Fibro DX'd Without Tenderpoints

Discussion in 'Fibromyalgia Main Forum' started by pookieruth, Sep 26, 2006.

  1. pookieruth

    pookieruth New Member

    My rhuemy Dx'd fibro, even though I did not have the tenderpoint pain. I must admit she barely touched me, let alone applied any pressure. But based on my history, she said the tenderpoints are not the only "true" sign of fibro, and that I definitely have it,along with several other problems. Does this sound right? Thanks - Lee
  2. Hope4Sofia

    Hope4Sofia New Member

    Have you had any testing done to rule out other possibilities?

  3. pookieruth

    pookieruth New Member

    Thanks Sofi - I had an x-ray of left shoulder because my upper left arm hurts so badly - it was normal. I can't have an MRI due to titanium used to repair a fractured ankle years ago. My doc requested so many blood tests, it was the equivalent to giving blood!! I go next week for the results.

    Hayley - Exactly!! All of my symptoms are so right on - when I began researching fibro I couldn't believe things I've always lived with were actually symptoms of something. Even the bizarre ones, like being a "bug magnet", or having childhood "growing pains". I would have been surprised if I didn't have it. Certainly, no one is thrilled to find out they have this, but it's such a relief to know I'm not crazy after all! I'll have to check into your profile to learn more on the other related syndromes. I'm brand new to all this!

    Thank You, Lee
  4. hugs4evry1

    hugs4evry1 New Member

    I was dx without tenderpoints many years ago and I just didn't believe them.

    Fast forward a few years and the pain in the tenderpoints came...and yes, I believe them now!

    Hugs and welcome,

    Nancy B
  5. marsupialmama

    marsupialmama New Member

    I thought tender points and trigger points are two different things. Can anyone explain?
  6. Greeneyes2

    Greeneyes2 New Member

    My understanding is that tenderpoints are what are used to dx FM and trigger points what you have with CMP.

    I get to have both so it is confusing at times.

    Gentle hugs,
  7. mindbender

    mindbender New Member

    I got diagnosed without them but I sure have every other sign. I don't think in my life time, that they will ever combine all these diseases into the one. It would sure make things simpler.
  8. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    That can't be the only defining criteria, and I don't even think its a reliable one because the ones that are active can vary from day to day and even the specific time of day.

    I also believe that CFS/fm are the same disorder, but just different aspects of the symptom spectrum. You can have most symptoms of both and you have ME (the original name that encompasses all the symptoms of both CFS/FM). Or at one point in your illness can lean toward one end of the spectrum.

    I spent many years in a limbo, where my symptoms didn't clearly define either CFS or FM, because they couldn't get 11/18 tenderpoints when they tested me. It took about 5 tries to get them, but i persisted in asking to be retested because I knew.

    Here's another thing about getting tender points checked, and I'm sure it was the reason it took me so many tries to confirm enough of them for a dx. When you go to the doc, you are careful to get be as rested as you can be, you know you have to conserve energy to get there and back, so you tend to go in fairly "fresh", not the best time to test for active tenderpoints. So when I saw a rheumy, I was determined to not do that and fail the tp exam again. I rode my bike uphill to the appt., didn't take it easy at all and felt good and beaten up when I saw the specialist. 15/18 tps that day, I knew darn well they just had to get me at the right(wrong) time. But other doc's had let me know that was probably the case too.

  9. tandy

    tandy New Member

    I believe its true.

    I was DX only having 2 or 3 spots that hurt like a bruise.(without bruising)

    years later I developed more and more.
    Now I think I have MORE then your suppose to have. If that makes sense. ???
    It took me 2 yrs of complaining to 5 different drs.
    that 'somethings not right' to get a diagnoses.
    the first 10 visits to my primary dr. he would just tell me that I needed more sleep/rest and to take it easy for a week. (yea right!)
    I wish sleep would take this away!
    I'm tired again 2 hrs after I sleep a full night.
    Its not easy being us. :)

    Nice meeting you,
  10. twitcher

    twitcher New Member

    checking the tender points either. It just left me with more questions and lack of faith in the doctor. So I went to a well-known fibro specialist and he checked me and said I had 14/18 of the tender points. He said I have "classic fibromyalgia". I believe 11 of the 18 tender points is required diagnostic criteria. Do they diagnose people with things like diabetes without checking their blood sugars? I think not. I would do some research and get another opinion.
  11. pookieruth

    pookieruth New Member

    I have a ton of questions for her!!! I just got an EOB from my insurance for a lyme disease test - that's the first I heard about it!

    Anyway, thanks for the support - I'll keep you posted.