It’s the worst in my feet and legs. I saw all kinds of different doctors and specialists that didn’t know what it was. On a trip to the ER because the pain was so bad (no one would give me anything for pain) some random DR in the ER knew what it was immediately because his sister had it. Referred me to a rheumatologist with the diagnosis. The stuff they’ve tried doesn’t really do much. EM is odd because what helps one person won’t do anything for another. So unfortunately you’re likely in for some trial and error. The burning and swelling isn’t constant like it used to be. I’ve made a lot of life and environment adjustments to reduce flares. My EM resulted from idiopathic neuropathy.

I only have Erythromelagia on both feet. The cream Rhofade that I put on my feet three times /day helps but only short periods of time, 2-3 hrs. At least I can go go my 2.5 mile walk every morning. The cream was originally made for Rosacea, a facial condition of redness and swelling. The cream is very expensive, my Rx insurance covers it partially. Have you seen a dermatologist?
I also have Sjogrens. Dry eyes and mouth. GERD and Raynauds. It’s all tied in under Sjogrens. I see a Rheumatologist at Johns Hopkins. I’m in MD . USA.