r/Erythromelalgia

I apologize in advance for a lot of detail, and being a bit all over the place.

I have all the symptoms EXCEPT burning. I would describe it as heat, many people have asked if I’m sunburned or think I’m sick when they feel how hot I am. It’s extremely uncomfortable to the extent that at times I have a hard time sleeping, and I feel miserable and it keeps me from doing some things.

The classic triggers are there. The common body parts are the ones affected (face, ears, hands, feet), and they’re bilateral.

I’ve been experiencing this since I was a child. My grandmother had “circulatory” issues I’m told, but I’m not sure what ever happened with that. My aunt too (my grandmother’s daughter). My sister has the same erythromelalgia type symptoms as well, but also diagnosed Sjrogen’s + PCOS. My other sibling has more minor heat issues, but they’re present. She has been diagnosed with celiac disease. I’ve had hypothyroidism since I was a late teen.

I have also suffered with raynaud’s type symptoms as well (my sister too, the one with more severe symptoms like me). It’s like my body is either too hot or too cold, and if it crosses a threshold of either, it takes a lot to get it to neutral. The tinniest things send me into a too hot or too cold phase.

When I found this subreddit, all the photos felt like “coming home”, like YES, these are my people, they get it, these hands look like mine. How I hate wearing anything but sandals, but even sandals are miserable.

However, I just have that one missing component of it not being a “burning” pain.

I have OCD, so maybe I’ve over thinking the technicality of this.

Would love to hear your thoughts. What other conditions would you look into?

Edited to add: I take thyroid replacement, it’s not untreated.

Hi everyone! I saw Dr. Davis at Mayo Clinic a few years back for erythromelalgia and their testing revealed hyperPOTS. Which honestly made sense, but was unexpected.

I tried the typical compound cream treatment and lidocaine, but only ice packs and fans really helped the burning go away.

Fast forward to these last few months and the autonomic neuro agreed that I could try a few meds and see what helps for my hyperPOTS symptoms, mainly the severe total body hyperhidrosis. The med that worked for me was clonidine!

I take 0.1 transdermal patch replaced weekly. This has been truly life changing for me and I no longer have severe hyperhidrosis, erythromelalgia, freezing and swollen extremities and honestly more that is too much to mention.

The point of my post is really don’t give up and be open to trying recommendations! It took 16 years from my first symptoms (funny enough also noted at Mayo as it was my local clinic growing up) until I found this treatment.

Keep hope and keep on keeping on! 🫶

I’ve been writing in a diary because I forget the pain, lose my sense of myself, and lose the overall feeling of what I’m going through. I like expressing how I feel, but I can’t always do that out loud, so I’ve been using a notebook. It doesn’t really help, but maybe someone would find it if something ever happened to me or if my conditions got worse.

There aren’t any therapy places available, and I’m just unsure who I am anymore. I feel myself changing becoming more selfish, more unaware, more mentally unstable. I need friends, but I’ve never been able to make any. I never fit in, never had the energy. I feel like a sack of potatoes… no, worse, because potatoes are useful. I feel useless, tired, sick.

Maybe my mind just can’t handle the complications of having both Erythromelalgia and lupus. I don’t know if I’ll ever be able to support myself or survive on my own. I wake up, play games, sleep over and over because EM has taken my dreams from me.

I want friends who don’t pity me, who understand me, who actually take time for me even when I can’t always give the same back. I feel selfish because if I’m not, I get sad. I ask and never give because I feel like I have nothing to give just emptiness and fake empathy. I feel broken and tired.

I wonder if I’ll ever feel understood, or if I’m truly selfish or broken or both. Maybe I’ll become something more someday… but most likely I won’t. I’m 17 and already feel like my life is over, even when I push past the pain and the urge to do nothing so my EM doesn’t trigger.

I graduated, but I’ve realized I might not be able to use it because of all this. I’m so tired, so sleepy, so done. I just want someone or something to make it stop, even though I know people love me I just can’t feel it the same anymore. I bury my feelings because I don’t know how to use them.

hey guys i was cutting up habanero peppers and then realized they were WAY too hot for me to eat (im not really knowledgeable with that stuff) so i cut them up with my bare hands AND scooped them out of the pan with my bare hand and they touched all over my palms. i don’t think i washed my hands right after and i only washed my hands once last night but today my palms are burning SO BAD and they’re getting worse i think. ive showered and washed my hands several times and nothing helps. is it from the peppers? the only reason i think it might not be is because i’m on a new medicine and maybe it’s a strange side effect idk? but also no matter what i do they won’t stop burning.

Lately, my heat flares and pain have mostly been on my right leg and foot. Not much on my left side. Does this happen to anyone? It's been about 2 or 3 weeks now. I didn't pay much attention in the beginning so not sure about the time frame.

I hide my pain a lot, especially when it’s not “bad enough” to complain about. I’m going out with my grandma today, and I’ve been dealing with EM, but I’m trying to get out of the house so I don’t go insane. It sucks that people think this is my normal, because it’s not. I try not to move much since it causes sharp pain and a ton of discomfort, and lupus makes everything worse.

I just don’t know how to explain to my family that this isn’t my normal, even though it feels like they think it is. It also feels like they think I only go out when it’s about me which is kind of true, but only because if I don’t get out sometimes, I start to mentally break down from being alone for so long doing nothing except gaming.

Been really confused lately. I can’t tell if things are changing because the weather’s getting colder, because my meds are doing something, or because I’ve been breathing really slowly and paying closer attention to when I’m about to trigger. I’ve actually been able to stand for much longer before anything starts. For me, the warning signs are when my skin gets hotter and red, and then those waves of pain start building.

It’s confusing because I don’t know if I’m adapting to my condition or if the meds are helping. Honestly, I don’t think they are but I’m still hoping. I also don’t know if this improvement is just because I’ve been monitoring myself more carefully and controlling my breathing. I breathe so slowly sometimes that I get lightheaded if I push it too far.

Maybe this is progress. Maybe I really can live my life a bit more. Or maybe it’s nothing. And of course, while typing all this, my feet triggered just from sitting criss‑crossed 😭

I’m trying to find anyone whose symptoms actually resemble mine, because mine don’t always look like the classic pictures/descriptions of EM (current dx is Lyme, Bartonella, Raynaud’s and EM-like symptoms).

For about 8 months I’ve had episodes involving my feet where I get internal burning/heat, stinging, raw or sandpaper-like nerve pain, and sometimes visible pink/redness and warmth. This time last year, I was running 50 miles a week. My body has been historically very resilient, but these days—not so much.

Heat, standing, walking and having my feet dependent can provoke it, but not consistently. Sometimes I can walk 15–20 minutes and recover pretty quickly once I stop; other times one part of my foot starts burning with very little provocation.

What’s especially strange is that the flares have become increasingly focal and spontaneous 5 months into treating Lyme, etc. I’ll be lying down at night and suddenly just my right big toe, one heel, or part of the ball of my foot will become hot/burning. I’ve also had episodes in individual fingers/hands. Entire foot/hand used to be involved. Nighttime flares have resurfaced recently become frequent enough to interfere significantly with sleep.

Other things I notice:

• Feet can feel warm/full and look pink/red after getting up in the morning.
• Standing still/dependency often seems worse than elevation.
• Elevation frequently helps, although not always immediately.
• Cooling can shut down a flare quickly, but very cold ice can actually be painful/uncomfortable for the nerves, it seems.
• Sometimes the foot feels intensely hot internally while it isn’t particularly hot to the touch.
• Other times the affected area genuinely is warmer/redder.
• Hot weather and warm pools are much harder to tolerate.

EMG was normal, ANA negative, and genetic testing for primary EM mutations was negative. I’m waiting for neuromuscular/autonomic evaluation for possible small-fiber/autonomic involvement.

Has anyone here had this kind of mixed vascular + nerve pattern, especially the one-toe/one-heel flares, internal heat without always being externally hot, or major nighttime flaring? And if so, did doctors eventually figure out what was driving it or find medication that controlled the flares? I know there’s a root cause in here

Not looking for a Reddit diagnosis — mostly hoping to speak with people whose phenotype is genuinely similar.

I've been taking misoprostol, and haven't , felt much difference. However, a few days ago, I forgot to take my morning dose, and was in sooo much pain! That's when I realized I hadn't taken a dose. But the last couple of days my pain has increased. And, I already have EM pretty severely. So, I haven't been doing good. And, have been crying again. Saw my Pain Dr this morning. We decided that I would take it 3 times a day to see if in fact it's helping me. I also just got my glp1 today, but I'm gonna hold off for a couple of days to see if the misoprostol is in fact helping. My next med will be mexiletine. I would love to try the hot baths, but I can barely shower. So, I don't think that's an option. Are there any other meds that have helped anyone?

Long time resident of this sub, first time poster - What the tittle says. I’ve suffered with EM since childhood… I’ve always enjoyed hotter showers, but I started doing baths… with the hottest water possible without melting my skin off…(and a boat load of Epsom salt - Costco is the most economically viable way for me)

I use like 2-3 cups per demonic possession, I mean bath. Daily.

6 months remission. Minimal flareups.

Obviously this will not work for everyone, but I beg everyone to try.

Has anyone successfully filed and received SSD for Erythromalagia? I reviewed the list of allowed allowances on the SSD website but EM is not listed. It’s quite disabling for many of us.

Diagnosis with dysaunomia 3/7/2020

My erythromelalgia, dysaunomia ( non epileptic seizure), trigeminal are controlled not 100% by my medication oxcarbazepine (300mg)twice a day and oxcarbazepine (150 mg) twice a day. Midodrine 5mg twice a day but take half twice a day now.
Erythromelalgia my feet still burns all the time, nerve pain. My knee has there moments but my legs are 80% better. Ill take it.

Dysaunomia: take propanolol 10 mg 2 times a day for work heart rate spikes

Hypermobility (EDS). Ribs, shoulders, hips, knee, neck pain and more working on pain management. Physical therapy helps for putting joint together but not for pain.

Trigeminal neuralgia is fully controlled so far by Baclofen (10 mg) three times a day instantly helped.

Small fiber neuropathy, Venous (peripheral) insufficiency. Not much to do for the pain. I have cream but only works so much.

Head pressure was from narcolepsy type 2 which is so far been going great by Doxepin. Diagnosed: October 21,2025 Narcolepsy: falling asleep at the wheel can feel my eyes wanting to close. Falling asleep standing up, watching tv, and sitting talking to someone. Couldn’t enjoy afterwork activities without the urge to sleep.

Narcolepsy update Aug 8, 2026: taking sunosi (150 mg) once in the morning before work and amphetamine (10 mg) twice a day. Armodafinil (250 mg) once in the morning. Unfortunately they stopped working so i have to take them again after 4 days and see if they start working again.

Svt and pots seizure have been going great with Propanol medication especially need when i go to work as its physical SVT:8/28/2023

Was not GERD (Nov. 14,2022) it was Gastroparesis confirmed by a test Gastic emptying 7/21/2026 solid phase. Gastroparesis: Metoclopramide (10 mg) twice day. sucralfate 1 gram tablet 4 times day but i take one once a day. Maalox, colace i dont i picked them up yet 🫠.
Too new to see if i can eat solids without pain.

Mild enteritis/gastroenteritis (2025) dysphagia to solids leading irritation esophaitis. EGD with bilious gastric fluid and candida esophagitis was started on 2 weeks of fluconazole. GES with moderate delayed emptying. We discussed starting Reglan on 7/21/26. Esophogram was normal. KUB or 6/25/26 with large stool burden.

Pelvic congestion syndrome: (2025) 4.4cm going through that as of last week. More than likely surgery needs to be done. Updates in a week or so. Decisions to be made. Nut cracker and may thurner syndrome compressions.

Back Arthritis: 6/3/2018
Paroxysmal supraventricular tachycardia (HC CODE
Cervicalgia
DOE (dyspnea on exertion)
Lumbago

I tried misoprostol (just 100 mg) today and it seemed to help a bit with the redness/burning. Has anyone tried it in a cream? For those who have seen benefit, how long did it take to see improvement?

Also, For those of you who have compounded creams (ketamine etc), what base do you use?

Posting this here in case it helps anyone else. I’ve had erythromelalgia for about 2 years. I also have lupus, so I suspect it’s secondary to that.

I’ve been taking a high dose of oxcarbazapine because it’s the only thing that helps. I’d tried gabapentin, Lyrica, and ketamine lotion, but they didn’t do much.

Recently, I decided to try low-dose tirzepatide for lupus. I found a random online doctor/pharmacy that specialized in off-label uses.

I’ve noticed some reduction in joint pain, but the pleasant surprise has been a dramatic improvement in my erythromelalgia. I’ve been able to reduce the oxcarb down to a lower dose and feel a lot better.

Hope this helps someone else!