21 Ways People Describe What It's Like to Live With Erythromelalgia

Erythromelalgia (EM), is a “rare condition often characterized by episodes of burning pain, warmth, swelling and redness in parts of the body, particularly the hands and feet.” It can be characterized as primary or secondary, depending on whether there’s an underlying cause, which can sometimes be genetic or due to autoimmune responses.

Because there is no diagnostic test for EM, many are diagnosed through symptoms, which can include burning pain in the extremities, pain that responds to cooling, and redness of the skin. As with most rare diseases, many doctors and medical staff are unaware of EM, making the chances of receiving a confirmed diagnosis more difficult.

EM Warriors is a non-profit patient support network that helps raise awareness about the condition, in hopes of increasing chances of diagnosis, and connecting people living with EM. They also provide beneficial resources on treatments, as well as up-to-date news on research.

The Mighty collaborated with EM Warriors to ask our erythromelalgia communities, “How would you describe your condition to others so they could better understand what you experience on a daily basis?” Their answers reflect the immense, oftentimes unbearable pain EM can cause, but also a perspective that can include hope and gratitude, despite the fire-like, painful sensations.

Here’s what they had to say:

1. “I would describe this condition as feeling like you are burning from the inside out. The pain from a flair can bring you to tears and all you can do is wait for it to pass.” — Rachel S.
2. “If EM is in a hand (or both) or foot (or both), it interferes with a lot — sometimes walking, and doing things with your hands (which is just about everything). Worst of all, it really, really hurts. It feels kind of like when you have a bad sunburn, or you’ve gotten a splinter (think of having many of them all at the same time), or a skinned place where you fell down and it won’t stop stinging. The pain is a ‘hot’ feeling. So many of us who have this problem just want to feel cool, and water and cool air are really important to us.” — Michael L.
3. “Fire and acid. It feels as though I’ve been doused with gasoline and a match was lit. Or someone is pouring acid over my head and it’s covering my scalp, ears, face, neck, back,feet, and hands. There is no escape. You are trapped in your burning body.” — Danette W.
4. “It’s like having coal for blood, and throughout the day it keeps getting lit, burning you from the inside out. Because of this, it means not making arrangements to go out because you don’t know how you’ll be one day to the next.” — Lorraine M.
5. “It feels like you’re literally on fire from head to toe. Sometimes pain is bearable and manageable, but in my case only by taking medication and herbal alternatives. It would be even worse if I had nerve pain 24 /7. This is like toothache, but magnified a hundred times. I sweat from my head to neck, and when it’s too hot, my face drips. I always have flannel, a fan, and water on standby.” — Britt L.
6. “I told my doctor that it was as if my feet in particular were bound tight with boiling hot bandages. And I am not given to exaggeration.” — HB
7. “It feels like I have a chemical burn or a sunburn, and put a hot hair dryer on it!” — Roni S.
8. “It’s like holding your limbs above a stovetop burner.” — Katherine M.
9. “I am on fire. Erythromelalgia makes grown men scream and cry.” — Paul S.
10. “The only way I can explain how hot the hands and feet become is to say I scalded my hand and arm with hot oil from a frying pan, but I never feel any extra heat or pain from the burn, since I was burning already from EM. My flares last hours or even more. I also suffer for few days after a big flare. My legs are in pain, and it’s too much to stand or walk. It feels like I am existing rather than living.” — Donna S.
11. “EM feels like I’m a coal walker, except I don’t actually walk. I just stand on them and then become engulfed in the flames.” — Laura J.
12. “It’s like standing in boiling lava.” — Sue W.
13. “Since I’m a big nerd, I’d say that if I had a superpower, it’d be creating fire with my body like the human torch! It really is a constant fire.” — Tabatha W.
14. “My hands and feet turn red and I feel like I’ve been sitting in the sun all day long. But the funny thing is I’m right in front of my AC and fan.” — Crystal P.
15. “Imagine your foot has fallen asleep… that tingly feeling that is so briefly painful for most is my constant companion. Now imagine several times a day, feeling as though your feet and hands are on fire along with the sensation that your skin may burst open from swelling. Some days the cycle repeats more times than I can count, other days are better, but the pain is never gone.” — Laurie A.
16. “It feels as though my feet are in vise-grips, as tight as could be, and hot as ever.” — Lauri W.
17. “It is like sitting too close to a fire, when your skin gets hot and you feel it start to pull… only I can’t get up and walk away. I have to deal with the constant burning pain.” — Jamie M.
18. “When people ask me what EM feels like, I tell them to imagine the worst sunburn you’ve ever had, where you can’t wear clothes and are bright red and hot to touch. That happens to me all over my body, all day, every day for no reason. I feel like I’m burning alive. The doctors don’t know why it happens and there is no cure for EM.” — Jesse B.
19. “It feels like EM has taken over our lives. We can only do as much as is humanly possible. I try to act ‘normal’ as much as possible, and live as much as I can. It isn’t the life I imagined or wanted, but it is the life I have.” — JM
20. “EM is a constant reminder that we are ‘zebras.’ We are unique. Our hands and limbs get bright red and feel like fire, a constant burn. The burn can last minutes, hours or days. It can be aggravated heat, stress and even caffeine. It’s a neuropathic condition and our blood vessels don’t dilate properly. We wouldn’t wish this on our worst enemy. It’s embarrassing to have others see your skin condition and look at you as if you are contagious. People want to know, but are scared to ask.” — Heidi H.
21. “It is the Doctor Jekyll and Mr. Hyde of our mental and physical well-being. But with great illness comes great gratitude. I’ve not been out much lately, so that walk to the corner shop was amazing — and whoever created breeze deserves a Nobel Prize. We tend to be extremely thankful for the smaller things in life.” — Tom C.

Do you have erythromelalgia? What’s one way you’d describe your condition to others? Let us know in the comments below.