Do You Ever Doubt Your Diagnosis?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jun 14, 2009.

  1. greatgran

    greatgran Member

    Just wondering if I am the only one that doubts their diagnosis. I live in a small town and our doctors are few and not very good . Since I am not able to travel out of town often I ususally see a PA here . I did see a retired internist, rheumy who said CFS. Later the PA I see sent me to a rheumy to rule our lupus so he dx me with fibro. Yet I do not have the tender points, nor the pain so many of you speak of.

    I do have flu like symptoms, no fever, my body aches all over, like deep to the bone aches, I stay so fatigued all the time, at times I feel I am dying. Then there are the sleep issues, the sinus and head problems , also anxiety and depression. I feel like I am one big mess and not sure what is wrong. If I do try to make myself go and do then I am in bed for days. Any activity makes me worse, not at the time but afterward. Also any fumes it be colone, cigrettes, or cleaning products I can't tolerate at all.

    The test I have had are all negative, except for the ANA and C-Reactive Protein which both are highly elevated. The only meds that have seemed to help are antibiotics, that where given to me for sinus issuses and xanax. I just feel I need more test but the doc doesn't think so.

    Seems I struggle daily with this doubt, yet don't know what to do about it.

    Thanks and God Bless,
  2. frickly

    frickly New Member

    I doubted my diagnosis for a long time because, like you, one doctor would tell me I had fibro (I also don't have the tender points) and another would tell me I had CFS. I did not feel comfortable with this diagnosis until I found a CFS specialist who did all the tests neccessary to rule out all other possibilities.

    Most doctors are unwilling to order expensive tests. However, in order to receive a diagnosis of CFS you must rule out all other possibilities. My biggest concern was MS and once we ruled that out I felt better about my diagnosis and could start to work to get better.

    Take care,
  3. Janalynn

    Janalynn New Member

    Good Morning!
    From just reading here I think many of us go through periods where we do doubt our diagnosis.
    I know I have. I don't even think I have anything else..that's the weird thing. I'm so used to the thought process of 'this is just how I am", since I lived that way for 20+ years until I was diagnosed w/fibro.

    I will then read here and think "yep, that's exactly how I feel or what I'm experiencing", so it validates that my diagnosis is correct. I'm a pretty classic Fibro case.

    If you can afford to go to another Dr. to ease your concerns, I would go, tell them the bloodwork you've had so that you don't have to go through any more expensive tests - don't tell them what others have told you - just go in for a fresh perspective.

    Maybe you only have CFS and not Fibro. I don't know how much pain is normal for CFS patients. I am afraid that possibly (from what I've read here) Dr.'s might label some people w/Fibro when they don't know what else you have. A lot also depends on how much experience that Dr. has.

    What symptoms do you have that suggest Fibro - anything besides the deep bone pain?

    I'm not doubting your diagnosis at all - just saying that some of us feel so crappy sometimes we think there must be something else going on!

    Since YOU are struggling with this doubt, I would find a Dr. - even if you have to drive a bit who can give you a 2nd opinion. That will probably make you feel better.

    I hope you start to feel somewhat better - I know your sinuses/constant infections are really horrible for you!

    Also- what do the Dr.'s say about your elevated ANA results?

    Take care,

    [This Message was Edited on 06/15/2009]
  4. greatgran

    greatgran Member

    I would love to find a CFS specialist that would accept insurance . I did check into seeing Dr Cheney or the office he was at in Charlotte, NC (since I am only about 3 hrs away) but it was so expensive and they did not accept insurance. They would give you a bill for you to file with insurance. I have medicare and they would not pay and if Medicare doesn't pay my supplement won't either. The price was just way more than I could afford.

    I have ask my doc to do certain test but he doesn't feel its necessary. I told him if he felt the way I do he would feel it necessary if nothing else just to ease my mind.

    My concern is MS as the symptoms of MS and CFS and so much alike. I have a friend who is an RN or was until she came down with MS and she doesn't think I have MS she thinks it's CFS and Fm .. I am more disabled than she but I think that has a lot to do with my anxiety/depression which she has never had.

    Thanks for your reply and so glad you found a good doc.

  5. greatgran

    greatgran Member

    Thanks for your reply, this dd is so upsetting and confusing. I have been to several doctors and some don't believe in CFS if so they don't have a clue what to do. I have been looking for
    a good doc that will accept medicare . I hate to doctor hop but looks like that is the only way.
    One will tell me one thing one the other. The fatigue , the deep bone pain , sinus issues, anxiety/depression are the only FM symptoms I can think of for now, sure there are more.

    Some say CFS and FM are the same but I disagree, I do feel mine has something to do with infection as why antibiotics help. They have no answers about my ANA except a lot of people have it and it goes higher as you age. One doc did tell me he feels I have an autoimmune disease and he thinks CFS is autoimmune. The rheumy said I might have Sjogrens but yet he did not test for it. I am more concerned about my C-Reactive Protein. but the docs don't seem to be.

    Thanks for your reply this board does help ease some of my doubts.

    God Bless,
  6. Pansygirl

    Pansygirl New Member

    Hi , I definitely was not sure about my diagnosis at first, since so many things have
    over lapping symptoms.

    But once I had more tests run to rule out different things I felt confident that
    I truly had FM.

    Interestingly enough some of my family and friends kept saying maybe it's something else ,
    not wanting to believe that it was FM.

    I feel like I'm fortunate that my doctor is a primary care doctor was/is willing to run tests
    to rule things out. The nurse would say you don't need that and I'd say just please ask
    the doctor if he will approve it and sure enough 5 minutes later she would call back~ he is writing the orders for such and such test.

    It's hard to find a good doctor but I would recommend trying to find one who would be willing
    to work with you on testing and trying different meds that might help.

    I hope you feel better.

    keep us posted

    Sending gentle hugs your way, Susan
  7. frickly

    frickly New Member

    It is difficult to find a good doctor. I got lucky as I stuck with my Rhumatologist for about a year even though he was not helping me. He did treat me with respect and did beleive there was something wrong. Finally, he told me he did not think he could help me and thought I might have CFS. He told me about an internist in my city who specializes in CFS, fibro, GWI and aids. She takes insurance and if you don't have insurance she will adjust her prices. From what I hear, these fibro clinics are very expensive and don't take insurance. I know it's not easy, it took me seven years to find this doc and I had many times that I just gave up. I did keep trying and glad I did.

    Good luck to you,
  8. greatgran

    greatgran Member

    Thanks again for your replies. What test should I ask for? I have had the usual Chem. Profile,
    which includes most lipids and blood sugar etc. had the rhem. panel, all thyroid, including the antibodies, allergy test, (not for food) had the cortisol, cannda yeast, EBV, I have had mono so the EBV was positive. Had the sleep study, Cat Scan of head and adrenals . The ANA and C-Reactive Protein, Vit D which was low. oh, also had 2 test for lyme.

    Do I need to ask for any other test ? If so what do I ask for?

    I think if I knew what to ask for then maybe I could get them just to keep me off is back.

    How are you doing and what are you symptoms and meds if you don't mind sharing your misery with me , are you all able to go and do..

    Thanks and God Bless,
  9. Cinderbug

    Cinderbug New Member

    Yes, every single day.

    Now I just found out by accident that I have high blood calcium. I will find out soon if maybe my parathyroid has been my problem. The symptoms sound like mine.

    I don't get my hopes up though, because I have been too hopeful before.

    Good luck and know you are not alone in doubting your diagnosis.

  10. mlbbarry

    mlbbarry New Member

    I was reading your posts and seeing the test you have had. You did not mention a liver biopsy unless I missed it. How are your liver enzymes. Your symptoms seem so close to mine and i have been diagnosed with a rare liver disease, autoimmune.

    Anyway I doubt my diagnosis all the time. When docs have to do every test on the planet then diagnose by ruling out everything else, it makes it tough to believe it, especially when you can't find another person on the planet with the same darn illness. Hang in there, and just deal day to day.
  11. frickly

    frickly New Member

    It's important to be checked for active EBV, lupus, Lyme, RA and MS. Lupus, Lyme, RA and MS are important to rule out and this is neccessary for a diagnosis, especially if you have symptoms that are simular to these diseases as many of us do.

    I am 80% better than before I started treatment. I have a mycoplasmal infection that I am being treated for with long term antibiotics. I also have low glutithione/ATP which I receive weekly injections for. This has made a huge difference. The bacteria caused alot of pain which the antibiotics releive. The low glutithione levels caused severe severe muscle weakness and I have improved tremendously on this treatment.

    If these doctors want to label you then they have to do the appropriate tests to do so. Unfortunatly, its all about money. Also, insurance companies don't like it when doctors start ordering a bunch of expensive tests.

    Take care,
  12. Pansygirl

    Pansygirl New Member

    The had most of the test you mentioned , the only other one that I can think of
    is for Celiac's disease (autoimmune) , I don't think I saw that on your list .

    I didn't think I had it but several friends thought I had enough of the symptoms but it came back negative.

    The lack of energy and pain everywhere in my body are my two major complaints., along with
    headaches , restless leg, reflux , memory issues and I can't remember what else at this moment.
    I take vitamins daily ~ multi .

    I also drink water 98% of the time. I do try to walk
    each day depending on how I feel ~ will determine how far I am able to go. 2 minutes ~15 minutes max. If I'm able to get in the pool then no walk for me.

    I am able to go and do errands but not everyday and if I feel like doing an errand I really limit my time to 1 or 2 short errands.

    I take elavil at night 75mg and I take tramadol up to 3/4 times a day as needed for the pain~
    and this does help with letting me function better , without it I don't do well at all.

    I am also trying to eat healthier when I can~ but I still have my chocolate tooth. :)

    It doesn't take much for me to overdo it and be stuck on the couch or bed. So I really do try to pace myself but I have to keep reminding myself each day.

    I also see a therapist that does craniosacral therapy and myofascial therapy on me once a week. So the meds, walking , vitamins , pacing and therapy are all helping in their own way.

    My daughter wanted to go to the mall last week and I said okay and then I almost
    couldn't make it back to the car.......I didn't sit and rest like I should have. :(

    I wish I had more answers and I really wish we had a cure for all these dd so we could
    all feel better.

    Enough of me, I hope you feel better and just taking it day by day is good advice like
    mlbbarry said. Enjoy the good times.

    Sorry for the rambling on.

    Gentle hugs, Susan
  13. Pansygirl

    Pansygirl New Member

    I thought of something else in related to how I feel now and how I used to feel before I got sick.

    People used to tell me that I was the energizer bunny ~ because I was always on the go.

    Well, I don't have the "energizer " part anymore. And that makes me sad .

    My pain levels and energy levels go hand in hand for the most part.
  14. frickly

    frickly New Member

    I agree that the thyroid is an important issue to have checked out. However, i do not trust these tests. In fact I don't trust alot of tests, especially the sed rate. My son's doctor told me I should have a t shirt made that says "I'm Inflammed!" and wear it to my next doctors appointment. I have heard that some people have talked their doctors into letting them try thyroid meds even though their test came back negative for thyroid problems. Many tests are just not "one size fits all". They miss alot.
  15. minkanyrose

    minkanyrose New Member

    you don't always have them they come and go and move from one tender point to the other if you have all the other symptoms then no doubt you have fibro. some day you can touche me and no problem the next day you do the same thing and fell like i have been stabbed with a knife.

    one day my neck will hurt then the next it's my legs arms or butt. never the same that's the problem with fibro why it is so hard to treat because it never stays the same from day to day.

    have a great day all.
  16. Empower

    Empower New Member

    Yep, every day

    But when I keep going from doctor to doctor, and run test after test, and nothing shows up, I have to give into the FMS and CFS

    I am very allergic like you and I think alot of that plays into it

    We are in the same boat, my ANA is slightly elevated.

    I have sinus issues all the time (although limiting dairy has helped a bit)

    Hang in there, we will find a cure!
  17. Nanie46

    Nanie46 Moderator


    Your symptoms sound suspicious for a chronic borrelia burgdorferi infection (lyme) and associated coinfections.

    I had just a FM diagnosis for 21 years and I was always looking for the cause.

    I finally discovered that the cause of all my symptoms was a chronic borrelia burgdorferi infection and bartonella.

    I also have an elevated ANA. My LLMD says that he sees that alot since it is just an inflammatory marker.

    Here's some really great info....

    There is a symptom list on pages 9-11. Info about coinfection symptoms is on pages 22-27.

    Lyme is a clinical diagnosis, based on history and symptoms. It is never, never ruled out by just a negative lab test, although 99% of Dr's make that mistake all the time.

    The very best place for testing is Igenex in CA.

    If I can help you further, feel free to leave posts for me on the lyme board.

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