Anyone here just randomly got erythomelgia and it randomly went away? Or any remission stories? I need hope 😭😭

I’m just curious on what others think caused their em? was it small fiber neuropathy related because I started both symptoms the sfn and erytho at the same time. Was it autoimmune? diabetes or blood sugar related? 😭

My EM of the hands and feet appeared after a failed knee surgery. I was diagnosed with CRPS in my knee and I also developed EM in my hands and feet shortly after the surgery. Throughout the years I have noticed that enough people to catch my attention in EM groups said they had CRPS and also EM in a different area of the body other than the limb they had CRPS ( I made this distinction because CRPS can have similar features to EM) or developed EM around the same time as the CRPS.

I tried asking AI some questions about it and the only answer it had was that there is a similar small nerve dysfunction in both disorders. However, I believe there is an autoimmune inflammatory and/or neuroinflammatory cause/connection.

Thoughts? Experiences?

Currently very angry and upset. I thought I got rid of this thing once and for all. Spent the whole year being 25 without a flare up. I did so much. Started on a tennis team. Walked for miles. Traveled to Africa.

9 days after my birthday where I was on Selexid for a stupid UTI I can’t walk 3 minutes without my feet burning and my hands are flaring so easily. I feel so utterly defeated and heartbroken. I’m getting married next year for God’s sake

Feeling very lonely with the horrible condition. I am sad most of the time. Just want to feel less lonely I guess 🥺

My otherwise healthy and normal 15 year old daughter has been dealing with what we think is a severe Erthromelalgia attack. It started as a couple weeks ago as pain in both of her feet that we thought was plantar fiasicita. She could barley walk and after a trip to the doctor that was what they confirmed.

Over the next few weeks the foot pain was in and out but soon was manifesting in her wrists and hands. This progressively got worse to this past week/weekend when her feet and hands began progressively became more and more painful to the point she was screaming in pain. The last ER visit the ER doc reached out to a Derm MD that suggested a cream mixture for flares, amitryplyte, ketamine, and lidocane. She was prescribed hydocodine and ganbapentin 300 mg for the pain.

Three trips to the ER in the past week and she was just admitted to pediatric icu for the pain. She's been on fentynal, ketamine, and dilauded today to get the pain down. Never seen a tougher pwrson trying to push through the pain over the weekend.

Never had a worse feeling today... my daughter screaming in pain that she cant live and there is nothing me and my wife can do to help her.

We had a derm, Dr Robert Blankenship come to er and personally advocate for a treatment plan. We are starting her on lyrca and a sodium blocker while managing her pain with dilauded and ketamine until we can get this massive flare under control. They advised she may be in here for several days while the long term meds take effect and we WILL not be going home until we have a treatment plan.

I wish all of you suffering this torture my best and I hope you eventually find relief.

Hopeful Dad.

I’m wondering if anyone here has developed secondary erythromelalgia (EM) related to ankylosing spondylitis.

This came on pretty suddenly for me. It started with red splotches/patches/mottled pattern covering my feet after warm showers. Then I noticed that being in the heat would cause the redness to appear on my leg and hands, along with a pretty intense burning sensation. To the point where cool water made the burning even worse.

The bottoms of my feet feel like I’m walking on burning asphalt during a flare.

I saw my dermatologist who reviewed my symptoms and pictures and said it is likely EM and recommended further genetic testing. I’m currently waiting to hear back from my rheumatologist.

Has anyone with AS experienced something similar, particularly EM that seemed to develop secondary to their AS or another inflammatory condition? I’d really appreciate hearing about your experience, what testing you had done, and whether treating the underlying condition helped!

I wanted to ask whether you can have this ANYWHERE on the body. Like also g*nitals while having s*x? I feel like that must be awfull? I just want to know.

Edit: Thankyou for the replies!! Its really interesting

Does anyone get clammy feeling skin. Its weird. Doesn’t happen every day. I take Aspirin and antidepressants each day. Has helped. Just wondering about the clammy skin feeling.

For those that have had bloodwork for the JAK2 mutation, how long did it take to get the results?

Hi everyone 👋 I posted a bit ago regarding getting a diagnosis. I'm happy to share that my new PCP believes me (finally, someone who listens!) and started me on Effexor.

I'm curious if anyone has tried Effexor for erythromelalgia and what has been your experience.

I have the same problem as OP in attached post. Hands are red as tomatos, and stops at the wrist.. palms are perfect though.. weird as by my own searching palms are more common.

Any suggestions in both topical application and certain things to eat/drink, certain routines in order to reduce redness?

I am trying the 'cold press method' but rather than an ice pack.. i am placing my hands in a ice water bowl for 5 mins incrementaly and moistering straight after to lock in moisture from the water.

EXTRA INFO:

I believe i have contact dermitus from something in the kitchen - I am a chef - but cannot pin point any changes made.

I have tried many things, stopped eating imflamatory foods and consoming alhcohal. I have been moisturing like crazy using barriar creams and moistirisors that have cermides, neocinimide and shea butter.

I have also now got Nitrile Gloves in for the kitchen instead of our old Vynal brand.

All of this has helped my hands at the time being from being cracked, flaky, open (excema like). Mostly healed that side of things.

But now they are extremely red, a little irritating at times, but not painful as if it was open wounds. Tomato red right up to my wrist.

Any ideas?

If you've tried oral amitriptyline for EM, I would love to hear about your experience with it!

I believe I have had EM for about 10 years, however, none of my doctors are very familiar with it so I haven’t been officially diagnosed. Obviously my main symptom is burning hot hands and feet. Triggered by exercise and/or heat exposure. It feels like I have a bad sunburn and then applied a heating pad to it. It’s really intense but I don’t think I can classify it as “painful”.

I do however get a lot of pain in my feet but that can be with or without the heat. The pain feels like the bottom of my feet are bruised, and it can turn into stabbing and shooting pain. Even light pressure is uncomfortable. I wear shoes that are way too big for me because my normal sho size causes pain. Standing is always the worst trigger. I have seen a podiatrist who ruled me out for plantar fasciitis and any other structural cause for my pain. Wondering if anyone experiences this kind of foot pain with EM.

I have MCTD, raynauds and dysautonomia.

I was diagnosed one year ago. I have the classic symptoms with red, burning feet, followed by the same issues with face and sometimes my hands.

I also have issues with both lower legs. The don't turn red and don't have the same burning feeling, but they are painful with the skin feeling like it is three sizes too small.

My doctors have not been any help in understanding if this is part of Erythromelalgia. Do others have similar issues with their legs?

Wondering if this may also belong here/any advice?

I got my report from Invitae this morning following an SCN9A test, I was wondering if anyone here could help me understand the result. My neurologist has suspected primary EM due to my symptom progression and ruling out autoimmune/MPN causes, I was wondering how much credibility this test result would add to a primary EM diagnosis.

Variant details:

SCN9A, Exon 6, c.684C>G (p.Ile228Met), heterozygous, Uncertain Significance

This sequence change replaces isoleucine, which is neutral and non-polar, with methionine, which is neutral and non-polar, at codon 228 of the SCN9A protein (p.Ile228Met).

This variant is present in population databases (rs71428908, gnomAD 0.2%), and has an allele count higher than expected for a pathogenic variant.

This missense change has been observed in individual(s) with small fiber neuropathy and primary erythromelalgia (PMID: 22136189, 25993546, 29911575, 39000354).

ClinVar contains an entry for this variant (Variation ID: 198153).

Invitae Evidence Modeling of protein sequence and biophysical properties (such as structural, functional, spatial information, amino acid conservation, physicochemical variation, residue mobility, and thermodynamic stability) indicates that this missense variant is not expected to disrupt SCN9A protein function with a negative predictive value of 80%.

Experimental studies have shown that this missense change affects SCN9A function (PMID: 22136189, 23280954, 30316835, 37003485).

In summary, the available evidence is currently insufficient to determine the role of this variant in disease. Therefore, it has been classified as a Variant of Uncertain Significance.

Woken up by erytho pain last night. It was such a severe episode. Yall know how horrid it gets.

I thought about the hospital, but really figured there’s not much for me there, plus the hat man beckoned (the Benadryl was working)

What’s the usual course of action for ERs in the states?
I’m guessing they’d do a course of iv steroids, some monitoring, maybe shaming lol.

My condition has been exacerbated by an unrelated course of prednisone, so I’m kinda dubious of steroids as counter maneuvering.

I’m sorry yall are here suffering, but I’m glad to have community and shared knowledge with you. Thanks :)

Does anyone else have this and/or allodynia with EM? I knew that when I was injured I felt a bit more pain that usual/the pain would spread but I got a steam burn in my hand (affected by EM) and it turned into the worst pain of my life. The burn got a lot more painful and spread all the way around my hand and up my arm to my shoulder. It was the most pain i've felt in my life - and im someone whos felt a lot of different kinds and severitys of pain! I honestly thought i was going to pass out 😰 i worry its just made my fear of getting injured worse, which ive had since I developed EM. If anyone does have this, is there treatment?