Erythromelalgia: What medications or therapies have helped you?

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.

@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?

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

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.

Thank you. Will ask about this. 🙏

How are you doing now? I am spending most of my day on the couch because of the pain. I just read that new studies show that erythromelalgia may possibly be "a syndrome of dysfunctional vascular dynamics", so the pentoxifylline may just work for you. I just wanted to know who prescribed this for you, and is it helping to relieve your pain? Did you go to the mayo clinic? I think I might ask my primary for this to see if it will work. Stay strong. I hope you are finding some relief.

Have you tried Nephedepine. It helped me. It's a blood pressure drug that stopped the pain immediately in my feet.

@dipperlip1
Hi, when I read your post from 2022 about being diagnosed with EM, Raynaud’s and your toes swollen red and burning, I felt as if it were my words. So hard to get good rest, can’t say how many times I’m running cold water on them just to get to sleep. As you said, swollen and painful when your feet hit the floor then better after a few hours, all to start again by afternoon. I can be sitting in a recliner with feet up and watch and feel them swelling and hurting. I use to complain when they were so cold I couldn’t get them warm but that part is a breeze now. Mine are hot & swollen 75% of the day if not more.
Have you found anything that helps? Dermatologists gave me creams, didn’t help; podiatrist gave me cream that didn’t work and told me to quit smoking or I’d lose my toes because of micro-vascular disease. I can see that happening with Raynauds but when I told him I put my feet in ice water to get relief he said well that’s just the opposite, what about hot water. NOT when there red & swollen, can barely stand warm water.
Mine started in April 2022 @ 52 yrs old which I find strange. I did have Covid in Jan prior. Sorry I’m writing so much, I joined group to see if I could get in touch. Can I ask if your a smoker? I know I need to quit but won’t be in such a rush if your not. Not even sure how I see messages/replies on here yet but hope to talk with you soon. So sorry you’re dealing with these AWFUL, PAINFUL symptoms.

@dipperlip1
Cheesh - I could have written a good portion of your response. Ditto for me. I followed Jay Cohen's work for years. Sad we've lost him as a resource and ardent researcher. I too have both Rayanud's and EM (apparently lots of other people do too). I've tried maybe 12+ different medications over the past 20 years for EM. Nothing has been a magic bullet. Low-dose naltrexone seemed to help a bit for a while and then stopped working. Amitriptyline may help a bit but I'm unwilling to go to higher doses due to side effects and a possible connection to dementia (especially in elderly people...and I'm at the doorstep of "elderly"). Nothing else has seemed to make a difference. Sleeping is AWFUL and I'm chronically sleep deprived. I may give the Asper cream a try, since you mentioned it.

@hottoes10
Well, you're 3-4 years into this difficult condition and I feel for you. I've had it 20 years and counting; it started in my mid-40's. Raynaud's started in my mid-20's. I've lived in warm climates for the past 25 years so Raynaud's hasn't been so much of an issue (except going into the refrigerated section of Costco!). But the EM has been AWFUL and getting worse. My feet and ankles have been swelling too and I'm wondering if it's lower leg edema from some other cause or if it's due to the EM. How can I tell the difference? My feet are also swollen and burning 75% of the day if not more. 🙁 All the creams and oral medications I've tried over the years either did not help, I could not tolerate the side effects, stopped helping after initially giving me a tad of relief, or were impractical to use (like the creams). I am not a smoker so I can't add anything to your question about that. However, to the extent that EM is a vascular dysfunction, obviously if you quit smoking it can only help. Good luck in your journey to find something helpful.