Has anyone got EM following an acute rash? Involving burning face?

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1

Two years ago I had a burning hot face on a cold windy day. By evening I had a dramatic red rash on my arms, legs and chest and a raised area on my forehead( which has never gone). My face stayed red and burning hot and there was warmth in my hands and my shins which also tingled( but they were only like that in bed).
I was prescribed antihistamines for supposed urticaria which were changed, doubled etc but had no effect. I then got angiodema in my hands and was given steroids. The steroids got rid of the angiodema and most of the rash but not the burning face or swelling on forehead. The biggest problem was having a burning red face with even a small amount of heat. Last summer my hands got more of an issue and I also started to wake up at night with hot hands and face. My fingers started to feel hypersensitive and tender. They are now so sore I do not want to use my hands and my palms are becoming sore too.

I did try some of the usual in the beginning, gabapentin, propranolol, venlofaxine(made me feel sick). None helped. I am now looking to find a consultant to see, maybe Chris Denton or Michael Lunn and am going to try acupuncture.
Don’t doctors try to find the cause if it is secondary? Although I think I must have EM, my hands don’t seem to get as red as I see in photos.

2

EM doesn’t present with a rash, but there are many other conditions that do. I would still consider other alternatives.

3

I am wondering if whatever the rash and burning face etc was, could have triggered erythromelalgia symptoms. The rash went. The burning face, hot hands didn’t . They have become worse over time.

4

I have seen an immunoligist, endocrinologist and dermatologists who couldn’t come up with any diagnosis. A rheumatologist diagnosed EM before Christmas. I found it difficult to find anything with burning face mostly triggered by heat and hot hands which are getting more and more sore since the hands got hotter. I also have shins that feel hot and tingly if under bedclothes as if an electric blanket is on. I have spent a lot of time researching. It is difficult to know what type of specialist to see and my GP has not been at all helpful.