Anyone else like this?: When I have my... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Anyone else like this?

Goldyukr profile image
8 Replies

When I have my feet lowered for more than 10 minutes, my feet turn blue with blotchy red. When I raise them, they go back to normal within a few seconds. I recently did the test where they put your feet in ice and measure the blood flow compared to before. It was normal. However, by the time they raised my feet and reattached the bands, my feet looked normal again. Does anyone else have this? Is it Raynaud's if you do?

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Goldyukr profile image
Goldyukr
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8 Replies

Yes I have this too. Don't know why though. Livedo Reticularis?

Winfield1 profile image
Winfield1

my daughter has EDS - she has over stretchy collagen. When she stands the blood in her hands and feet pool (they go purple). She is only 19 and has to wear compression tights everyday to help her circulation.

I have this too, my rheumy thought it was unusual ( wasn't very reassuring) and nothing to do with raynauds.)

Goldyukr profile image
Goldyukr in reply to Winfield1

Interesting. Thank you. I will look into that! I have terrible pain in my legs from this and have to have them elevated pretty much all day. Very limiting as to what I can do.

in reply to Goldyukr

It maybe worth getting tested for Hughes Syndrome/APS and having PAD ruled out. My neurologist wants me to wear compression tights now too

Goldyukr profile image
Goldyukr in reply to

I will put it on my list of questions for my next visit! Hoping I can find some relief. Thank you

charlieab profile image
charlieab

Hi

Did you find out what was causing this problem? My legs do pretty much the same thing and I have to keep raising them to get rid of the purple.

thanks

Goldyukr profile image
Goldyukr in reply to charlieab

All I've been told so far is that I have some sort of vessel wall instability. No one seems to know for sure what is causing it or how to help the pain so that I can function better. What have you been told?

charlieab profile image
charlieab in reply to Goldyukr

Im sorry to hear that it is still causing you problems. My GP told me that it was just part of the raynaud's but that doesnt seem to make any sense. I should be getting the results of blood tests this week and so might have a better idea of what is going on. Will let you know if I get an answer about the levido.

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