Question on being diagnosed

Discussion in 'Fibromyalgia Main Forum' started by Musica, Dec 2, 2005.

  1. Musica

    Musica New Member

    How many of you have been diagnosed without an official tender point exam? I know it is supposed to be "the" way to document FM, especially for disability purposes. But I am convinced, after visits with my FM-based rheumy, that there are many ways they can determine TP reactions without the full test.

    The official 18-point exam was developed for research purposes, anyway. The FM docs and we know that you can be tender in more than 18 spots, and the degree of tenderness varies!

    And, of course, what the patient says can mean a lot to a doctor who really listens. Fortunately, mine believes that what the patient says counts for 90%, at least of RA so I'm sure for FM, too.

    So...how many of you are confident in your FM diagnosis and it was given without the ACR established 18-point test?
    [This Message was Edited on 12/02/2005]
  2. dakotasweett

    dakotasweett New Member

    but am 100% sure I have FM. I have seen about 10 different doctors (including the Cleveland Clinic) and never had the tender point exam...but I have noticed through the years that I am very tender upon any level of touch on many of those points. I am glad you mentioned this because I have been recently wondering why my doctors never did this (not even at the FFC)?!?

    I'm not worried about it though- everything else points to my diagnoses.

    -Vanessa
  3. Musica

    Musica New Member

    I think I have been able to tell when my rheumy is really testing my elbows/knees versus testing for TP reactions - or both. And I KNOW (because he has said) that he watches physical movements - how I turn my head/neck, if I seem "comfortable" sitting there, how I move my arms, how I get onto the exam table, etc. Also, they can be very clever about the art of distraction! Believe me, a good rheumy can tell a lot without the actual 18-point exam!!
  4. tigger5

    tigger5 New Member

    Can anyone lead me to the technical names of these 18 points?

    I found a website the other day that pictured them and was amazed. I've been seeing my chiropractor for 10 years and those are the points that are tender every time! I'd like the info so I can talk to him about the possibility of FM.
  5. Musica

    Musica New Member

    I'm not sure if the message is too long or the board is having a problem - or it will show up 5 times! But I am having trouble getting the post to post.
  6. millennia

    millennia New Member

    I also wasn't given a tenderpoints test. Not by the doctor who diagnosed me. A friend who is a massage therapist and works with a lot of fibro patients gave me one after my diagnosis. I'm not sure how they can tell, is the pain supposed to be different from the normal, excruciating pain I have when people touch me in other spots?
  7. rbecca47

    rbecca47 New Member

    My doc did every test in the book, from mri's, cat scans, x-rays, ekg's, egg's, blood work, and everything in between. she then had the OD doctor in her office try manipulations on neck, shoulders and spine. He did trigger point test in all areas. they discussed and when i went back to her the next week. She said i had FM. and started phyiscal therapy. I know have a tens unit helps some. but lately that doesn't even help. I am very confident that my doc ruled out every thing first. So i do beleave her diagnoses is correct.
    becca
  8. dononagin

    dononagin New Member

    did the test.. I had all 18 +..
  9. Musica

    Musica New Member

    Voiceteacher, it should be easy to give, since it shouldn't be hard for docs to know where the muscle insertion points are! However, it does take some skill to give it as it should be, to know what 4kg of pressure is. Still, even without following it to the T, it seems like you and docs should be able to get a pretty good idea...

    kat-e, I didn't think you were abrupt at all. It was a very interesting post! You took the average 7 years for a diagnosis, it must have been frustrating! You raise a good point, though, and I imagine compassionate rheumies must be sensitive to what a stigma they place on people. I have been told mine is very logical and methodical in his approach, but I have seen that he is compassionate, too. He is much more gentle when I am highly uncomfortable, and he has said that the most difficult thing for him during training was work with children with RA.

    It does bother me a little that you had one or more docs who had to see a high RF before diagnosing you with RA! I know many are like that, but you would think they would ALL know by now that there is such thing as seronegative RA.

    It is interesting that you mention insurance, kat-e. I looked into long term disability and was told that no underwriter would want to give me a quote without having an answer for my continuing pain since the RA is controlled. Of course, I probably wouldn't be able to afford it, anyway, with multiple conditions, even though they are being treated. So, it probably wouldn't be worth pushing for a dx just so I could have disability insurance quoted! I probably should be quite thankful that my rheumy is expert enough to know what directions to send me in without pinning the diagnosis on me just because he specializes in it. Still, I am rather curious about how a TP would turn out... It's interesting to have heard that a FM-experienced massage therapist would know how.

    Becca, what did or does a physical therapist do for you? Modalities to help you feel better, showing you gentle exercises? I think it is good for both doctor and patient that other things be ruled out first, rather than jumping to a diagnosis, but it can be hard to have patience with the process!
  10. CanBrit

    CanBrit Member

    My rheumatologist did the 18 point test. I had sixteen positive as well as other areas with pain. The next time I saw him, all 18 were active.

    The diagnosis was also based on negative blood test results, bone scans, etc. It was also based on other common FM symptoms and co-existing conditions.

    Regards,

    Eileen


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