Connect
← Return to Want to talk to others with fibromyalgia: What symptoms do you have?
Discussion
Want to talk to others with fibromyalgia: What symptoms do you have?
Fibromyalgia | Last Active: May 13, 2022 | Replies (43)Comment receiving replies
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.
Replies to "Dear Fibro community, I am new to being unwell. I didn't know where to start, and..."
So sorry for what you’re going through. Have you had extensive lab work done? Blood and urine screen, etc? I also understand going to doctors for help only to be frustrated. Rheumatologist’s usually diagnose Fibromyalgia, but other doctors can too. You describe several symptoms that can be independent of one another. What kind of doctors have you seen?
I was diagnosed with fibromyalgia 20 years ago. It certainly has an array of symptoms that come with it! One thing I’ve learned over the years is to be careful of chalking up symptoms to my fibromyalgia diagnosis.
Rachel might have good suggestions for you. As frustrating as it can be, finding the right doctor to help you diagnose or eliminate concerns would be a good place to start. Does your primary doctor know about your symptoms? Have they referred you to any specialists?
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:>
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.
Connect
@flor2022 Hey there. I'm sorry to hear about your undefined symptom causes, and completely understand how scary, confusing and frustrating it is to not have a clear diagnoses. May I ask how long you have been experiencing the bulk of your symptoms and feeling unwell? Do you mind sharing what types of specialists you have worked with so far, and what diagnostic tests have been done?