Hello, my name is KJ.
I haven’t been officially diagnosed with EM, but I have been diagnosed with Raynauds. I’m unsure whether my burning symptoms are actually from EM or another autonomic condition, but I’m constantly dealing with flare ups whenever I shower, am exposed to heat, or experience stress. My hands and feet (and my face mildly) get incredibly red (to the point of purple in the shower), and feel like they’re on fire. My symptoms seem also to be correlated with an essential medication that I cannot stop taking, since they got worse when I tried increasing my dose. My flare ups worsen with alcohol and some foods, such as garlic which also causes my stomach to get upset.
Elevating my feet tends to help, as do compression socks (combined with elevation). Cold soaks only help while my feet are in the water, as soon as I take them out the burning comes back worse.
I don’t have any photos of my burning hands and feet since I make a point of hiding them in public and am extremely embarrassed by how shockingly red they are.
I’ve included a picture with a mild face flare up, it’s incredibly contained in my nose and cheeks but it always burns like fire. I usually wear makeup to cover it so it is much more red than it looks here.
