Finally an explanation!

Hello all! I was diagnosed with lupus almost 10 years ago. One of my complaints to the doctors has always been about my HOT hands, feet and flushing on neck and face. No one has ever had an answer for me.
Someone mentioned EM in my lupus group and curious me I looked it up. :wink: I cannot wait for my next rheumy appt to show him this information!

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Good idea to take your phone with you and show the doc. I did that and that’s the first time anyone took any notice. My doc had never even heard of EM.

Listen to sheltielife, Red246! Your rheumatologist will have never heard of erythromelalgia. I went to nearly a dozen doctors and got mostly blank stares when asking about it. I had to fight with my HMO until eventually I got the director of physicians for Kaiser Mid-Atlantic to send out a mass message to all their doctors asking if anyone had experience with it. According to what I was told, they assembled a team of doctors just to find a doctor who could help me. The guy I was directly working with to find a doctor was himself a brain surgeon and he had never heard of it! I live in the fourth largest metropolitan area in the United States and it was hard to find a doctor who had even heard of it, much less seen more than a single case of it. Eventually we did find a physician who understood it and had seen up to six cases of it.