I am new here, but not new to symptoms of EM. My first flare up occurred in 2009 when I was 25 years old. I didn’t have another flare up for quite some time, but don’t remember how long it was - we had no idea what I had experienced was, and neither did the dermatologist. I would have minor to moderate flare ups once or twice a year, often with 8 or more months of normalcy in between. It was easy to just tolerate the flare and procrastinate getting medical care.
I am now 34, and have had intermittent flare ups for the past several years. I had a biopsy of my foot earlier this year, and the results were inconclusive. My dermatologist thinks it is EM, but doesn’t have enough experience to comfortably diagnose it, and referred me to a rheumatologist. I am searching for a rheumatologist or neurologist in my area that has some knowledge of EM, but it’s looking like Jacksonville at the Mayo Clinic (4 hours away) will be my best bet. I have read so many of your stories and looked at the pictures - my symptoms and relief methods are almost identical. I’m 99% convinced that I have primary EM.
I am currently 25 weeks pregnant with our first child, and my EM has been flaring more severely than ever before. The worst flare lasted 2 solid weeks, and I was miserable. I won’t take any prescription pain medication while pregnant, so for now I just use elevation, a cold (just cold tap water) compress for about 10 minutes a day, tylenol, and keep the house cooler than usual. We have a neighborhood pool, and I’ve been getting in for about 20 minutes several days a week.
I am hoping that after I get formally diagnosed and start trying different treatments to see if I can get some relief. I’m also hoping to speak with my supervisor about letting me work from home during a flare. Just getting from my house to my desk at the office is excruciating.
I’m thankful to have found this group.