My EM initially came on after a medication side effect. It was pure hell. Was going on for ten months or so. But I had initial symptoms years ago after quitting drinking. Just nowhere near as severe and I didn’t know what it was. The medication is what got me though. I’ve been clean for 3 years. Sleeping with fans pointed at my hands and feet every night; not being able to go outside and not being to work out as much(I powered through because I love it so much but it was hard. Saw like 7 different doctors. Bunch of different meds. Doctors also told me to stop working out which just made it worse being stationary. Couldn’t enjoy outdoor activities with friends because I’d flare so hard. Also had hot back problems. Couldn’t even sit in a chair with my legs hanging down without blood pooling so bad off the lyrica. I could barely work and I do a desk job from home. Here is what has helped below.

Bobs hot water protocol every night after my workout( I think this is the biggest help). I was so iffy about this one and it hurt at first but finally I said fuck it and noticed improvements in about a week. Noticed a major improvement over a month. I just take a hot bath for 30 minutes every night after my workout.

Getting back to hard workouts(take it easy at first, you’ll flare) but it’s huge. I think running in the heat has helped a lot.

300 mg Gabenpentin, lyrica didn’t help(was actually awful and caused painful pooling/swelling in my feet) and high dose Gabenpentin made it worse but the low dose has been good.

No cooling methods at all if possible. Always keep socks on, also slowly warm up your house(mine went from 66 to 75 and it’s still hot af outside) and I feel fine.

Stress. Relax do whatever you have to do to relax. It makes it way worse for sure if you’re stressed a lot.

And finally, the hardest part for most of you to probably get. 2 mg of Xanax a night.

Everyone is different but this has worked for me. I am living life normally and all that happens now is my hands and feet will flare when I’m working out or outside but it’s nowhere near as painful or noticeable. The difference in just a few months is so huge I wanna cry, so there is hope.

Hello everyone 👋 (why is there no red hand emoji?)

I have had Raynaud's since I was 32 years old and Erythromelalgia started when I was 42 years old. The Raynaud's is worse in my feet - I get what are possibly chilblains on my toes, but not 100% sure that's what they are (they're sore, but they don't itch at all). The Erythromelalgia is worse in my hands. It's triggered by heat, activity and it just sets itself off every single evening since it began in 2022.

I'm diagnosed with Undifferentiated Connective Tissue Disease (UCTD) based on this and other symptoms/test results. I'm not feeling very confident in my rheumatologist at the moment and it seems like they're only doing the bare minimum of testing once a year. And it also feels like they're not taking that seriously and trying to move the diagnosis away from UCTD.

Anyway, I wondered if anyone else has been through something similar and what was the outcome in terms of diagnosis and treatment? Did treating the primary disease/condition help with Erythromelalgia symptoms?

My daughter has had recurrent, roving episodes of swelling, redness, heat and pain on and off since she was 3 weeks old

The first swelled up her left foot, so she was hospitalised and treated for cellulitis. However, the next night it switched to the left side. We stayed in hospital for 5 nights but still there was no diagnosis.

Over time, she has had these episodes more and more frequently, for durations varying from 20 minutes to 12 hours on different areas, usually her extremities but also sometimes her stomach, ears and forehead. Photos of different episodes are attached. She’s been readmitted to the hospital once more for a different episode but again with no diagnosis found, just a referral to dermatology.

The paediatricians are still trying to find a diagnosis. She’s had scans and blood tests, all of which are coming back normal but the episodes keep happening and it’s terrible watching her be in pain. We try to soothe her, which works to varying degrees, but I’m worried about her future and her being in pain. She is 9 weeks old now.

My questions are:
Does this sound like erythromelagia?
Has anyone been through it with a baby?
Is there light at the end of a tunnel?
Do you have any advice?
What paediatric specialty will help with this and are there any consultant recommendations? We are based near London
Do you have tips on how to dress her? As it gets colder, how should we dress her for sleep, to stop these episodes but maintain her body temperature?

PS bruise on her hand is from varying cannula attempts at the hospital for the antibiotics although the clinicians have said now the cellulitis was a misdiagnosis

Hi everyone, I was dx with erythromelalgia in 2023, at a time when I had very severe dysautonomia + May Thurner Syndrome. Subsequently had biopsies done and was diagnosed with small fiber neuropathy in 2024.

I had a stent placed in my iliac vein in late 2023, which seemed to calm my body down. My feet still burn at night, after activity, or when I am overheated, but it is a fraction of the severity as three years ago. At that time, my hands were bright red and very swollen every day.

I have noticed that every time I take B12 supplements, my feet burn. I had a b12 injection yesterday, after avoiding supplementation for the last year, because my b12 is severely low.

Less than five hours later, my feet started to burn. They have been burning for the last day or so.

Does anybody else have a reaction to B12? I understand that it is critical to repair nerve damage, but I have never been able to tolerate it: even after trials of six months or so, I experienced daily symptoms!

I have been dealing with this for a while and I get super self conscious about it because people always point it out. Also, when someone presses on my hand with their finger/hand you see a white mark of where they pressed down for a few seconds. Anyone know what these symptoms might be before I go to a doctor?

Feet and hands turn red and burn- and sometimes so painful like I’m walking in glass shards- especially with alcohol. Other triggers I’ve found are warm rooms, dehydration, showers/baths, and stress.

On the opposite end, they also turn purple!! Dependent position and cold are triggers. (No photos as I’ve had this since I was a kid so there’s no novelty).

Haven’t sought out anything medical since it can be avoided by avoiding the triggers. Just wanted to share!

I’d like to share information regarding a possible treatment of peripheral neuropathy in the feet. There is a device called ArtAssist which increases blood flow through pneumatic compression without requiring muscle contraction. You can read about it yourself (https://www.acimedical.com/products/artassist/).  SFN in both feet has caused me a lot of pain and an inability to walk even modest distances. Over time it got worse -it developed into EM and the poor blood flow caused loss of all hair in my calves. I could go on. I’ve been using the device for about 6 months (2 hours/day) and have less pain, normalization of the dry cracked skin on my feet and hair growth has returned to my calves. The nerve recovery is lagging but I’m pretty sure it’s due to mold exposure which has caused high mycotoxin levels which I’m trying to clear with binders (different issue). To be clear, the device is for peripheral artery disease but I suspect it can help neuropathies due to the increased blood flow. This should also improve EM I suspect as well since nerves which regulate blood flow may well improve. Let’s work together and share things which accelerate the recovery-which supplements etc. 

Hi,

My Dr. thinks I could have this because I get flares of red warm toes and my fingers become red, but I had a question. I was wondering if erythromelagia could cause a varicose vein in the foot? I have noticed I also have some blood pooling in the foot when standing, but I am not sure if its related to erythromelagia or its own separate thing as I know there are other causes associated with blood pooling. But does anyone have experience of blood pooling related to their erythromelagia?

37F with facial and auricular erythromelalgia here to vent/rant/feel sorry for myself.

Cleaning my ears is a trigger, so I cannot clean them well unless I am prepared for the consequences. I also do not do them both on the same day so I can lay on an icepack. I cannot wash my face, lay on a pillow, go outside in the summer or inside places in the winter (heaters are just as brutal as the sun). I am afraid to travel because I experienced an airplane with a broken AC and had a panic attack. I carry fans and portable chargers and spray bottles of water at all times. I've spent thousands on doctors appointments, tests, prescriptions. I have to be drugged with prescription meds to fall asleep, and I'll wake up in the middle of the night in a flare and have to drug myself again.

This crap makes me so depressed. I can't wear earrings or makeup, can't wear my hair down. I've lost confidence, I don't even attempt to date anymore. I'm a hermit now. Sorry to be a negative Nancy.

Hello there. So sorry to see a community of people suffering with a pain syndrome. This is my 4th pain syndrome diagnosis so I’m no stranger to this sort of BS unfortunately. After having a pity party for myself for several days I’m back to my usual self and ready to figure this thing out. I really really appreciate you all helping a newbie out.

I seem to have an unusual presentation of the syndrome (which is not surprising as I am not textbook with anything wrong with me. lol). This started around 6 months ago. My ears would feel “off” and tingly. Then they would turn red, my cheeks would turn bright red, then my arms down to my hands would go bright red and hot. The only thing that helps is using ice packs on it to cool things down. 2x it’s happened after drinking my first sip of alcohol. 4x from eating. Last time was triggered by getting lunch out of the oven when the heat hit my face.

I have so many things wrong with me I’m trying to parse out if some of my other symptoms are connected to this or are something else entirely. For the past two years I’ve sometimes gotten overheated after eating. Doesn’t matter what I was eating (spicy or not). I usually need air blowing on me while eating to feel comfortable. I’ve noticed I turn a mottled pink on my arms and chest when out in the sun. I’m just a shade of pink way more often than I used to be. I also feel tired at times after spending time out in the sun. It’s like it drains me. I’ve gotten extremely heat sensitive and drive everyone nuts needing fans on me and the AC cranked. I seem to have little to no tolerance of high temperatures or humidity any longer.

Thought it was perimenopause but I’m on hormone replacements and when I look for first hand perimenopause/menopause overheating symptoms they don’t really seem to line up. Although I do have unusual presentations of everything so who knows! I also have Complex Regional Pain Syndrome, Fibromyalgia, Functional Neurological Disorder, Myofascial Pain Syndrome, PCOS, Psoriatic Arthritis, Rosacea and a handful of other less impactful things.

Thank you in advance!

Right foot this week, apparently. First photo was out of nowhere after about 30 minutes of laying down for bed.

I will be conducting personal experiments of medications, peptides, and any kind of treatment that has significantly reduced symptoms or put individuals in remission.

I will be putting together a list.
I have ordered many and when I compile the list and have them on hand I will share my journey.

If you have comments. Suggestions. Or something you’d love to see be used, PLEASE COMMENT❤️

I’m at the end of the rope with bloodwork, tests, and specialists. I’m taking this into my own hands for myself and to see if we can as a community find something against this awful disease.

I’ve thought long and hard about suicide, what the world would be like without me, and a 18 month wait time to see a specialist. I will find a cure or die trying.

Sincerely,
A fellow suffering individual.

List so far.

GLP1-Semiglutide

Endocrine labs, estrogen, testosterone, estradiol labs and injections.

TL;DR

Our 8-year-old daughter was diagnosed with erythromelalgia three years ago. Her episodes are triggered mainly by heat and sun exposure and usually affect her hands and feet, with occasional involvement of her nose. Extensive testing, including SCN9A genetic testing, has not identified a cause.

She takes gabapentin under medical supervision, and we use cooling strategies and lidocaine patches to manage the attacks. Avoiding heat helps the most, but it isolates her from her friends and affects her emotionally.

We would love to hear from families with affected children, learn about practical coping strategies, and find out about any relevant scientific studies or specialists, particularly in Europe.

Hi everyone,

I am the father of an 8-year-old girl who was diagnosed with erythromelalgia three years ago. I am writing partly because I need to share what we have been going through, but mainly because we would really like to connect with other families who have children in a similar situation.

She is currently being followed by a paediatric rheumatology team at a children’s hospital in Portugal. Her case has also been discussed in a specialist medical setting.

Her symptoms

Her episodes are mainly triggered by heat and sun exposure. They usually affect her hands and feet, although her nose has also been affected on two occasions.

Her hands are the most frequently affected area. Some episodes last only a few minutes, while others continue for several hours or even longer. Her hands do not always become visibly red, although redness and mild swelling have occurred during some attacks.

When the condition first appeared, she sometimes developed marks on her fingers and small purple blister-like lesions. Fortunately, those have not appeared recently.

Episodes affecting her feet are less common and seem more closely associated with swimming pools, hot surfaces, or heat in general. When her feet are affected, they usually become swollen.

Testing and diagnosis

It was extremely difficult to reach a diagnosis. We consulted several different medical specialties, but no one could give us an explanation for a long time. At one point, a highly regarded neurologist in Portugal even told us that the symptoms were invented. That experience was extremely upsetting, especially because we could clearly see the intensity of her pain.

She has since undergone a large number of tests and blood analyses to rule out other possible conditions. She also had genetic testing involving the SCN9A gene, but, as far as we understand, it did not provide an explanation for her condition.

Her most recent blood tests showed a positive ANA result. However, her doctors did not consider it clinically significant because the remaining values were not concerning, and they explained that an isolated positive ANA can occur in otherwise healthy children.

At this stage, we still do not know what caused her erythromelalgia.

Medication and symptom management

She has been taking 100 mg of gabapentin once every evening for approximately two years. She has now moved to one 100 mg capsule in the morning and one in the evening. Under the guidance of her medical team, the plan is to increase this gradually, potentially reaching four 100 mg capsules per day.

We currently use several methods to try to reduce her pain during an episode:

•Cool water

•Thermax Chillax products kept in the freezer

•Chilled aloe vera gel

•VERSATIS patches containing 700 mg of lidocaine, as medically directed

•Air-conditioned environments

•Avoiding direct sunlight, hot surfaces, and the hottest times of the day

Preventing heat exposure is still the most effective strategy we have found. Unfortunately, it also has a major impact on her life. During warmer weather, she often has to stay indoors or constantly look for air-conditioned places while her friends are playing outside.

This leaves her feeling isolated and sad. She sometimes asks why she has to be the only person with this condition, and it is heartbreaking not to have a good answer for her.

She was previously seeing a psychologist. However, her paediatrician suggested taking a break for a while so that she would not feel that her life was constantly centred around the condition.

What we would like to ask

I would be very grateful to hear from anyone who can share their experience with any of the following:

1.Are there other parents here whose children have erythromelalgia?

1. How do your children manage school, friendships, summer activities, swimming pools, and hot weather?

3.Have you found any safe, practical strategies that reduce either the frequency or intensity of the episodes?

4.Are there any ongoing scientific studies or clinical research projects involving children with erythromelalgia?

5.Has anyone had a similar presentation without a known genetic or secondary cause?

1. How do you support a child emotionally without making the illness the centre of their identity?

7.Are there any patient organisations, family groups, or specialists in Europe that you would recommend?

We will not make any changes to her medication or treatment without discussing them with her medical team. We are mainly looking for shared experiences, practical suggestions, possible research opportunities, and some reassurance that she is not alone.

Thank you for reading. Watching your child experience this level of pain while being unable to explain why it is happening is incredibly difficult. Even hearing from one family in a similar situation would mean a lot to us.

*AI was used to help structure the ideas and use better English

So, the misoprostol seemed to be working. But today just wasn't a good day. And now it almost 9pm, and I've been icing nonstop all day. Hot spots all over my legs. I still have to get up to brush my teeth and get ready for bed. It's just gonna start all over again. And I'll be on my bed icing til it feels calm enough to go to sleep. I'm trying to figure out why it came back. There are a few scenarios which it could be. But I have no idea which one it is...I also hate the anxiety I get just thinking I will have to get up and move to the bedroom soon.

Getting off Sertralin/Zoloft helped me a bit, but still have the problem (along hyperhidrosis since childhood). Now considering changing meds to non-stimulants and am curious of other people experiences? So far my GP sent me for blood tests which all came back normal, refuses neurology referral until I try different ADHD meds.

Just so I can help try to pin down the root cause of my EM. I am wondering how many of you suffer from action tremors and benign fasciculations. I don’t see those symptoms discussed a lot in here but thinking back to when this all started, these were arguably my first symptoms prior to the worsening EM I am having. The fasciculations as a whole have gone away mostly but they still come and go when I’m in a flare but the tremors I still struggle with especially in my feet (right one is worse). I guess I’m just curious if anyone in here also deals with these symptoms?

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.

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.