Hints of EM during pregnancy, nothing for 18 months, then BAM

Hello All!

I am 38 and first experienced strange episodes of my hands flushing during my first pregnancy, at age 34. It only ever lasted a few minutes, and I could feel the redness coming as a hot flushing feeling, exactly like your cheeks can burn when you are embarrassed. There was never an obvious trigger, and everyone assumed it was a weird hormonal thing. It happened in every pregnancy but stopped soon after giving birth. Deciding we were done having more kids, I forgot about it almost entirely until this August.

About a month ago, I went outside with my husband and kids, the youngest of whom is now 18 months, and moments after feeling the heat my hands suddenly flushed and felt like I was holding burning coals. I immediately ran inside and held them under the cold tap for a few minutes, which brought the burning to a bearable level. That instance was like a switch flipped, and now the flushing is triggered by heat, exertion, letting them hang at my sides too long, and stress. It’s every day, sometimes most of the day, and I’m increasingly feeling burning and itching my feet as well.

I pretty quickly identified EM as my likely diagnosis, and my PCP, though she had never heard of it, quickly agreed it seems to fit. I took photos and video to show her, which helped immensely, because she could see my flares look exactly like the images on the medical websites she pulled up during my appointment. My CBC came back normal. She’s ordering my B12 checked, but it was normal earlier this year, as were the slew of autoimmune markers she ran at that time. I have a pretty significant family history of AI disease, and at the end of 2019 I started having flares of hand and finger joint pain. They of course improved significantly by the time we did my bloodwork, and the rheumatologist I saw in the spring said it might be early RA but for now all I could do is take NSAIDSs when it’s bothering me. My PCP called him to ask about the possible EM, but he said he doesn’t think it’s AI-related because my ANA was negative earlier this year. He suggested I see a dermatologist for a biopsy to rule out vasculitis. I’m working on setting up that appointment, but I’m kind of doubtful of it.

So, here I am, with burning hands and feet, and now my finger joint paint that is flaring worse than it ever did before. I’m buckling in and getting ready for what might be a long bumpy ride.

I found others here who recommended a neurologist in my city (Dr Kincaid at IU Health). I just sent my PCP a message asking for a referral.

Thanks for letting me share.

Welcome to the community. I’m sorry you have to be here.

My doctors were initially fixated on auto-immune possibilities as well. However, like you, my bloodwork never showed any markers for immune involvement. My symptoms were eventually attributed to an unknown, random or spontaneous gene mutation after being virtually eliminated by a sodium channel blocker. (Some cases of EM are known to be caused by specific gene mutations. I was not tested for said mutations, as such testing is not yet routine. It is presumed I have them.)