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Want to talk to others with fibromyalgia: What symptoms do you have?

Posted by ChelleR @cheller, Apr 23, 2012

hello everyone i'm new at this but was wanting to talk to other people about fibromyalgia and the symptoms that other people have

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

ksml88 | @ksml88 | May 12, 2022
In reply to @flor2022 "Dear Fibro community, I am new to being unwell. I didn't know where to start, and..." + (show)
@flor2022

Dear Fibro community, I am new to being unwell. I didn't know where to start, and still don't have a diagnosis. I have had burning skin level pain, stopped sweating appropriately, then the muscular stuff-i began twitching and spasms, then it became pain (like my muscles feel and weakness), and I have joint issues, and there seems to be atrophy. I am most concerned about my facial/cranial weakness. I cannot flex/clench my jaw. And my tongue is shorter when I try to stick it out (I know this because I have dumb pics with my toddlers sticking my tongue out down my chin, and now it is barely sticking out past my lips). I can't get a doctor to tell me whether this could be benign (as in fibro, or CFS, or FND). They simply say they don't see clinical signs of weakness. So I figured I would come to the community to ask. Obviously I am concerned for worse things (like ALS, Muscular Dystrophy), but would be infinitely happy not to have these things. Thank you.

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I am so sorry for what you are going through! I know getting someone to listen to you about your symptoms is the hardest part. Can you get your doctor to refer you to a neurologist ?
Not trying to tell you what you might have, but I have a friend with MS and you have a lot of the same symptoms. Of course there are many great treatments for it and she was diagnosed with it 10 years ago and lives a pretty active life:)
I wish you luck getting to the right doctor who will really listen to you !
Hugs:>

REPLY
debkl | @debkl | May 12, 2022
In reply to @flor2022 "Dear Fibro community, I am new to being unwell. I didn't know where to start, and..." + (show)
@flor2022

Dear Fibro community, I am new to being unwell. I didn't know where to start, and still don't have a diagnosis. I have had burning skin level pain, stopped sweating appropriately, then the muscular stuff-i began twitching and spasms, then it became pain (like my muscles feel and weakness), and I have joint issues, and there seems to be atrophy. I am most concerned about my facial/cranial weakness. I cannot flex/clench my jaw. And my tongue is shorter when I try to stick it out (I know this because I have dumb pics with my toddlers sticking my tongue out down my chin, and now it is barely sticking out past my lips). I can't get a doctor to tell me whether this could be benign (as in fibro, or CFS, or FND). They simply say they don't see clinical signs of weakness. So I figured I would come to the community to ask. Obviously I am concerned for worse things (like ALS, Muscular Dystrophy), but would be infinitely happy not to have these things. Thank you.

Jump to this post

Hi Flor, were you checked for ankyloglossia, or tongue-tie? It can affect facial, jaw, and neck muscles.

I was diagnosed with fibromylagia in January 2022 and it turned out to be wrong. It was difficult convincing many doctors to do a follow-up cervical spine MRI but after having EMG/NCV studies which showed signs of severe nerve damage and stenosis, it was done. I have severe stenosis bilaterally at many levels. Many other symptoms were chalked up to FM and went untreated. So now I play catch-up again, physically and financially. Keep looking for answers.

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daliea | @daliea | May 13, 2022

I was diagnosed with fibromyalgia about thirty years ago and I managed to do all the things that I had always done. The past two years have been torture following a respiratory virus in mid February 2020. I am under going testing to see if it’s something other than fibromyalgia. I am scheduled for a Medial Branch Block in two weeks. While I have been surfing the net I came across an article that may be of interest on fibromyalgia about new treatments for fibromyalgia.
integrativepaininstitute.com

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