Need some quick opinions by Tues am!!

Discussion in 'Fibromyalgia Main Forum' started by Musica, Nov 28, 2005.

  1. Musica

    Musica New Member

    Rheumy and I have been kind of dancing around a FM diagnosis for about the last year. It has only been mentioned by either one of us a few times. The last was a couple of months ago when he said "It is possible you have fibromyalgia. I think so."

    He has done a few quick tests at a few tender point locations now and again. Mainly along my shoulders and at the elbow and knee TP's. He has not done an official TP exam. I know he does not consider them necessary for a diagnosis, since they were established for research purposes. I guess it only really matters for disability purposes now? He seems to have many different ways of subtly or more overtly testing TP's, given that he does specialize in FM. The last couple of exams, I have definitely been more reactive. Oct/Nov were not good months for me last year, either.

    How hard would you push for an official TP test or a definite yes or no to FM? (At least as far as rheumies will go, and mine specializes in FM.) I do think he has been trying to rule out everything else. The thing is, he may bring it up one visit, then if I ask the next he doesn't seem to want to discuss it. I certainly don't want to seem like I am trying to diagnose myself and get him to agree! Or worse, to make him think that any sensitive spots I have are psychosomatic or subconsciously derived.

    How have you tread that fine line of trying to find out if you have FM without seeming like you're pushing for it? Do I continue waiting and see what he decides to do from visit to visit?

    [This Message was Edited on 11/28/2005]
  2. rigby

    rigby New Member

    Has he ruled out other things since he is a rheumy you must be seeing him for some thing. He needs to do the TP so it can be in your medical chart the correct all points. So ask him if he will do the test and note it in the chart for your peace of mind. Sharon
  3. Musica

    Musica New Member

    I have been seeing rheumy for RA, although he is a FM specialist. He has been trying to rule out other things. In about the past year, I have had a full body bone scan, head/cervical MRI with flexion/extension and neuro eval.
  4. phoebe1

    phoebe1 New Member

    I would straight out ask him for a diagnosis, but don't mention FM so it doesn't look like you are putting the word in his mouth, let him make the diagnosis on his own.
    Then if he says it is FM I would ask him to first rule out Lyme, Candida and chronic mycoplasma infection.
    And I wouldn't let him UHM and AAHH, don't leave without a straight answer, if you don't have a diagnosis how can you be treated.
    Let us know how it goes.

  5. smiffy79

    smiffy79 New Member

    i wouldnt push out on the tp test, my rhuemy didnt even touch me.
    i went in spoke to me and before my butt hit the seat he siad you have fibromyalgia!

    after that he refuses to see you, he says fm cant be treated and so sees it as a waste of his time. git!

    are you in the uk?

    life has changed for me for the better since my dx but thats because i always thought i was plain stupid. i always saw myself as a misfit because i knew i was different but didnt know why.

    goodluck musica
  6. puppyfreak

    puppyfreak New Member

    I agree with Phoebe - you need the correct diagnosis in order to get the correct treatment. That's the bottom line and I think it's OK to be up front or even blunt about requesting a diagnosis.
    I'm wondering a couple of things about your Doc...
    Maybe he doesn't want you to be 'bound' by a particular diagnosis, like maybe he thinks you would expect certain treatments/pain meds/etc. if he gave you the diagnosis of FMS?
    Maybe he suspects something else and is waiting for other symptoms to manifest themselves before making a definitive diagnosis?
    The Rheumy who diagnosed me almost 4 years ago was kind of wishy-washy about the Fibro even though, like yours, he was always poking at my tender points. And he never did adequately treat my pain.
    Just wondering if those might be some issues...?

  7. kch64

    kch64 New Member

    Just ask him point blank. Say do i have it or not? Make him commit to a diagnosis.

    I've had problems for years, been through all kinds of tests. I had to persue diagnosis on my own through going to a Rheumatologist. I typed up all of my symptoms, and told him my story. He didn't do the exact trigger point (18 point) test, but he felt around my neck and hips. Then he said based on my symptoms, yes, he thought I had it with certainty. He's considered one of the top doctors in my area.

    As far as treatment, all of us are different. I don't take any medications right now. I'm very sensitive to them. I just use supplements.

  8. lovethesun

    lovethesun New Member

    I got disability on the first try with strictly fibro.

    This is a disease where everything has to be ruled out before they can say fibromyalgia.

    I think your rheumy is doing you a favor.I know it's frustrating.A neurologist diagnosed mine.I think my doctor thought it was fibro and thought that would be the outcome.Anyway.just my opinion.Good luck,Linda
  9. ldbgcoleman

    ldbgcoleman New Member

    I personally feel like the FM diagnosis doesn't really matter. It is a name to put on your symptoms. I am not saying it's not real at all only that it is not what is causing the symptoms you have. Something else is underlying. Probably more than one thing. As phoebe said It could be Lymes or EBV active, or mycoplasma etc.. Try searching Stealth viruses on google. If you can find the underlying causes and treat them the symptomns will subside and may even go a way.

    It is good for hm to be cautious and not label you as smiffy said. Find a Dr who will treat you and not just your symptoms. The people who do this are the ones who are getting their lives back. Lynn
  10. millennia

    millennia New Member

    What if you push for a diagnosis and he gives you one and it is something else. Once he diagnoses you, he is going to stop looking for what is wrong with you. If he hasn't diagnosed you yet, there are probably still things he wants to rule out first.
  11. Musica

    Musica New Member

    I tried to get on this morning to get comments, but couldn't get on the board! Rather frustrating, but things went as well as they could have, anyway. I do appreciate your responses; I particularly like the "press for a diagnosis, but not specifically FM" approach. It is true, I don't want a dx just for the sake of getting one.

    Rheumy wouldn't come right out and say I have FM, but he was drawing similarities to "people with fibromyalgia". Actually, his main emphasis was on quality of sleep, which is his big thing with FM. He is the one who has done the studies with Mirapex and Ropinorole. Anyway, it did come out that I definitely feel worse the day after I clearly sleep poorly the night before (taking a long time to get to sleep, waking often). So, for him, it verified that I have another sleep disorder that needs improvement.

    I use a CPAP, but sleep doc's focus has been on using it enough to prevent strokes and heart failure. Now that I am finally settling in with it, rheumy wants me to go back to the sleep doc and have him work with me to get the number of cortical arousals down. That is still a relatively unknown part of sleep medicine, but this doc has worked with rheumy before and will explore that area where other sleep docs won't.

    I also told him of the sensitivities I have. Massages are great with a heavier pressure, NOT with a light touch! Also, I cringe to even think about how it felt to try one of those vibrating massage cushions or those pronged things you can use to massage someone's head. He said "people with FM" wouldn't like those things, either, and wasn't surprised that I couldn't abide them.

    He didn't mention a continuum, but the way he described healthy as being "here" (stretching his right arm out) and FM being "here" (left arm out), with me being somewhere in the middle, that's what he must have been talking about. I have read that FM is on a continuum, not necessarily you have it or not. I don't have IBS and a lot of other related conditions, but I do seem to have tender points to some degree and definite skin sensitivity.

    So, you guys are right! He is trying to treat an underlying condition - quality of sleep. Which, of course, has a strong interaction with FM. He says he has seen others get back to feeling normal, even those with strenuous jobs with their hands (my hands always feel crummy), with better sleep. So, it's not the diagnosis so much as treating a root cause, especially knowing what he does about sleep and FM symptoms.

    So, I didn't get definitive diagnosis, but it made perfect sense to me even though he never came out and said "yes" or "no". It's a clear an answer as I think I've ever gotten, that there is a continuum and I am somewhere along it. I guess I've suspected I have some degree of it, since I have been off and on here for the past year!

    Thanks for all your replies. They were great to read, even after the fact!

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