Totally confused!!!

Discussion in 'Fibromyalgia Main Forum' started by Wingingit, Oct 3, 2002.

  1. Wingingit

    Wingingit New Member

    Hi Everyone,
    I'm hoping maybe some of you could help me out...
    I have not as yet been diagnosed with anything other than spinal stenosis, long thoracic nerve palsy, and a frozen shoulder...and yet I seem to have many of the symptoms of Fibromyalgia:
    IBS
    sleep disturbance
    dry mouth and eyes
    pressure in my ear
    weakness in my upper extremeties
    chronic neck and shoulder pain
    sore wrists, upper arms and wrap-around rib pain
    blurring vision
    poor night vision
    extreme fatigue
    crawly feelings-especially on my face
    achy all over
    tender/sore places all over my body that wax and wane

    My doctor checked me out according to the standard 18 tender points of Fibro and said I don't have it (he sluffed me off when I asked if he wanted to know where I DO have tender points).
    I have read that Myofascial Pain has trigger points which when pressed cause referred pain to other parts of the body...I don't have that either.
    I seem to have the Fibro tender points...but in the wrong places!
    I sooooo need to know what's going on so I can get treatment. It's tough to get treatment when you don't know what your treating!
    In your experienced opinions, do FMS tender points HAVE to be only in the charted 18 locations?
    I get them in weird places...my feet...my butt...it's making me crazy being constantly told "it's not this" and "it's not that". Then what is it???
    Any thoughts?
    Nan
    Luv you guys!!
  2. Wingingit

    Wingingit New Member

    Hi Everyone,
    I'm hoping maybe some of you could help me out...
    I have not as yet been diagnosed with anything other than spinal stenosis, long thoracic nerve palsy, and a frozen shoulder...and yet I seem to have many of the symptoms of Fibromyalgia:
    IBS
    sleep disturbance
    dry mouth and eyes
    pressure in my ear
    weakness in my upper extremeties
    chronic neck and shoulder pain
    sore wrists, upper arms and wrap-around rib pain
    blurring vision
    poor night vision
    extreme fatigue
    crawly feelings-especially on my face
    achy all over
    tender/sore places all over my body that wax and wane

    My doctor checked me out according to the standard 18 tender points of Fibro and said I don't have it (he sluffed me off when I asked if he wanted to know where I DO have tender points).
    I have read that Myofascial Pain has trigger points which when pressed cause referred pain to other parts of the body...I don't have that either.
    I seem to have the Fibro tender points...but in the wrong places!
    I sooooo need to know what's going on so I can get treatment. It's tough to get treatment when you don't know what your treating!
    In your experienced opinions, do FMS tender points HAVE to be only in the charted 18 locations?
    I get them in weird places...my feet...my butt...it's making me crazy being constantly told "it's not this" and "it's not that". Then what is it???
    Any thoughts?
    Nan
    Luv you guys!!
  3. Kathryn

    Kathryn New Member

    I would ask him to refer you to a rheumatologist for testing. My understanding is that the tender points are pretty much in the same locations, but there are allowances for anatomical variations. My tender spot might be at X, while yours is 1/2 to 1 inch away, yet still be considered the same position. The person doing the testing needs to know how to do it. Some doctors have the attitude that they are all powerful and refuse to admit that they are not perfect. When you get one of those, RUN to the yellow pages, start with "A" and keep dialing until you find one that sounds like he knows what he is doing. I just found a local fibro support group that has a list of "friendly" doctors. Maybe there is such a thing in your area. You might also want to check the good doctor list on this site. There were none suitable in my town. One no longer treats fibro, and the other treats only with opiods, which I am allergic to.
    Hope you get help soon.
    Kathryn
  4. poodlegirl

    poodlegirl New Member

    I have been to many doctors over the past 6 years. I did not know waht was wrong with me. But I knew I felt horrible and it was not normal. I would get to the point I could not take it anymore and go to the doc. Ususally they would dx it as sinus infection or a cold, oh the flu is going around, pulled muscle can cause that pain, etc, etc. It is frustrating when YOU know there is something wrong, but all the tests and such are coming back okay. It is nice to have a dx. I know that sounds stupid in a way. But years of pain can get to you and to finally have a name of what is wrong! I love to watch reruns of the Golden Girls on lifetime. I have seen every eposode 6-8 times! I remember when Dorothy was sick and she went to Dr after Dr to see if they could tell her what was the matter. She was passed around and no one knew or they said she was "mental". Finally a dr dx her with CFS and sometimes just having a name of what is wrong helps. So keep trying to find a dr that does not dismiss you. Rheumatologists or infectious disease docs may be able to help you more. There are many, many symptoms or FM and FM can overlap with CFS or a myriad of other diseases. It is important that your doc do certain tests and bloodwork to rule everything else out.
  5. contessa

    contessa New Member

    I had a checkup and had few 'points'. Then I got home and realized that I'd taken my pain meds before the check-up which lessened the response. Unfortunately, in my medical chart the doc wrote much improved. Now I know that if I have an appt coming up I won't take my meds for 24 hours before going. The next appt I hurt everyplace and the same doc noted "little else available to help manage pain of illness." From this group I learned the power of having your medical notes. I'm collecting mine now and highlighting the points that help, those that hinder, and noting the omissions from the visit. On my next visit I plan on having a detailed talk with doc re: omissions and disability 'proof' notes. It took 10 years for me to get a diagnosis. You're probably on the right track. Hopefully, you'll find help quicker than I did. And don't be afraid to change doctors or see specialists if you can. It's my life, my future, and I am going to direct it - not some crank doctor that probably graduated at the bottom of his class! Keep looking and good luck.
  6. allhart

    allhart New Member

    start checking your own tender points everyday going by the chart used to dignosis fm and note the active ones also wright down everywhere you have pain this verys so much day to day thats what makes its so hard to dx