New here...your thoughts PLEASE

Discussion in 'Fibromyalgia Main Forum' started by Wingingit, Sep 24, 2002.

  1. Wingingit

    Wingingit New Member

    Hello Everyone
    I'm new to this board and am thrilled to have found you!
    I have lived with chronic debilitating pain for over 2 years and am still struggling for a diagnosis and validation from physicians.
    What has been confirmed so far is:
    IBS, long thoracic nerve palsy and scapular winging, frozen shoulder, and spinal stenosis.
    After physiotherapy for FS and what therapist refered to as a "1st rib adjustment" to my neck, I have been suffering with extreme fatigue and upper extremity weakness, constant shoulder and neck pain, sore points which come and go in various parts of my body, migraine headaches,crawly feelings(especially on my face and scalp), dry eyes, insomnia, pressure in my ears...the list goes on...
    Each time I mention a new symptom my doctor looks at me like I have 2 heads and snaps something like "when did THIS start!".
    I have read that whiplash and other cervical trauma can bring about Fibromyalgia, but when I showed my doctor the information he just sluffed it off, pressed in a few places around my neck and back asking if they hurt, and then said I don't have FMS because I don't have the specified painful spots. When I asked if he'd like me to show him where the painful places are...he said...hmmm...no...I believe you and upped my antidepressants.

    I have two questions that I desperately hope someone can answer

    Is it absolutely essential that the "tender points" be in the specified pattern for a diagnosis of FMS?
    Has anyone here ever developed FMS as a result of frozen shoulder or neck trauma?
    How do I get my doctor to take my pain seriously (short of beating him with a baseball bat)
    Oops...that's 3

    Any thoughts would be appreciated.
    Thanks in advance








  2. Wingingit

    Wingingit New Member

    Hello Everyone
    I'm new to this board and am thrilled to have found you!
    I have lived with chronic debilitating pain for over 2 years and am still struggling for a diagnosis and validation from physicians.
    What has been confirmed so far is:
    IBS, long thoracic nerve palsy and scapular winging, frozen shoulder, and spinal stenosis.
    After physiotherapy for FS and what therapist refered to as a "1st rib adjustment" to my neck, I have been suffering with extreme fatigue and upper extremity weakness, constant shoulder and neck pain, sore points which come and go in various parts of my body, migraine headaches,crawly feelings(especially on my face and scalp), dry eyes, insomnia, pressure in my ears...the list goes on...
    Each time I mention a new symptom my doctor looks at me like I have 2 heads and snaps something like "when did THIS start!".
    I have read that whiplash and other cervical trauma can bring about Fibromyalgia, but when I showed my doctor the information he just sluffed it off, pressed in a few places around my neck and back asking if they hurt, and then said I don't have FMS because I don't have the specified painful spots. When I asked if he'd like me to show him where the painful places are...he said...hmmm...no...I believe you and upped my antidepressants.

    I have two questions that I desperately hope someone can answer

    Is it absolutely essential that the "tender points" be in the specified pattern for a diagnosis of FMS?
    Has anyone here ever developed FMS as a result of frozen shoulder or neck trauma?
    How do I get my doctor to take my pain seriously (short of beating him with a baseball bat)
    Oops...that's 3

    Any thoughts would be appreciated.
    Thanks in advance








  3. garyandkim

    garyandkim New Member

    flair and started again on and off for a couple weeks again and wanted to say this is the best site we have found and welcome. Sorry, I wish I had the energy to say more, but, the others will be here soon.

    Welcome, Kim and Gary we have FMS and CFS and back problems etc...
  4. diggity

    diggity New Member

    I probably won't be of much help to you as I am hitting the same brick walls that you are. I am relatively new to all of this as well. My story is that I had surgery last year. I had been having loads of problems with perimenopause at a very early age. I bled profusely EVERY DAY for a year and a half before they ever decided what to do about it. I couldn't stand up from a sitting or laying position without have a heavy towel to keep from puddling at my feet. They finally did a hysterectomy. I was told by many many women that if they knew they would feel that much better after the surgery that they would have had it done years before. I expected to come out of the surgery a new woman. I didn't! First of all, the doc told us it would last 45 minutes including recovery, but when he got in there (I had to be opened up) and found all that needed to be done, it took 6 hours. The bleeding stopped but I never felt better. I kept waiting for the new me, but I kept feeling worse. I kept saying somethings wrong but I don't know what. No one really believed me, but I KNEW that something wasn't right. It got progressively worse until I finally found a doctor that my sisters friend recommended. He diagnosed fibro, CFS, and sjogrens syndrome. He prescribed Celebrex (worthless), and Mobic (again worthless to me). That is the story up to now, I am presently in physical therapy and hoping for the best, but I have decided that going to the doctor for this ailment is a waste of time and money. Unless and until I find a doctor that is willing to try more than throwing the same old tired prescription at it, I think I will be trying to figure out what is going on for myself. I have learned a great deal from this site and will continue to research. Maybe together we can all come up with something that will be beneficial for all of us. As to your tender points; I had already diagnosed myself with FMS BEFORE I went to the doctor. In researching my symptoms and talking to friends I already knew what was going on. If you KNOW that you have FMS and need your doc to confirm it, maybe you can just tell him what he wants to hear to get you diagnosis. I fully believe that those of us who have this disease know far more about it than the doctors anyway. :eek:)
  5. Mikie

    Mikie Moderator

    It sounds to me like you need to be looking for a new doc. Most of the things you describe are symptoms of FMS. The tender spots were arbitrarily adopted in order to give rheumies something to go by. We needn't have all of them and we can have others in other areas. They can become tender and then less tender. It is important to get a diagnosis and also to have other illnesses which mimic ours ruled out. Our diagnoses are diagnoses of exclusion.

    Upping your antidepressants will likely have no long-term effect on FMS and the side effects of antidepressants can be dangerous. Docs often resort to antidepressants when they just aren't knowledgeable enough of our illnesses to be able to treat them. Finding someone who understands our ilnesses is hard to do, but these docs do exist. Call your hospital or referral service and ask. I just attended a seminar on FMS at our local hospital and found an excellent doc who did the presentation. I may ask my PCP if I can see him instead of my rheumy.

    Good luck.

    Love, Mikie
  6. Wingingit

    Wingingit New Member

    Thanks so much for the warm welcome

    Isn't it incredible that we have to put up with egotistical doctors who refuse to do a little research or think "outside of the box" for the sake of possibly helping us(or even learning something?)... and we pay the price for their arrogance in PAIN.
    I can see by reading the posts that this is a Universal problem and it's HUGE.
    We in Canada are suppposed to have one of the best Health Care systems in the world...I shudder to think of what people in some of the "less fortunate" Countries are going through.
    Here, we do not have the option of "choosing" a physician and in my hometown and many in Ontario there is a doctor crisis. Many citizens including seniors and young children do not have a family physician and must go to the ER of the local hospital for care. Getting an MRI or an appointment with a specialist requires an incredibly long wait as does getting into a pain clinic...something's wrong with this picture.
    I am finally on a waiting list for a pain clinic in Toronto, but I am being told it will be another few months(but what's 3 months when I've been in pain for 2 years right?)
    I hope that when I do finally get in, the doctors there will be able to give me a diagnosis and some direction...not more of the run around I've gotten up to now.
    I will keep you up to date
    Thanks for your support
  7. alomasp

    alomasp New Member

    i myself am new to board & fms,know exactly how you feel.my primary dr. thought i was looney, sent me to a physc.,then after trial & error on all kinds of meds.,suspected fibro,which in turn sent me to a rheumy,did tests,negative mostly, only had to touch a couple of tender points,(almost slapped him,sorry doc.)didn't take him long to dx. fms. Now have 3 drs.insurance company's love me i bet!
    seriously have you been to a rheumy,yet??tender points are not hard for them to find. good luck,God bless!
    alomasp