I feel like I go from Dr to Dr trying to find just one that may have a protocol for EM! Most haven’t even heard of it. It’s been over 20 years and still no help! I feel like I’m loosing the game. #canuseeme
#Erythromelalgia
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Hi, my name is ShadowsMomma. I'm here because I believe I have erythromelalgia. My symptoms started slowly....hands and feet got slightly red, tingling and a tad swollen, especially after exercise. Now it's spread to my ears. My ears are the worst. They feel like someone poured gas on them and lit a match. Every day. Evenings are the worst for some reason. But the last few days the flares are happening earlier and earlier and I'm having multiple flares a day. I'm beyond depressed. The doctors are no help.
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I’m here with a new account as my old one got deleted.
I am looking to connect with others who experience chronic pain and who ‘get it’. I have had multiple sclerosis since 2000 and also have erythromelalgia. Always looking for the joys in life!
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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
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Trying to figure out how to get my friends “on board” with my journey.I try to update them so they understand but I feel like they’re sick of hearing it. I’m feeling very alone and scared right now. After 24 years of chronic pain I just had a severe flare which has left me with debilitating issues as well as a diagnosis of Erythromelalgia. Another severe pain condition. But this one’s rare and will come with an underlying condition. Waiting for lots of test results now. No one in my life truly understands what I go through. There’s not a day that I’m not in pain somewhere.
This is why I’m joining these groups. Just need people who truly understand the daily struggles. Happy to be here!!
💜
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Anyone else here been diagnosed with EM? EM is rare however I’m trying to see if people with FIBRO have EM tendencies. I’ve recently had a severe flare of FIBRO which left me with lingering disabilities AND EM.
OTHER THEN EM, does everyone sweat terribly?? Swell? Stiff swollen fingers?? I’m starting to question if it truly is FIBRO or something else. EM will come with an underlying cause. Being tested now. Ahhhhh life in pain, isn’t it awesome to look forward THAT!!! (Sorry, feeling a little angry this morning). Or maybe sorry for myself. Idk.
Thx for any input.
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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!!!!!
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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
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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.
2 reactions Does anyone have any experience of erythromelalgia? How do you deal with the pain? #MultipleSclerosis #ChronicPain
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