fleece so my body was quite warm but yet my hands were still cold to the touch as well as the Raynaud's purple finger tips.

 

So just for fun I got out our thermometer. We have the infrared type where you can get the temperature by just scanning the surface. We tested at my forehead and it was 97.5 degrees. We tested my fingers and they were 77 degrees! As we moved up my arm my temperature increased. So I guess it has to be really, really warm for those little blood vessels in the fingers to stay open enough to allow for adequate circulation.

 

We're all just a big science experiment!

 

Big Hugs to you all,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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