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Regular Member

Date Joined Apr 2007
Total Posts : 39
   Posted 6/14/2010 1:13 PM (GMT -6)   
Hi Everyone,
I was just wondering if anyone else has been diagnosed with Erythromelalgia? It affects my ears/face/hands/legs & feet. I was diagnosed two years ago and my docs aren't doing anything about it. It's a rare disease and most of my docs haven't even heard of it. My Rheumy is just hoping it gets better, she said to try asprin and  to be careful not to use ice that often. In the meantime I'm miserable. The summer heat has caused it to worsen, so much so that I can barely go outside and my legs have to be elevated near constantly. Even in my air condioned house I need ice pacs & elevation. I have read that there are treatments but I can't find a doctor who specializes in it. I was hoping someone here might have some insight. Thanks for listening. Hope everyone has a great day.
Dx:  Lupus, Hashimotos Thyroiditis, Peripheral & Autonomic Neuropathy, Fibromyalgia, Arthritis, Erythromelalgia, Interstitial Cystitis, GERD, B12 & D deficiency
Rx:  Plaquenil, Imuran, Levoxyl, Lyrica, Flexeril, Tramadol, Hydrocodone, Lasix, Lunesta, Ativan, Ranitidine, B12 injections , Vit D, Potassium

Forum Moderator

Date Joined May 2005
Total Posts : 6931
   Posted 6/14/2010 1:28 PM (GMT -6)   
I have never heard of this before, but I did a quick search and found a couple of interesting sites.

It looks like this may be secondary to SLE and is a vascular disease. I don't know what kind of Dr specializes in vascular disease, but it seems they usually try to treat by treating the primary illness. Assuming your current rheumatologist is at a loss, maybe try a second opinion rheumy or some sort of vascular guy?

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Forum Moderator

Date Joined Jun 2006
Total Posts : 1531
   Posted 6/14/2010 4:06 PM (GMT -6)   
Hi Mellissa. I have a BS in medical technology (Lab) and I've never heard of this either. Check the sites Lynnwood sent and you may want to find a hematologist. They specialize in blood disorders. Let us know how you're doing okay? Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease. Cellcept and lots of other meds.  Donna 

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