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How were you diagnosed?

manaleriemmanalerie Posts: 550
edited 06/11/2012 - 7:23 AM in Fibromyalgia
With so many symptoms, I wonder how anyone is ever diagnosed? I am certain that not everyone would have ALL of the listed symptoms, do they have MOST of them?

Could you share how you were diagnosed... what your symptoms were? I am interested to see the different symptoms in different people, and why/how they were diagnosed...

Amanda :D


  • My case started out as severe knee pain in my left knee, near in the medial meniscus area and on the back of my knee when I tried to bend it back or I got these very tender, extremely painful bumps all over the back of my knee. This followed a lateral meniscus tear in my left knee after I fell off a ladder. Then my hamstring muscles were so very sore...like I did a million hamstring curls without stopping.

    When I returned to work, I was still unable to bend my knee back to be able to squat properly. I kept going back to the dr. explaining that I had severe pain when I tried to bend it, and I tried doing all the exercises and that didn't work. I tried resting, ice, gentle stretches, everything. Then I got diagnosed with hamstring tendonitis and sent for PT. That did work.

    Then I hurt my back at work or somehow, but I had some BAD nerve pain, and ended up getting shots for that. I kept complaining that my knee still wasn't healed, and that something was wrong. While I was in PT for my back and my knee, the PT noticed that something was very wrong with my muscles. He wouldn't say what it was but I knew something was up too. He was doing myofacial release on my hamstrings and I was in agony. The bumps (now I know they are trigger points) were terribly painful just by lightly touching them.

    I saw the PM doc and he was almost some help by mentioning I had myofacial pain. But he didn't know what I should do about it. So I left his office crying and so upset b/c AGAIN, I wasn't being heard.

    Finally I went to my spinal specialist for a checkup, after I had researched this myofacial pain. I told the dr. that I believed I might have fibromyalgia b/c I fit most of the symptoms, and I had pain EVERYWHERE. I also was very firm that I wasn't leaving the office till he heard me out and I wasn't going anywhere until he figured out what to do.

    Little did I know that he thought I was right. He sent me to the rheumatologist and on that visit I was diagnosed. I told him I had kept a pain diary so that I could track what I did that caused the amount of pain I was in, the weather, whether I worked, WHERE the pain was, and what it felt like.

    I figured out by the diary that the pain was usually in the same places that I always complained about since my injury, and I had some newish places too--my shoulders and my elbows. So all that pain in my knee was actually one of the tender points for Fibro. I also have TMJ, IBS, depression, anxiety, insomnia, chronic ear infections, chronic bronchitis, chronic sinus infections, and the list goes on. So he diagnosed me and he said that he agreed with the dr. and me!

    I am not happy that I have it but I am certainly glad that I finally figured out that I wasn't nuts for complaining!

    Now if I could get some people I know to believe me when I say DON'T touch me, or I will scream, I'll be okay!
  • What an ordeal! I've always kinda thought in the back of my mind that I may have Fibro. But every time I look up the symptoms I think "no not me" because like you have stated... the symptoms are just brutal. I should have a doctor check the "trigger points"

    Thanks for your story,

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  • I went in hospital for surgery on my vocal chords and had to have X-Rays and MRI CT scan and other tests.Afterwards the Dr asked me if my neck/back hurt and I answered that yes it had hurt for years b/c I knew that I had arthritis in my neck,but that is when I was told about the cervicle DDD and I had never heard of it before.

    Because of it's name I thought it was a disease (lol),well I mean seriously who would'nt right? So when I came home I researched it a little but I'm not one to take things real serious unless it is something that can lead to serious health issues or death.I suppose that statement could open a can of worms,but what I mean is,I feel that OK,I can deal with the pain and other issues,but is this going to literally kill me like a cancer you know?

    Whenever I found out what it is and how it's treated I sort of let it go for months.A couple of months ago whenever my pain started to get worse I researched it a bit more and that is when I found S~H.

    I guess in a way I was lucky that I had to have the vocal chord surgery.Everything seems to work out in it's own weird way.
  • Now it seems like I'm following you around,but I was just looking at recent topics....honestly :))(
  • i was DX through a rheumy. he ran blood work from a-z plus more.
    gave me the 18 tender point check test. i had 15.
    we did a bone scan and xrays to rule out other issues.
    i also kept a log of what pain i was having , when , and how it happened.
    (personally i do not think he was happy about that, i kinda blew him away) ahahahahahaha some of us patients are smarter then them.

    mine was DX quickly
    i ended up in the ER after not being able to get out of bed for a week.
    so they also ran blood work for bug diseases etc , and DX me with myalgia. which was a huge plus.
    even on my first ck up they started me on amptriptyline which worked for sleep but not pain.
    and ultram which was a life saver at the time.
    then of course on the bad days not one thing touched me not even lortab. so would be stuck in bed with heat till it subsided.

    so yeah we all vary in our symptoms. not one fibro pt is the same.
    some worse off then others, some well it comes and goes, some live with it everyday of their life >:D< >:D< >:D< >:D< >:D<
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  • Now people will read it...lol

    Amanda-I just realized this thread was for fibro... =))

    I was going on & on about my DDD and dang vocal chords and you didn't even tell me...lol

    anyway sorry 'bout that

  • diagnosed me following a brain injury last year. My lab work was horrid and the reason for my syncopal episode was unclear..my stress hormones were through the roof...she told me I had fibromyalgia following an exam and review of 'me'. After I researched it I understood all my strange symptoms since my car wreck back in 1999, and subsequent lawsuit and stressful times since then, troubles sleeping,thinking clearly (fibro fog etc etc.) Since then even more problems have been uncovered (probably already there under the surface all along I was just too busy working myself into exhaustion trying to keep going to notice) Typical type A :(

    So..I didn't get 'officially' diagnosed until I was disabled from a lifealtering brain injury unfortunately. I'd been pushing through it for years using Ultram successfully for chronic pain in my neck and back but my prescribing doctor never believed in fibro as a diagnoses, we just called it residual pain back then.

    Unfortunately I can no longer take my Ultram as my brain cannot handle it now (too stimulating). It worked well for many years however!!

    Good luck to all here!!

    We're all a little different but share a common bond.
  • my joints does hurt but i havn't been diegnosed because the doctor does not believe me . but my toes my ankles hurt my hips hurt my shoulders and you can't even touch my skin with out me screaming. i dont know what to do anymore. i'm about ready to give up . and walk away. well at least try. but how would i excplane to my doctor that THERE IS SOMETHING WRONG. any advise?
  • I have the same thing, everything hurts and if someone touches me, it hurts. I finally went to the doctor and she is doing blood tests for arthritis and thyroid and other inflammatory things. I get the results next week. I know how you feel, and its really hard to get through a day.
  • I just read your message. I am sorry the dr. isn't listening to you. Is it possible to go to another dr. and INSIST on them paying attention to you? I did that with like 3 of them, asking constantly what was causing me so much pain. After being blown off too many times, I finally walked into my spine dr. office and told him he couldn't leave the room until he heard everything I had to say and to LOOK at the stuff I was researching to determine whether I had fibro or not. He was pretty dumbfounded that I was that bold, but I had had enough and wanted answers. Speak up for yourself. Be your own advocate. Good luck!
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