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Raynaud's & Erythromelalgia

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I have seen my Rheumatologist today and he says I also have Erythromelalgia along with the Raynaud's so I feel I can't win no matter what I do because I'm either freezing cold or my hands & feet are swollen & burning hot. So he is now trying me on a different medication to try to get the Raynaud's side eased because I'm developing blister like patches on my finger tips which is very painful when picking things up.

 

Does anyone else have both condtions & how do you deal with it?

 

Jensue

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Hello Jensue

 

I have both! How ridiculous is it that you can have a condition in which the blood vessels over constrict along side a condition where they over dialate? Of the two I have the EM worse so am not a traditionally cold sclero sufferer.

 

My raynauds, although worse this year than last, is not as bad as most people's it seems. My hands don't go blue, my feet do, and I don't get much pain. What I do get is constant cramp and according to the sclero nurse this is because of the raynauds and hey presto if I put gloves on it goes away. Of course I then have to yank the gloves off as my hand start to burn because the EM has taken over. It also effects my feet and legs, you can actually feel the heat coming off my legs.

 

The sclero nurse said that for EM vasodialators are used, the theory being if you keep the blood vessels open they can't suddenly over dialate and that using vasoconstrictors makes the condition worse. That I can agree with because if I use a vasoconstrictor for migraine I know my legs in particular will be burning away later on.

 

I take 75mg aspirin for the EM as I stopped the prednisilone 7.5mg. It did help but the potential side effects...I don't take anything for the raynauds though.

 

For the EM I have to sleep in the coldest bedroom, no heating on and it's freezing! Covers (more than one) go on/off through the night as I get to hot/cold. My hands have to be out ot the covers most nights as they start to burn otherwise and sometime the feet and legs. I don't know how else to manage the EM as I can't try vasodialators because of the headaches.

 

I suspect this won't help because I'm guessing your raynauds is much worse than mine so getting cold is a no go for you. Perhaps the vasodialators would help you with both conditions?

 

You have my sympathy, it's so difficult trying to treat one condition without setting the other off.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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International Scleroderma Network (ISN)

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