r/Erythromelalgia

Hot take (no pun intended). Everyone on this sub need to rule one or all of these in/out.

I got a really bad sunburn on both of my legs yesterday, below my knees to the tops of my ankles. My shins actually hurt to touch.

However, I can’t remember having a single flare up on my feet today. I typically have multiple flares at night after showering and when trying to sleep. But tonight my feet are not swollen, red, or uncomfortable (the rest of my legs are but that’s besides the point…)

Either I’m crazy and overthinking this, or maybe the sunburn is requiring more blood flow to my lower legs to heal. I wonder if it’s preventing my feet from swelling from too much blood flow.

Has anyone else experienced this? I have no medical knowledge so I kinda feel like I’m over analyzing this.

For context, I have been diagnosed with EM by a RA and I’ve had it for at least a decade.

every time i tried to blowdry my hair, regardless of if its hot or cold, my palms begin to burn so much that i nearly cry.

i decided to just cut my hair off and just begin to wear wigs instead LMFAO.

Does anyone here have the genetic/inherited form of EM?

My EM doctor (neurologist) thinks I may have an scn9a mutation causing my EM. We’re currently in the process of getting me genetic testing. We’re trying for Whole Genome Sequencing (WGS).

If anyone here has this type of EM and is up for talking about it, I’d really appreciate hearing from you about your experience.

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 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.

Hello :) I have joined seeking some advice. I am F32. The other night, at about 7pm I ate dinner (curry - wasn't particularly hot, but had some heat) and then at around 7:30pm, I had a warm shower. I noticed that my thumb on my right hand was burning. Then I noticed that my thumb, and the two fingers next to it plus half my palm on my left hand were burning. I got out of the shower and they continued to burn. It was stinging, and went on for about 1.5hrs. I noticed that my thumb on the right hand looked red but didn't particularly notice much redness on the left hand. I ran my hands under cool water which relieved the pain but it came back almost immediately once I removed them. Eventually, it sort of faded away and my hands were a bit tingly. Is this erythromelalgia? I am not diagnosed with anything other than asthma and eczma. I should note, the week prior, I had a lump in my left armpit which stuck around for about a week and then eventually went away. That has never happened before, and I wasn't sick nor had I had any vaccinations etc. Also, I had been clear of eczema for a good ten years but in the last 6 months it seems to have come back in areas that I typically never had it before. It now seems to be under my arms and armpits and down along on the sides of my breasts, on my nipples, and lower legs. It is so itchy to the point of having to scratch with a hairbrush most nights. I have also had a history with some heart palpitations, dizziness and tinging in my arms/feet/legs before (approx. 3 years ago) but tests showed nothing other than low iron (as always - which is odd as I have light periods) and some low b12 (took tablets and levels went up). I have been to the doctor today but I live in regional Australia and so all he said was to do a FBC and urine test and I will go back on Friday. No advice or mention of erythromelalgia. Thank you very much :)

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