Hello. I’m Tony. I live in Kansas City. I’m in my early 60s and I’ve had this condition for 15 years but only recently found out it was called Erythromelalgia. As I’m sure you know, it’s rare so most people and doctors have never heard of it. Until recently, I thought I was the only person in the world with this condition. After researching EM, I realize that my case, even though a huge problem for me, is minor compared to many other people I saw or read about online. For some people it looks much worse than what I’m experiencing and my heart really goes out to those folks. My symptoms are the burning feet and associated problems. A near daily occurrence. Worse in the evening and worse in the heat. I try not to wear shoes and never wear socks. Being on my feet aggravates the problem. My GP has prescribed Cymbalta + Lyrica. It almost immediately started working. I’ve only been on it about a month now, but I’ve already achieved a level of comfort I’ve not had in years. I’ve also found aspirin helps for relief sometimes but takes a long time to take effect - an hour or more. I’ve also occasionally taken a muscle relaxer off label at bedtime to relieve pain if it’s intolerable - it does help. I’m very happy to have found this online community and am glad to answer questions as best I can.
I use 3 little fans arrayed around the end of my bed. I only use them when my Pregabilin and Amitriptilene are not working.