Erythromelalgia

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.

Mellissa