Erythromelalgia treatment and autoimmune

@haileyrose Welcome to Mayo Clinic Connect! I’m glad you found this site and hope that you get the help you want. I wonder what that rheumatologist thinks EM is related to?! They didn’t sound too helpful. You might try contacting a university medical center or comprehensive medical center in your state for help. The doctors there are a bit more informed than community doctors. When I got sick with an autoimmune disease, the local doctors were completely stumped. Only 1 neurologist recognized the MRI results but didn’t know how to treat the disease. My husband called to university medical center in Denver and we were able to get an appointment. If the medical centers are too far away, they may give you a recommendation of a good doctor in your area.
OR, you can contact these rare disease organizations. They can help you find a doctor.
https://rarediseases.org/living-with-a-rare-disease/
https://rarediseases.info.nih.gov/. They have similar names but they are different!
Do you think it best to call the 2 organizations first before you set off on a road trip?
And how did you find Mayo Connect?

Hi everyone. I am currently waiting for test results to determine which underlying cause is associated with this very rare condition, Erythromelalgia (EM). I have had Fibro for years but i am currently recovering from a severe Fibro Flare. This flare was ridiculous! I developed a bunch of new symptoms, some still lingering, including brain fog and EM. Thankfully I was able to see my neurologist mid flare. He is who just diagnosed the EM. Now we have to find the underlying cause. The choices are not exactly Favorable. My dr seems to think it is autoimmune due to my symptoms and the fact that I developed Vitiligo this summer which is autoimmune. Needless to say I'm anxious to know what my enemy is. What it is I'm going to be fighting. Another symptom during this flare, which was not new , but extremely severe was whole body stiffness which has let up in degree of pain but still effecting me everyday. I do know doc is testing for Stiff Persons Syndrome as well as cancers and Autoimmune. I am anxiously waiting results and praying for the lesser of the evils, whatever that might be.

I’m so sorry you’re having to deal with the problems, symptoms, and pain from Erythromelalgia. I hope you get some helpful news soon.
My granddaughter’s vitiligo started last year and months later she was also diagnosed with juvenile Dermatomyositis, a rare autoimmune disease. The cause is unknown but is often triggered by a viral infection - there is a list of potential viruses that are associated with this but she had recently had a coxsackie virus and also COVID within that past year.
Wishing you the best!

Sounds awful.
I have the gamut of autoimmune symptoms, but luckily got diagnosed with MS. They have research and medication for MS.
The symptoms you describe I also have with MS.
They are thinking that there's a mechanism if the immune system that is thinking it's attacking the mono virus, but actually is attacking myelin. Please note, these proteins in myelin are similar to other cellular structures on other cells as well. There's glandular and mobility and swallowing issues, temperature issues, heat issues, no sweat, zingy nerves, skin issues, etc as part of MS too.
Funny thing, the mono virus they have shown to cause MS is present in approx 90%of the population.
The mechanism for MS could be also the mechanism for many other autoimmune diseases, with differences accounted for by environmental and genetic factors.
It's time to remove the silos from autoimmune, and open the door to better treatments

Erythromalalgia is a condition that causes burning and redness in the hands and feet. I become symptomatic when I exercise and when I sleep. Nighttime is the worst. I go to bed with cold feet and wake up a few hours later with burning red feet.

Has anyone else struggled with this condition?
Thank you.

Dear @piemonte
I need & use from my feet up thru the rest of my legs. If I use the wrong thing, my right foot is pupped up and is cold and a lost balance or less feeling on my right foot.

That’s a disease and keep my legs during the day like foot-leg closes. According to my wife gets worse, if I don’t keep these from my top legs to the bottom of my feet.

As I get older I need to help my legs/feet - daily. Physical exericinrg has been decades way before my brain-injury bicycle accident from 2012. I got a 3-bicycle thing and helps the strength of my inside muscle. But, I still need holding my legs-feet.

Thx,
Greg D @greg1956

Sorry to hear of your suffering. I haven't had erythromelalgia. But, I did have a brief bout of idiopathic peripheral neuropathy a few years ago that was quite distressing.
You don't mention any treatment(s) you may be trying. Are you getting professional care?
Again, sorry for your pain.

Thank you for your support. There are no remedies at this point. My doctor said taking aspirin can help. I’m on Eliquis so I can’t take aspirin.

Hello @piemonte, Here's another related discussion that you might find helpful:
-- Erythromelalgia treatment and autoimmune: https://connect.mayoclinic.org/discussion/erythromelalgia-treatment-and-autoimmune/

Here's a search link that lists other discussions and comments on Erythromelalgia - https://connect.mayoclinic.org/search/discussions/

I haven't been formally diagnosed but I have many symptoms. I know that sleeping in bed is hard for me too.