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@lacy2

Sorry to hear of your symptoms .. I have written mine here in a different section. No help. Had since June 2022 started burning cheek but no redness then both cheeks sometimes redness sometimes not, out of the blue, no reason. No sun, heat etc. Still have it. Waited 7 months to see dr who helps local dermatologist, he was so nice, but didnt think it was in his field. Then saw Neurologist had seen before, same thing, not his field.. doesnt know what it is. Sooo. Internet searches for me and I put together a binder with about 6 sectins on six things could be and by then mostly at night during night up to 5 hours - took selfies of face but no one seemed interested in seeing. So I have binder with sections now what? Only thing helped a bit was cool pads from fridge not freezer and trying to get back to sleep holding them against face.. sometimes down neck, tops of shoulders etc. Never had allergy testing. Nurse at clinic would not take any action... so now just try and keep bedroom cool and use fan every night but still occurs... like other things, just putting up with it. Drs./N.P.'s are not familiar with this problem unless its Rosascia which first dr. thought not. ... Along with other non-life threatening issues like F.I., P.N>, tinnitus/hyperacusis/inner ear pain etc etc it's a bit much to put up with but nearing 80 I hope not to wake up one day! But for those with this with lifetime ahead of them, WHY is there no knowledge/help just because there is not a simple blood test or such? Maybe check web site: Erythromelalgia.org may help.. best of luck to you. J.

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Replies to "Sorry to hear of your symptoms .. I have written mine here in a different section...."

I have Erythromelagia also. I posted my treatment with a special cream in a prior post . It does help me . Try to find a Rheumatologist that will examine and treat you . I see a Rheumatologist at Johns Hopkins in Baltimore MD . Where do you live ?

I was first diagnosed at 78. Have positive ANA but repeated tests find no related specific autoimmune conditions like lupus or RA.
Think EM is fully diagnosed with symptoms not tests.

Please keep posting especially when having good days.