Hi, I’m new to this site and my diagnosis was relatively recent, but EM has been my friend for a long time.
I have had EM since I was little, maybe age 6 or 7, and it started with what I used to call “hot ears.” My feet and legs started to turn red outside and in hot showers around age 10-12, and my mom and I brought it up to my doctor. I was told it was a heat allergy, which in hindsight was a pretty bad band-aid for what was really happening to me. My legs started to progress this summer, with pins and needles and burning pain after showers. After one particularly bad flare, my mom helped me look for my symptoms on google (because doctors had not been particularly helpful), and we found EM.
Even though I felt like a hypochondriac, researching my symptoms and finding a rare disease that exactly matched me, I couldn’t deny that it fit everything I was going through. The only outlier is that it isn’t contained to my hands and feet - actually, it climbs all the way up to my mid-thigh on my legs and takes over my ears and cheeks when I’m stressed.
The hardest part about all of this is trying to get diagnosed and be heard during Covid-19. Most of the doctors that I’m “seeing” are over video call, which isn’t helping this long process. I finally got a neurologist to say that I have EM, but she doesn’t really know anything about it, so I have hit another dead-end for now.