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RARE CONDITION-ERYTHROMELALGIA-WITH FIBRO-NEED UNDERLYING CAUSE
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.
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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!
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1 ReactionSounds 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
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