Mine started out like that. Redness with no pain when I got out of a hot shower and then within two months the intense burning pain started and hasn’t stopped. It went from my toes to now hands, knees, ears, and nose.
Keeping taking pictures to keep track of everything.
Hope the pain never comes for you. It hurts A LOT!
May or may not be EM. Unfortunately the pic provided is not diagnostic. There are other possibilities too. If it is triggered by heat, physical activity and relieved by cooling and elevation it’s more likely to be, but I suggest don’t jump to conclusions. Have you seen your doctor?
I can’t imagine why you would want major, invasive surgery for symptoms that, by your own admission, aren’t that burdensome. If your doctor doesn’t take it serious, perhaps you should follow their lead?
No doctor is going to perform risky surgery on you given your current symptoms.
My pain doc told me it would be a last resort option.
Sympathetic blocks generally provide no relief for EM (but there are exceptions). Sometimes I don’t think the medical literature of rare diseases like EM – much of it in the form of case reports – is really representative. A positive report will gain a lot of traction, but for all we know it could be 200 unsuccessful attempts behind that 1 positive report.
The question though of whether someone can “pretreat” suspected EM (like if there’s a family member showing signs, etc) is an interesting one though I think. My thoughts:
I guess you could try to limit the heat with vasoactive meds. Maybe excessive heat will eventually modulate sodium channels? (big maybe … ) However, I have found that this is incredibly hard to do, without making symptoms worse. If I take propranolol / clonidine etc that constrict peripheral blood vessels, it feels so good in the moment, but then it makes me “too cold” over time, probably exacerbating my neuropathy / starving the nerves of blood. I try amlodipine / magnesium, and it feels so good in the moment, relieves all my electric shock sensations, while making me “too hot” over time. There’s a part of me that wonders if I did more harm than good experimenting with vasoactive drugs. Trying to find a good balance for me feels like trying to balance a pencil on its tip.
I guess you could try nerve pain drugs … to prevent future pain? (I’m saying this with a skeptical voice) These will have heavy side effects, to prevent something that may or may not happen. In addition, I wonder if it will just create a new normal so to speak before EM (and by EM, I mean pain) onset. Many are on pain meds like antiseizures at their EM onset for other conditions. I was on cymbalta / topamax at the time of my onset, and I feel like this messed things up even more, because doctors didn’t have a clean slate to work with. I couldn’t go on cymbalta to get more pain relief … because my body is already so used to it and expects it maybe, if that makes sense? I found no benefit from tricyclics, swapping cymbalta for effexor, as well.
I think the most productive, if not hte only productive, thing someone can do if they are worried about EM, is to make sure all other possible causes have been ruled out, and to generally optimize health.
I have probably spent way too much time contemplating if I could have prevented this burning crap from happening. I think this is a way of distracting myself from feeling the sadness + other harsh feelings that I just don’t want to feel – my gut says, this preoccupation on whether you have EM, or whether the pain will eventually come, etc is similar … a distraction for something. I do hope you figure things out, though, because it’s clear you’re feeling some type of distress… but I think it’s unrelated to EM.
My problem is not the pain, but the redness/heat. As soon as i walk into the beach, for example, my gets toes very, very red, with a bit swelly veins, and hotness. Not painful, but very, very annoying and uncomfortable.
I could seriously give 100k dollars to find something that makes this thing disaeppere.
Yet, it was the operation you were thinking about yesterday.
Look, this is ridiculous. Who do you think is going to perform this surgery, since no doctor has yet diagnosed you with erythromelalgia? Are you going to perform the surgery yourself?! No reputable doctor is going to perform a surgery, regardless of how much money you throw at them, if it violates standard of care.
These questions are beyond the scope of this community. I am locking this thread.