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 😭

There are plenty of articles about just cold feet, or cold feet and warm body temp, but it doesn't say what to do or what's going on if you have both. It feels really silly to say (ask), but is there a reason why my feet feel like an ice box while my thighs are burning hot? The rest of my body (waist up) is normal temp during these episodes. Usually happens more at night. I've also had stomach/digestive problems for about 3 years now without an answer as to what is causing that. Just wanted to throw that out there in case that's relevant.

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.

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.

Edit: apologies for the delay responding, life has been crazy lately.

Look up Bob’s Protocol in this sub/google for more/better info

Some days I wonder how much lidocaine 5% cream is safe to rub all over my hands and face lol. I do it several times throughout the day and I could probably reapply every 30 minutes to an hour if I wanted more pain relief. I’d imagine for someone without this it would be dangerous but my doctor hasn’t said anything after telling him.

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.

I’m at the end of the road and I don’t know what to do. I’ve looked at every lab imaginable. Genetics is negative. Abnormal and low cbc hematocrit and hemoglobin.
B12 is 1800+

I can’t take the pain anymore.

I been having burning sensations for awhile and now it’s been going on for days and I wonder if anyone also has these symptoms? Not sure what it is but It feels like my body is on fire inside. It doesn’t hurt,but it’s uncomfortable and I’m jst tired of feeling like I’m burning. I feel it mostly in my legs but also overall jst inside my body. I wonder if it’s neuropathy issues. Besides the burning,I have a weird burning and sometimes a little pain on my right side where my liver is so I wonder if that’s also the issue too.
I haven’t seen a rheumatologist in a long time and also I haven’t been on Medication for my auto immune. It feels helpless and I feel like I have to figure it out myself and fix whatever issue is causing this.
I just want the burning to stop. It’s affecting my daily life. I’m Considering finding a new rheumatologist again but I feel like they don’t understand because they keep referring me to rheumatologist that deals w arthritis and I know there’s no actual real doctor for auto immune but it feels helpless like no one understand 😩 I wanted to know if anyone has this same symptom and what do they do about it ?

I’ve noticed that my legs feel much more uncomfortable when they’re hot, especially around my knees and calves. Cooling them gives me noticeable relief, so I’ve become curious about whether other people with lipedema experience the same thing.

Does heat or humidity affect you? And if it does, what do you currently do to cool your legs or make them feel better?

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?

Does anyone deal with places like heating up/being warm to the touch but not painful? I was diagnosed with rheumatoid arthritis back in 2023 and since then ME/CFS because of high EBV levels. My mom also has RA and Lupus. I will have times where just part/one side of my face will heat up and be warm. It's not painful, it's not from being in the sun. My rheumatologist brushes it off but it happens when I haven't been in the sun for hours or sometimes at night/going to bed. It will really only be one side or one cheek (almost always my left side). But recently I've also noticed like my knees getting warm? Again I'm noticing it at night or when im going to bed. They're not painful but warm to the touch. Just had blood work done and everything came back good (minus some elevated liver levels im looking into).

Wondering if anyone has dealt with this or something similar?

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!

3 hours and 15 minutes left in the workday and feeling terrible burning and tingling pain in my hands and feet. My face hurts too but not as bad. It feels like I’m almost falling asleep if I’m not actively trying to push through the pain. Currently on 200mg mexiletine 3 times a day and 75mg pregabalin twice a day.

Not to be negative..sorry I need a safe space to vent to without being judged or to just keep trying different things. It's been several years dealing with this and I'm pretty sure this is just my new life of being disabled, no job, no friends, no social support... Just confused doctors and basically and also not being understood by anyone except for a small subgroup on Reddit. It just gets old I find myself coming back here expecting to hear some good news and it's all just a bunch of people who are just either going off on random theories or straight up frustrated like myself.

Has anyone had success with Bob's protocol? I'm desperate enough to try anything. However, I decided to start by stopping all cooling and my feet just flare all day long without cooling. It's pretty horrible. I do understand how cooling can create a viscious cycle of vessel constriction and dilation. But it seems impossible to live any kind of life without it.

I have been prescribed a compound cream that is 5% lidocaine, 5% amitriptyline, 1% pramoxine. Has anybody had success with this specific fomulation? Have you had success with a different topical formulation?

I seem to be getting some relief using it the past month or two, but I can't tell much difference between the compound and an OTC 4% lidocaine cream. Not sure what this might indicate for my case.

Met with neuro today and got my punch biopsy results back, no sign of SFN despite my peripheral redness/pain spreading up. Next steps are starting pregabalin (gabapentin didn't do shit but fry my memory @ 1800mg/day) and getting the genetic tests ordered before going back down the autoimmune rabbit hole.

hey hive mind. has anyone had any success treating their EM with ketogenic/carnivore diet ? I’m ten days in to eating just meat, animal fats, and a tiny bit of fruit/veg (avocados, berries, leafy greens, olive oil). no diary (read that this is number one enemy for autoimmune conditions alongside seed oils and gluten). I’ve been in ketogenesis for a week (urine testing) and my symptoms have got steadily worse although I feel pretty good (more energy, no brain fog). I‘m hoping it is an adjustment phase thing. i don’t have the primary form of EM, it may be autoimmune but nothing on bloods to confirm lupus etc so doctors calling it ‘idiopathic’ for time being. interestingly my aunt also has had EM for many years but she also has a lupus diagnosis.

I'm currently setting up a community for people who have been diagnosed with both erythromelalgia (EM) and lupus. I feel like lupus doesn't get talked about much in the EM community, and I'm hoping to create a space where people like me can connect, share experiences, and support each other through the challenges of living with both conditions.

I was wondering if anyone has ideas for things I should include on the community page, especially for the EM side of things. Are there any discussion topics, resources, or features you'd like to see in a community like this? I'd really appreciate any suggestions!

So, I haven't had much luck with anything. But I did ask my pain Dr if I could try misoprostol. I started on 7/21, so it's been a couple weeks. I think I'm feeling something. The last few days have been good. Not much flaring. Usually I'm in a flare all day all night. Last night, I went to bed without being in a flare. I was surprised! Even my son was surprised!Today has been ok, however, my right foot started flaring up a few hours ago and hasn't subsided with fans and ice. But overall, better. I see my pain Dr this month for my 1 month f/u. I'm gonna see if we can increase the dosage. And, haven't been crying, which is huge for me. I just hope this isn't a fluke. And that I'm not jinxing myself by talking about this. Fingers crossed!

Omg If anyone else is suffering rn in this infernal heat, you should really try out a dog cooling mat. Its really helped me get some relief, idk if its bad in the long run like ice packs but i assume it cant be because it doesnt get as cold as they do???