Erythromelalgia

[Loopy-loo]

Hi All,

Can any body advise on the above condition. Thanks, Maureen x

[panther50]

Hi I was diagnosed with this by my consultant. When I first found out I had lupus I experienced burning blotchy hands and feet (worse in sunshine) I never found anyone else who had it. At the time I felt like no one believed me! I'm afraid I can't shed much more light on it than that as I couldn't find much info. Other than it was part of the Raynaud's syndrome family- to do with circulation. I still get it now. I'd be interested to know more.

[Barnclown]

Yes: I have supimultaneous raynauds (RP) & (EM). Tricky to manage this cause the 2 conditions need totally opposite treatment eg vasodilators a disaster.

Have you been on the raynauds & scleroderma association website? They have good advice on both conditions. They also have a healthunlocked forum right here: check out the communities list. Vvvv helpful, like this forum

Also, the TEA is the best society for anyone with erythromelalgia: have you been to their website (burning feet.org I think): the erythromelalgia association. It's run by consultants & researchers: lots of good advice and info: you find out that you're not alone, although EM seems an unusual condition

It's no fun managing EM. Am wishing you all the best

Take care

[Loopy-loo in reply to Barnclown]

Hi Barnclown,

I have sent you a P.M. Thanks, Maureenx

[Barnclown]

Ps sorry: hope you guessed I 'd meant to say that the raynauds & scleroderma forum & website also have info about erythromelalgia and you'll find others with EM there for tips- probably more people who have EM than here on lupus forum...if you want to message me too, please do