Hello! Sorry for my poor english. I am from Russia and my symptoms started at 2019 with red hands and soles - sometimes these flares were asymmetrical - only to one hand or to one sole.
I have a long history of eating disorder - I also have a phobia of having diabetes. In past, I constantly checked my blood sugar, restricted carbs and followed high-protein diets + I am very anxious person. I think this is where all my EM issues started.
Now a have several triggers for my flares - stress, exercising (aerobic training), heat, some food as well - but I cannot tie my flares to any specific foods, I think that maybe protein and fatty food can trigger it… I don`t know. I can have flares in the moment of eating and then it stops, while sometimes flares start 1-2 hours after eating the same food!
I have already checked a lot of things - my brain, spinal cord and vertebrae, abdomen scan with contrast, 5-HIAA in urine, allergies, celiac disease, AI diseases, labs, liver function tests, A1C and so on and on - everything came back normal.
I have slightly elevated HDL levels and total cholesterol,and my C3, C4 proteins are always low, but doctors cannot find the reason why…
Occasionally I have low white blood cells count.
My flares got worse in the evening.
I have burning not only in extremities, sometimes in my chest, between scapulas and scalp as well.
Surprisingly, I don`t feel much of pain - only warm anf slight burning - but it is bearable. The main source of discomfort for me is swelling that comes with flares - when flare occurs it becomes difficult for me to write, tape a message on my phone and do things that require delicate movements with my fingers
I don`t have an official diagnosis. I met only one doctor here in Russia - rheumatologist, who have heard about EM … Other doctors have no idea about my condition and prescribe anti-anxiety medications only. I just want to figure out - is that truly EM or something else?