I take apririn and enbrel for the arthritis and a take lamotragine (a epilepsy drug for the erythyromalgia) plus anti inflammatory and codeine for pain relief. It’s not perfect but it’s torarable. I also take an anti malarial to give me energy. I know all these off label uses but if it works I don’t care.
I found lyrica and gabapentin both caused my feet to swell which made the em worse…other than the enbrel and the aspirin and the antimarial I try periodically to eliminate different things to give my body a break and to see if I still need it…dr apporoved of course cause they all say less better if I can manage. Leaving the lyrica and gabapentin behind were huge for me to the better but we are all different I just urge everyone to not give up something will help over time
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I laughed reading the title of your post. I don’t think EM is rare at all, I think that doctors have no idea how to recognize it. In my case most of the time, the redness is on my soles and toes and all the pictures show red up to the calf. I did see that once in the summer but mostly it’s on the bottoms of my feet.
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