r/Erythromelalgia

so i’ve had em for over 4 years, but it’s gotten WAY WORSE the last 2. i recently was researching and i found out that there was a case where em was treated through doing an e****ndoscopic lumbar sympathectomy (idk why this is being censored it won’t let me write it) surgery. i’m not that smart and idk much about it, but basically they cut somewhere in the body to remove a chain/the lumbar ganglia nerves (the patient only had em in his lower half but i think it’s something similar for upper body em).

anyways… the patient, through photos, didn’t seem to have nearly as bad of a case as me, who’s hands and feet both turn BRIGHT hot red at the sensation of any heat at all… literally from long walks, temp above 70° ish, hot showers, anything. but the patient ended up having a 95% reduction of symptoms after the 4 month mark, so maybe it would help with me?

i know this is reddit, but has anyone done this procedure or have any insight on it? does anyone know the risks of it? i’m probably going to contact the surgeon eventually and ask more specific stuff even though he’s in another country 💀 i’m desperate as hell

I have Lupus and Erythromelalgia, and I feel completely lost. I’m stuck in my room most of the time because almost anything I do triggers my symptoms. I can barely go to the store or walk anywhere without it flaring up — I can’t even walk for five minutes outside before it starts. I’m just exhausted and worn down by all of it. I’m going to be 18 in a year, and I have no idea how I’m supposed to make money or build a future like this. I’m graduating early, but I still feel like I don’t know what to do at all.

I just wanna know what i can do to stop this pls help

I Have Tried Gabapentin and Prednisone and those have not helped

Currently EM is Affecting my face, chest, hand and feet

I have 3 ultrasounds scheduled for erythromelalgia and possibly CVI, at $1,500 each before insurance and $500 each after insurance. Is it worth paying $1500 just to be told to continue doing what im already doing? (wearing compression socks, avoiding erythromelalgia triggers, cooling hands and feet when flaring up)

And, were your ultrasounds this pricey as well? I'm located in Chicago.