1. < Autoimmune Diseases

Erythromelalgia: What medications or therapies have helped you?

Posted by cherman @cherman, Oct 2, 2022

Just opening for anyone to provide the helpful things they recommend for EM.

Currently only in pregabalin and cBD oil for feet.

All comments on nutrition and therapies welcomed.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

chme | @chme | Aug 8, 2023
In reply to @lacy2 "Sorry to hear of your symptoms .. I have written mine here in a different section...." + (show)
@lacy2

Sorry to hear of your symptoms .. I have written mine here in a different section. No help. Had since June 2022 started burning cheek but no redness then both cheeks sometimes redness sometimes not, out of the blue, no reason. No sun, heat etc. Still have it. Waited 7 months to see dr who helps local dermatologist, he was so nice, but didnt think it was in his field. Then saw Neurologist had seen before, same thing, not his field.. doesnt know what it is. Sooo. Internet searches for me and I put together a binder with about 6 sectins on six things could be and by then mostly at night during night up to 5 hours - took selfies of face but no one seemed interested in seeing. So I have binder with sections now what? Only thing helped a bit was cool pads from fridge not freezer and trying to get back to sleep holding them against face.. sometimes down neck, tops of shoulders etc. Never had allergy testing. Nurse at clinic would not take any action... so now just try and keep bedroom cool and use fan every night but still occurs... like other things, just putting up with it. Drs./N.P.'s are not familiar with this problem unless its Rosascia which first dr. thought not. ... Along with other non-life threatening issues like F.I., P.N>, tinnitus/hyperacusis/inner ear pain etc etc it's a bit much to put up with but nearing 80 I hope not to wake up one day! But for those with this with lifetime ahead of them, WHY is there no knowledge/help just because there is not a simple blood test or such? Maybe check web site: Erythromelalgia.org may help.. best of luck to you. J.

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I was first diagnosed at 78. Have positive ANA but repeated tests find no related specific autoimmune conditions like lupus or RA.
Think EM is fully diagnosed with symptoms not tests.

Please keep posting especially when having good days.

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chme | @chme | Aug 8, 2023
In reply to @drolker "I have Erythromelagia also. I posted my treatment with a special cream in a prior post..." + (show)
@drolker

I have Erythromelagia also. I posted my treatment with a special cream in a prior post . It does help me . Try to find a Rheumatologist that will examine and treat you . I see a Rheumatologist at Johns Hopkins in Baltimore MD . Where do you live ?

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I have seen a rheumatologist and neurologist. Neither had a definite diagnosis. I will ask my primary whose first said EM and has been the most helpful for the cream. Thanks

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1 reply
mjohn | @mjohn | Aug 8, 2023

Another excellent resource for EM is called: Erythromelalgia - Fight Fire With Fire. It is an excellent support group, and many of its members have tried "Bob's Protocol" with great success. My small fiber polyneuropathy started in 2017, and then EM developed in 2019. Those two conditions are closely related.

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Valerie | @lacy2 | Aug 8, 2023
In reply to @chme "I have seen a rheumatologist and neurologist. Neither had a definite diagnosis. I will ask my..." + (show)
@chme

I have seen a rheumatologist and neurologist. Neither had a definite diagnosis. I will ask my primary whose first said EM and has been the most helpful for the cream. Thanks

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I saw dermatologist and neurologist, both said not in their field. No rheumatologist in our area. Been a year with no diagnosis. I made jump a 3 ring binder with 8 possible causes... but no one interested in it. Mainly face then down neck etc and sometimes arms and legs would use up lots of cream and then careful on face as might get in eyes and have glaucoma etc etc ... and so it goes on. Five hours at a time and now heat, stress and ?? Seem to start it the burning is often red face but not always, I am a jigsaw with many pieces missing!

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Valerie | @lacy2 | Aug 18, 2023

...as live in small city with not a lot of specialists per population, I read on this web site how many tests people have had - even if no diagnosis - to rule out varous illnesses etc., am afraid that is lacking where I live... I researched and even spoke to dermatologist about remote possibility of Carcinoid Syndrome... a urine and blood test - he mentioned it in his report but nurse practitioner taking no action. Later I told him N.P. not taking any action and he said "well find someone who will." But he couldn't as not his field. Why the reluctance to give us tests... even his report suggested it.... so over a year now and just coping on my own an still researching. I am even to the point of paying for the tests but not allowed in Ontario, Canada!

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1 reply
chme | @chme | Aug 18, 2023
In reply to @lacy2 "...as live in small city with not a lot of specialists per population, I read on..." + (show)
@lacy2

...as live in small city with not a lot of specialists per population, I read on this web site how many tests people have had - even if no diagnosis - to rule out varous illnesses etc., am afraid that is lacking where I live... I researched and even spoke to dermatologist about remote possibility of Carcinoid Syndrome... a urine and blood test - he mentioned it in his report but nurse practitioner taking no action. Later I told him N.P. not taking any action and he said "well find someone who will." But he couldn't as not his field. Why the reluctance to give us tests... even his report suggested it.... so over a year now and just coping on my own an still researching. I am even to the point of paying for the tests but not allowed in Ontario, Canada!

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So sorry to hear this. Even with all the tests to discover underlying cause. Nothing or not the right test. So diagnosed with idiopathic EM.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 19, 2023

@lacy2 @chme you sound as though you’re getting nowhere with finding a diagnosis and treatment. Here is a link to the Genetic and Rare Diseases (GARD) website. It can help you find a doctor.
https://rarediseases.info.nih.gov/contact/
Valerie, I know that you live in Canada and I don’t know if GARD has lists of doctors there, but ones in northern states might know of one. Getting these diagnoses at an older age just isn’t fun, is it?
Will you give GARD a call and let me know what you learn?

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msophie | @msophie | Dec 12, 2023

Hi from Norway 🙂

My doctors think I might have Erythromelalgia as a consequence after leukemia treatment and 2x bone marrow transplants 10+ years ago. I am used to dealing with a lot of different symptoms and issues after the long and heavy treatment, but Erythromelalgia is new to me (and most of the Norwegian healthcare system).

Now I'm just so tired and sad because I feel like the leukemia has ruined so much of my future, and here's just another painful thing I have to live with.

The last month I've been taking Aspirin daily with no positive effect on my fingers (they are the most affected). Yesterday I got a prescription for Alpha Lipoic Acid, and now I am wondering if any of you have any experience with this dietary supplement? Please say yes, and that it helps 😉

Anyway, I would be very grateful for any good advice.

Best wishes,
Maren Sofie

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raebaby | @raebaby | Dec 13, 2023

I take alpha lipoic acid after getting neuropathy from chemo from breast cancer, I take many other things too, but my cancer doctor mentioned it.
I thought I had erthromelalgia for 20 years. I read somewhere that Nepdipine could cure it. It stopped immdeiately after my first pill, but we learned it wasn't eriythromelgia I had, it was chilblaines. I would get it in cold weather and my feet couldn't adjust to the cold. I had red sores onthe bottom of my tooes and could barely walk.
I still take Nephedipine for high blood pressure along with atenolol.

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chme | @chme | Dec 13, 2023

Thank you. Will ask about this. 🙏

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