[[[[[[[[[[[ OFFICIAL diagnosis (DX) question ]]]]]]]]]]

Discussion in 'Fibromyalgia Main Forum' started by BILLCAMO, Oct 15, 2006.


    BILLCAMO New Member

    For those who have CFIDS and/or Fibro.....

    How many of us here have received a verbal or "scribbled" DX for one or both of these DD'S...from a Dr.


    Have had or do have a problem getting an "Official" written DX ?????

    Blessings ,


  2. Redwillow

    Redwillow New Member

    The first rheumatologist I saw diagnosed me with Fibromyalgia. She gave me phamplets on Fibro to read but in her official report she diagnosed me with Chronic Pain Syndrome. She said that they were the same thing but CPS would be accepted better by insurance companies if I was trying to apply for diability. She said she didn't like to use the 'f' word in any medical reports for this reason.

    However when my GP read her report he said she hadn't diagnosed me with anything because she never mentioned the work Fibromyalgia. This was very frustrating for me as he seemed to doubt what I understood her to say even though I had the pamplets she gave me which even has notations on them as to what medications and treatments she thought would help me.

    Because the first Rheumy wouldn't accept me as a patient I had to see a second Rheumatologist who was willing take me on. This doctor did use the word Fibromyalgia in her report and I remember my GP saying "I see that this doctor agrees that you do have Fibro" like he needed to see the word in writing to believe it.

    I get so tired of the doubt that I feel from most doctors about this illness. It is hard enough to struggle with this illness without the constant doubt.

    hugs Redwillow

  3. KelB

    KelB New Member

    To be honest, I had doctors and hospital consultants falling over themselves to diagnose CFS.

    At 5 months my GP diagnosed Post-Viral Syndrome, at 6 months a Goastroenterologist gave me a working diagnosis of CFS and at 7 months a Rheumatologist gave me a formal diagnosis of CFS.

    It had never even occurred to me before the GP suggested PVS - I thought I'd just had a bad run of ear/balance problems that had worn me out over previous months.
  4. hugs4evry1

    hugs4evry1 New Member

    I've had an official dx at least 3 times by 3 different doctors.

    The first was about 6 yrs ago but I didn't believe it, thought it was more CFS because I wasn't in pain...just bedridden for 9 months.

    Then a few years ago, my new doc here in Germany dx'd me, sent me to a Rheumy who also diagnosed me. Then the pain came, boy did it ever!


    Nancy B
    [This Message was Edited on 10/15/2006]
    [This Message was Edited on 10/20/2006]

    BILLCAMO New Member

    In my experience ,it seems to me that many people have had a problem getting an official written DX.

    Even though Fibro has the tender point test , neither DD has a definitive test to prove that a person has either one. Many Drs. are hesitant to DX without a test to back up their DX.

    As far as the depression aspect , I believe , that for many people , it is a "side effect" created by our DD's. How could any person feel like we feel , fight what we fight , and be limited in what we can do ...24/7/365....

    And NOT have to deal with at least some depression ?

    I think it would be very difficult for anyone not actually fighting these DD's to truely understand what we are dealing with and the challenges our DD's create.

    Blessings ,

  6. NyroFan

    NyroFan New Member


    I have five diagnosises on one script and they included fibromyalgia.

  7. woofmom

    woofmom New Member

    I haven't been diagnosed with FM or CFS. But, last March I went to an allergy doctor. I was reacting to the chemicals and fragrances in the building. He wrote on my receipt: contact dermatitis. I don't have contact dermatitis. I have MCS. Then he said there was nothing he could do for me.
  8. suz45

    suz45 New Member

    HI BIll:

    Lost my post will try again. I recently requested all my medical records from my internist and my neurologist due to moving to a new state. All my medical documents indicate a dx. of FMS and CMP with the most painful trigger points in my lower back/hip region.

    My new PCP (great doctor) and my new Chiro (great too) have copies, however all one has to do is press on my Trp's and lets see how I REACT. My chiro has been having fun I'm sure since my most recent flare has had me in his office 1-2x per week. Almost jumped off the table during one visit as my hip trigger was causing major referred pain down my leg. He did fix it though in one session and I'm now down to 1 visit every 2-3 weeks. Still wotking out the kinks.

    Hopefully my flare will continue to resolve itself...

    Good Question as many of us have probably had a very difficult time being believed.

  9. dononagin

    dononagin New Member

    Good to see you posting!

    Yes, I have an official written diagnosis. My rhumie sent a letter to my primary not only giving my diagnosis but explaining the disorder. My primary did not "believe" in it until after the letter from the rhumie and has been actually really good to me after receiving it. cfs/fms
  10. ksp56

    ksp56 Member

    You've been missed!

    I have been DX by two rheumatologists for Fibro. The first would 'only' dx. That was so helpful, NOT. I found another doctor in Indianapolis and he agreed and did help treat!

    It was written in the charts. I have copies. To me, that's as official as it gets, as far as I am concerned. If other doctor's persist in chortling, they can take it up with TWO specialists! LOL


    BILLCAMO New Member

    They were all very helpful !!!!

    The last figures I remember seeing from experts in this field said that they believed that at least 80% of the people with CFS/CFIDS were un- or misdiagnosed.

    And they feel that this figure has dropped to around 40% for people with FM/Fibro. As I recall , these stats. were mainly for North America.

    Has anyone seen or heard of more recent reports that have the same or different figures ?

    Blessings ,

  12. rockgor

    rockgor Well-Known Member

    Don't know what my records say.

    Only one doctor told me I had CFS. He was w/ Kaiser. Don't know if he wrote it in the records tho.

    Whatever we have, by any other name, its thorns are just as sharp. Would be nice tho, to get a little more cooperation from some of the medical people.

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