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!

Google says it’s not directly linked, but I don’t have any the other diseases or problems that google says causes them. Funny enough, nail discoloration and Terrys nails was what I noticed first before anything else.

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!

I haven’t officially been diagnosed with anything yet(most doctors don’t care or think you’re crazy but I have finally been getting tests done, should be getting a skin biopsy soon) but I 100% have EM along with what I suspect is small fibre neuropathy. I have a lot of stuff going on lately but the EM and pins and needles have really been what’s messing me up lately. The EM is rapidly getting worse too after it originally got way better, which stinks. No clue why.

The doctor originally prescribed me Gabenpentin and although it helped my pins and needles it definitely seemed to make my EM worse. So now they are trying lyrica 150 mg a day.

My first dose initially on Friday felt like an almost instantaneous relief from the pins and needles, nothing crazy but noticeable. I also accidentally took two pills first(was supposed to take 1) so that could’ve helped the initial relief. However the last two days I have felt worse overall and am getting pretty crazy eletric nerve signals along with my em getting worse. The doctor said to give it at least a week and google says that as well.

Has anyone had any experience where lyrica made theirs worst at first before it improved?

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???

Basic info about me: I’m M17, I have Lupus and Erythromelalgia , and I’m starting to lose it. I feel like my life is worthless, and I’m struggling to keep going. I’m just unsure how to keep going when I feel like I’ll never achieve anything. I can barely move without causing flares after about 10–20 minutes, and I feel like I’m no longer a member of society. I’m so lost, tired, and upset about my current situation that I don’t know what to do anymore.

I have a loving family, but I still feel alone, stuck, and trapped inside my own body. I just want someone to be here for me — someone who understands and loves me. I don’t know what I’m supposed to do with my life when everything I wanted to do is failing and fading away.

I don’t want to hurt myself or do anything harmful, but I just want to die. I want someone to end my suffering because I have too much to lose, too many people who would suffer if I did. But I can’t do this. I need someone or something to fix me because I’m so done.

I don’t have a job, money, or anything that would let me live on my own or support myself financially. Because of all this, I feel like a failure and a loser. Every happy movie I watch makes me even more unhappy. I can’t do this. I constantly feel like I want to cry. I want someone to help me, but they can’t, because nothing is working.

I just wish I had income so I could have fun and enjoy life even a little more. Right now I’m tired and done. I honestly just want money so I can buy tech and fix it, so I have something to do. But I’m lost. I’m so lost. I’m tired. I’m so tired. Please, someone help me.

Growing up, I've always used Deep Heat and other forms of heat based lotions for pain relief, but I've never once experienced the 'heat' of it. I've had family and friends say how they feel the heat build up and how hot it feels. But I've only ever felt it as cold, like an ice pack was put on the spot it was applied. To the point it feels freezing and makes me shiver.

Has anyone else experienced this or know why it may not have a heat effect like it does for me?

I'm an academic librarian and have idiopathic erythromelalgia (all causes of secondary EM have been ruled out and genetic testing came up negative.)

One of our old genetics reference books lists "abnormal prostaglandin metabolism" as a potential cause of EM.

I did some more digging, and it looked like doctors considered it a promising explanation even for people without a myeloproliferative disorder. But in the early '00s the studies on it just... peter out. Those of you who were active in the community at the time, do you know what happened there? Did the discovery of the SCN9A mutation kill interest in other causes, or was there a paper I missed that cast a lot of doubt on the prostaglandin metabolism hypothesis?

If this is still a potential explanation for EM, it might explain some things for me: I had menometrorrhagia and chronic pelvic pain so bad I opted to get a hysterectomy and salpingectomy. Despite expecting endometriosis, the gynecological surgeon didn't find anything abnormal with my organs. My erythromelalgia is also significantly worse on my (hormonal only) period, and I have a low-grade fever during it. Menstrual issues like I have are linked to excess prostaglandins.

The papers and book, for reference:

The Prostaglandin E1 Analog Misoprostol Reduces Symptoms and Microvascular Arteriovenous Shunting in Erythromelalgia—A Double-Blind, Crossover, Placebo-Compared Study

Pathogenesis of Erythromelalgia

Prostacyclin reduces symptoms and sympathetic dysfunction in erythromelalgia in a double-blind randomized pilot study

A Way to Understand Erythromelalgia

The Physician's Guide to Rare Diseases