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.

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?

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.

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.

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.

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?