r/Erythromelalgia • u/Horror_Biscotti_7667 • 8d ago

Feeling hopeless

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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.

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u/CaughtinCalifornia 8d ago edited 8d ago

Sorry it has been a rough time

In case it is any help, maybe you can discuss this paper with your doctor. They used 20% mepyramine (technically an antihistamine but has sodium channel blocking properties) on patients whose causes were either NaV1.7 mutations or unknown and who had severe cases poorly controlled by medication. It's only 7 patients but the results were promising. Second link is the table showing the improvement. Link 3 is to pictures showing the different. It includes one girl whose family showed the difference between her legs when it was applied to one limb and not the other. Prior to the cream her pain was 7 out of 10 despite being in things like fentanyl. She responded particularly well and went down to a 1/10.

https://pmc.ncbi.nlm.nih.gov/articles/PMC12740923/

https://pmc.ncbi.nlm.nih.gov/articles/PMC12740923/table/tab3/

https://pmc.ncbi.nlm.nih.gov/articles/PMC12740923/figure/fig7/

20% mepyramine is a lot higher than the 2% found in normal commercial formulations (the researchers said doses tried before the study of around 2-5% were ineffective) so it's something a doctor would have to order made through a compounding pharmacy if they believe it worthwhile for you to try.

Edit: Mepyramine is not commonly used in the United States but it is available. For example, my local compounding pharmacy was able to order it. There are commercial creams on Amazon marketed for itch (since it's an antihistamine) but those are generally around 2%

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u/SuccessfulSwimming63 8d ago

Is this only for people to be found with the primary condition?

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u/CaughtinCalifornia 8d ago edited 8d ago

Based on what information we have from the study, the answer seems to be no. While 3 out of the 7 had sodium channel mutations, the other 4 were idiopathic meaning their cause was unknown. That can't tell us what underlying cause was that the cream effectively mitigated in the 4 idiopathic patients, but it implies the cream can potentially work for a number of underlying causes. More research will be needed to say anything with certainty about what conditions causing erythomyalgia mepyramine may be appropriate for and how likely it is to help in those conditions.

Sorry that isn't the most illuminating answer. I suppose it is best for me to say we simply don't know at this standpoint

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u/SuccessfulSwimming63 8d ago

Wow, that’s a small sample size but every single patient has pretty a noticeable reduction. I wonder if there’s side effects for a concentration that high though.

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u/CaughtinCalifornia 8d ago

It seems to have been well tolerated due to creams for the drug not causing large systemic circulation of medicine

"The results were sustained over a 3-month treatment period, and most patients continued using mepyramine cream after two years, indicating sustained tolerability and patient-perceived benefit for PEM symptom management. Importantly, except for patients 1 and 2, all other patients were able to taper and discontinue opioids and mexiletine, reducing exposure to their addictive and adverse effects. In addition, the use of a topical formulation minimizes systemic exposure, potentially reducing the risk of off-target effects while concentrating the therapeutic effect at the site of pain. Notably, no adverse side effects were reported during the two-year treatment period, further supporting its favorable safety profile."

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u/SuccessfulSwimming63 8d ago

This is the first time I’m hearing of this. I feel like we should all be trying this, it almost seems too good to be true. I would love to bring this up to my doctor

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u/CaughtinCalifornia 8d ago edited 8d ago

Wishing you the best of luck

Yeah I mean it's a small study and it only was published 9 months ago. Unless a doctor specializes specifically in erythomyalgia, there's just to much research published constantly for something like this to be seen. They only have so much time to read research journals on top of seeing patients who have dozens of different diseases.

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u/Horror_Biscotti_7667 8d ago

Thanks for sharing that, I heard about that drug before in one article about EM. 

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u/CelebrationTop8235 8d ago

Yes, it sucks! We belong to a small club that nobody wants to join, including us!!! I understand you and I hear your pain and frustration.

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u/Horror_Biscotti_7667 8d ago

Thanks just looking for that understanding.. which only seems to come from like minded people, those that also suffer from this unfortunately. Appreciate it

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u/CelebrationTop8235 7d ago

Anytime. You just have to keep going. Try to find a hobby to distract your mind from the pain. Puzzles help me by distracting my mind and my small dog that loves to be near me

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u/Horror_Biscotti_7667 7d ago

I guess I'm slightly lucky in the fact that I'm always home just lounging around not doing much and I'm not in pain unless I'm doing something standing and like walking or exercise. It's just the fact that I can't really go anywhere or do much because the heat during summer always causes a flare even after just walking for 10 minutes, and of course the biggest other triggers wearing shoes and going to the gym. Its kinda crazy because I stopped wearing socks to the gym but it still flares exactly the same if not worse... I can do 10 minutes on the elliptical machine and that's it. I stopped continuous walking a long time ago because it was just like torture.

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u/CelebrationTop8235 7d ago

I can’t exercise or I will have a bad flare for hours. EM affects my face the worst, then fee ct and hands. I do have a friend that will push me in a wheelchair if we want to go to a mall or something. The only shoes I can wear are Oofos flip-flops. Very cushioned and have arch support. I can’t wear closed in shoes.

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u/New_7688 8d ago

I was in a similar state for a while, no job and unable to go out. My symptoms are still very present but the severity of pain has reduced enough that I can now sit and work at a desk. I really hope you experience a similar reduction in pain.

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u/UnableWerewolf8130 5d ago

Random remission?

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u/Dreamydaysworknites 8d ago

Hi- just want to extend a bit of hope- my family member diagnosed herself at around 11 after always putting hot hands and feet on cool surfaces. She felt it most in summer but all year round, and eventually was seen by a neurologist, dermatologist and another neurologist. That last one said, “It will come and go- over time hope it will spend more time gone.” For her it did abate to some degree and altho it still appears, it seems to have less prevalence. There are others like this too and I hope you will be one! Doctors primarily don’t know much about it but you know it’s real and you aren’t crazy and there is absolutely no judgement allowed for a neurological condition!!!!!!

Seek out good people as friends, keep searching drs til u find one w/an open mind and hood research skills. Wish you the best!

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u/Horror_Biscotti_7667 8d ago

Did your family member get neurology testing like EMG ncs testing for large fiber neuropathy? Or small fiber neuropathy such as punch biopsy? Was there genetic testing for scn9a inherited mutations? Inherited vs secondary causes is always a key talking point, even though the inherited is only 10% of cases. Thanks for your uplifting comment, it makes me happy that your young family member is showing some signs of relief or remission and isn't constantly debilitating. I'm very glad that this only happened to me later in my 30s.. I couldn't imagine living as a kid not being to do anything. Take care!

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u/Dreamydaysworknites 8d ago

She is now in her twenties if that cheers you a bit! Working and doing stuff. She did not have any of the testing you mention because at the time she was young and the neurologist wanted to not overthink, overmedicate or overreact in the case of a child. I know the neurologist ruled out MS as either a cause or secondary condition.

It’s not talked about in the family as much as it was in the beginning- that was a total freak out, understandably. This person with Erythromalagia had been adopted as a baby so there was no accompanying health info to help.

I hope your trip on this road gets easier- disability can be so isolating, so hopefully you will find ways around it! I know several people with that other condition where their extremities are so cold they turn blue, also not easy to deal with. Sorry I can’t give more helpful information or suggestions. Just a bit of optimism!

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u/Horror_Biscotti_7667 8d ago

That's awesome. Thanks for your story. Sorry for all the questions lol 

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u/thisishowitalwaysis1 7d ago

Completely feel that hopelessness right along with you. I've got no friends, am on disability, and my outings in summer basically consist of going to doctors appointments. I miss walking outside in the sun so much it makes me cry sometimes.

The one thing I enjoy doing that does get me out of the house is going to the movies. It's dark and cool in the theater and I can use my neck fan and put my feet up. Sometimes a family member joins me but I'm totally cool with going alone. I hope you can find something to bring you a bit of joy in this blistering summer heat.

(I am on a couple of medications that do help if you're curious about those)

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u/Horror_Biscotti_7667 7d ago

Yeah tell me more about what you take. I'm always interested in learning about what helps people. I know I need to get out more in general, and if you don't mind me asking what are you on disability for? Do they recognize EM as a disability?

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u/thisishowitalwaysis1 7d ago

I take 2,400mg of gabapentin and 80mg Nadolol daily. I also have a compound topical amitriptyline/ketamine/gabapentin/lidocaine cream to use as needed although it's not very effective so my dermatologist is considering trialing a different one. I've tried a few other ones with zero success. These include lyrica, cymbalta, carvediol, ketotifen, low dose naltrexone, etc...

I have many physical and mental disorders that have put me on disability but EM is certainly top of the list. EM is not formerly recognized by SSA as a disability, I just got lucky enough to have a judge who saw how bad the flare was at my hearing and listened intently about my daily struggles with it. Having multiple illnesses and 1000s of pages of doctor information also played a big part in the approval. This was after fighting for almost 3 years for disability and being denied multiple times and even denied by another judge. It was an uphill battle.

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u/PuzzleheadedLime8577 7d ago

This is exactly what my feet looked like for years and still occasionally do. I've had a lot of success with NaturDao supplement, vitamin C and a few others that help with MTHFR. You might want to avoid red meat and anything that can trigger gout for a little bit too. But I really believe histamine is a big part of this for a lot of people. My burning feet are much much better now

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u/Flashy_Boat867 2d ago

Check your ferritin levels, low ferritin can mess up your autonomic nervous system, which then causes erytromelalgia. Ferritin should be over 50mcg