Erythromelalgia

I have Secondary Erythromelalgia due to MS. I am desperate for sleep. I struggle to fall asleep and can’t tolerate the burning if the room is dark and silent! I have tried everything I can think of - relaxation technique, reading, audio books, music, tv on. Some nights I am awake all night. If I fall asleep I wake after two hours and the whole process starts again. Eventually I give up and go downstairs and start my day - often at 4.30am. I would be so grateful for any suggestions!
#Erythromelalgia #MultipleSclerosis #Insomnia #ChronicPain

As I’ve posted before I am currently awaiting blood test results to try to understand what’s happening to me. Please, if you have any input on this I’d love to hear. Chronic full body pain for 24 years. Told FIBRO. Which I believed especially after having my 1st flare immediately after a knee replacement. I just had my second and much more severe flare after leaving my job of 10 years and having an emotional reaction to it. Sounds just like FIBRO right. Well I’m on week 4. The lingering affects are full body stiffness pain. I have swelling and stiffness in my fingers and have been diagnosed with Erythromelalgia which will have an underlying cause diagnosis. THATS what I’m worried about. FIBRO has never affected me this way. The flare caused many new severe symptoms and I don’t know if they will subside or if this is the me. Looking for validation that allllll this could be FIBRO and maybe not anything worse (blood or bone marrow cancers/lupus/Polymelalgia/Myotosis etc.).
THEN. In the condition I’m in and I don’t have ANY follow ups til January. That’s unacceptable!!!!! I feel like I’m going nuts!!!!
Thx in advance!!!!!

Hi everyone! I am new here. Just diagnosed. I’m understanding that this EM disorder is untreatable and progressive it’s affecting my lower legs ankles and feet. Extremely swollen but no pain. YET. I’ve been in a FIBRO flare for 2 weeks when the EM kicked in. I also understand that it is very rare. I’m hoping to find people here who may have this as well. I have so many questions.
So now I wait for the bloodwork results. Waiting and wondering which devastating condition is causing this. They all seem to be horrible.
Please reach out to me if you have EM or just know about it. Thanks!!!
# Rare Disorders

I knew I had FIBRO but was not expecting the diagnosis of EM. DR looking for cause of EM now. I’m waiting on bloodwork results. I gotta say I’m anxious and worried about the results. The list of possible causes are a bit scary.
I’d love to chat with someone who has both these conditions. There’s not a whole lot of info on line that I can find. Some but not much
I started with a FIBRO flare 3 weeks ago and then about a week ago the EM Set in.
I think I just need to talk with someone who may have a similar experience to mine.

Hi, my name is ImaginativeOwl671. I'm here because I have been looking at the signs and symptoms of Erythromelalgia and I think I have found what has been my problem for years now. Anyone else here suffer with this?

#MightyTogether

Hi! I am 18, and I have had ME/CFS for 3 years, and Erythromelagia for 1/2? years. I very much suspect hEDS or HSD, as I have a lot of symptoms consistent with connective tissue stuff. My skin is quite stretchy, the skin above my eyelids is quite thin you can see all the veins, I have subluxations, I often can’t get my joints to “sit right” and I have all sorts of “party tricks” with hypermobile knees, shoulders, fingers, wrists, ankles, toes, and my neck range of motion is so insane it looks (AND FEELS) like it’s gonna fall off my shoulders (is that craniocevical instability? Who knows!). There is also, naturally, the fact I’m in fluctuating levels of pain every minute of every day, plus orthostatic intolerance :) My joints have deteriorated in the last couple years, with the subluxations being new. So my question is basically is this smth I should go to the doctor with and be like I think I have this, or am I going to look silly. You guys probably know more about this than my doctors anyway haha. If im gonna be medically gaslit I want to at least be confident I’m right! Thoughts are appreciated on this- Tysm!

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #Erythromelalgia #EhlersDanlosSyndrome