Hello, I’ve been recently diagnosed with EM And have a question for you all. Last year, I was diagnosed with pressure Urticaria. It manifests itself slightly different from my EM symptoms. If I carry a purse or grocery bags on my arm the pressure triggers redness and pain similar to EM but not quite the same. I’m just wondering if anyone else has experienced this and if they go hand-in-hand or if I am I have been misdiagnosed and it’s just a manifestation of the EM. Thanks in advance for responding to this topic.
I have a similar situation with my hands. When I try to open, say, a coke bottle or an obstinate jar, it sets off discomfort in my hands. What a weird disease. Patricia
I was originally misdiagnosed as cholinergic urticaria (esp. since I responded for a few days to antihistamines … but I think this is not uncommon for EM people.) I trialled high dose antihistamines (something like 2 zyrtec + 2 zantac + 2 allegra + gastrocrom) with no effect whatsoever at which point my derm dropped that direction. This regime would not be sustainable he explained, but the idea being sometimes a period without symptoms would be enough for your body to reset.
My hands will react with gripping things, and then it spreads along the arm. I am never itchy, but I swell + and get red + burn. I also react to the sun - but I think it is the heat of the sun. Even just a minute in the sun will cause patchy (flat) redness (even if I cover with coolibar stuff) and many derms say “that looks like hives” and want to refer me to an allergist / immunologist … who in my experience, just refer me back to dermatology Neither of these are as severe as the night flares (in terms of swelling, pain, redness), which are not triggered by anything external… but to be fair I avoid triggers during the day.
I think histamine (which might be released from mast cells upon pressure in sensitive people…) can trigger the sensory nerves (c fibers) to release inflammatory stuff and lead to vasodilation … so i think there is some overlap maybe but in EM case, the sensory nerves might be much more unstable (exaggerating pain + heat signals … histamine is just a very small part)? I later tested positive for small fiber neuropathy (via QSART, biopsy) and I think this is more the root of the problem at least for me
I hope you get some answers + relief.