How many doctors did you have to see before a diagnosis?

Discussion in 'Fibromyalgia Main Forum' started by Krackitty, Jan 16, 2007.

  1. Krackitty

    Krackitty New Member

    For the past year and a half I've been from doctor to doctor (also moving state to state), and none of them can give me an answer.
    I just recently heard about FM, and after reading EXTENSIVELY, I suspected that that is what's wrong with me.
    For those of you that have been diagnosed, are there any of you whose main concern is the fatigue and not the pain? My pain is rather mild most of the time, though it does flare up and become more severe occasionally. The rheumatologist I recently saw told me it isn't FM if my main concern is the fatigue. I told him that I felt that if I could gain more energy, then the pain would be easier to deal with. I only reacted to two of the "tender points" he pushed that day, but on other days I find many more.
    He told me he doesn't believe in CFS. He prescribed exercise (as if I hadn't been trying that for at least two years).

    I'm so frustrated right now. I've been to two internists, ,a sleep specialist (had a sleep study), even asked my gynecologist about it,and now this rheumatologist. The only thing that's helped (in a small measure) is taking trazodone at bed time to help me get deeper sleep. Unfortunately, when I tell a new doctor this, they just write me a scrip for more trazodone and send me on my way. I practically have trazodone coming out of my ears now. I need someone to try something new for once, but I don't know how to make a doctor understand this. I mean, I would think that bluntly stating it would do the trick, but apparently, it doesn't.
    Oh--and of course I've had the usual thyroid tests show up as normal (even though I have almost all of the hypothyroidism symptoms).

    Does anyone have any tips or suggestions for getting a doctor to listen when you try to tell them that prescribing the same thing that hasn't been working for over a year isn't what you're looking for?
    This is getting ridiculous and very expensive.
  2. pw7575

    pw7575 New Member

    Oh I saw dozens of doctors before they could rule out every illness known to man and diagnose me with CFS. That came with a bit of comfort knowing that they did thoroughly check me for other things first.

    My doctors were pretty dilligent which now I realize how lucky I was. It took me 5 or 6 months to get a diagnosis which is much better than most here. Most people say it took years. However, once I did get a diagnosis I wasn't given any information.

    They basically sent me on my way telling me that it usually lasts for 6 months to a year. Basically telling me to wait it out and that it would go away on its own.

    Well if that wasn't the worst advice EVER! Even after that the doctors kept brushing me off telling me there wasn't anything that could be done...just wait it out and I would get better.

    I had no idea that there was anything I could do about this illness. When I would type in CFS online I would just get more info saying that there wasn't really treatment for CFS. Or I would find a million "remedies" that people were selling.

    It is a good thing you have found this board! This board has BY FAR more useful information than I have ever gotten anywhere else including doctors.

    Your best bet is to do a lot of research on this board and figure out what your best course of action is. Figure out what seems to be the path you want to go and then take it. If it is tests and meds that you want then write them down and go from doctor to doctor until you find one that will do what you want.

    You have to go in there and TELL them what you want them to do and why...don't ask what you should do because they don't know and will just give you the brush off like you have been getting.

    Most doctors don't know anything about this illness so they will just try to send you off with no help. You will find that you will know more about your illness then most doctors so you will have to find a doctor who is ok with that and willing to learn and help.

    Don't give up. Keep searching for a good doctor. One that will actually diagnose you and help you.

    Good Luck to You!!!
    Pam
  3. HurtsToMove

    HurtsToMove New Member

    and ask them if they believe in CFS. If they say "No", hang up and call the next one, and keep calling until you find one that says "Yes". Phone calls are alot cheaper than office visits.

    I would never allow a doctor that doesn't believe in FM to treat me. If they don't believe in it, then they obviously haven't read any of the literature and would therefore not be aware of any new treatments.

    Once you find one, take a list of symptoms and medications you've been on, how much, and whether or not they helped. With perseverance you WILL find a great doctor who will work with you to make you more comfortable!
  4. penstemon

    penstemon New Member

    I went to 24 doctors before I was finally diagnosed with CFS. It sounds more like you have CFS from what you described. It needs to be properly diagnosed by someone who knows, since it has similarities to other illnesses too.
    I often go to www.endfatigue.com to find doctors and other professionals. Though this immunesupport and other websites have a few too. Finding a local support group can be helpful too, since sometimes they maintain a local doctor list.
  5. FOYBOYFOY

    FOYBOYFOY New Member

    i have seen 10 and had every test in the book(2 mri brain, bone marrow) you name it i had it. sick since feb 2006. ive had several dx: cfs & fm
    virus
    stress
    Lupus
    an autoimmune disease
    all from different doct, frusteration--- keep pushing til you heart and wallet says stop..GOD BLESS
  6. Krackitty

    Krackitty New Member

    Wow, thanks for all the info, everyone.
    The reason I keep getting prescribed more trazodone (I think) is that I tell them that it helps. I think the doctors don't listen to the rest of the sentence, which is: "...me feel less sleepy during the day, but I'm still physically tired and weak much of the time".
    The rheumatologist I saw two months ago told me he treats patients with FM, and had experience in diagnosing it. He apparently sticks to a very strict clinical definition of FM, and said that even though I may fit all of the criteria on some days, I wasn't fitting it that day. Great. I tried to get another appointment yesterday because I'm starting to feel too depressed about my condition to function (I can't even enjoy my good days anymore because I know what's coming once they're over), and I spend at least an hour crying about it EVERY DAY. Even though we had discussed the possibility of trying an anti-depressant two months ago, when I called and said I might need one, all he said was to keep exercising. I tried to explain that even though I was exercising as much as I could handle, I still am unable to stay awake for a whole day (not even 12 hours on bad days). It's not like I'm doing anything strenuous on those days, either. It's impossible for me to stick to a regular sleep schedule when I can't stay awake the same hours every day.
    All I was offered was to keep exercising, and I can't even get another appointment for 5 months.
    The worst part is that there aren't a lot of doctors in this area that treat FM, and even fewer that treat FM and take my insurance.
  7. pw7575

    pw7575 New Member

    Is there another doctor you can see? I wouldn't wait 5 months for an appointment. Especially if you are depressed. You need to see someone NOW!! Those feelings can get out of hand very fast. Plus feeling helpless about the situation is only going to make you feel worse.

    Once you start seeing doctors and getting help and feeling less helpless and more in control of the situation that will help your mood too I am sure.

    So don't just go into a 5 month break from it all. And DON'T go back to that same doctor! He will be a waste of your time. He has already said that he doesn't believe in CFS and won't diagnose you with FM so he won't help you. That is a dead end.

    Please find a new doctor that you can see NOW. Do plenty of research before you go and bring info with you to the appointment.

    See someone now...at least to get help with the depression.

    Where do you live? If you let us know where you are maybe someone here will be in your area and can suggest a good doctor.

    Take Care and WELCOME!!!!
    Pam
  8. Krackitty

    Krackitty New Member

    I moved to southern Alabama last summer with my boyfriend (he's at Ft.Rucker in Army flight school).
    We live in Enterprise, but I usually have to travel to Dothan for doctor's appointments.
    Anyone here take thyroid meds for sub-clinical hypothyroidism? My mother had low thyroid, and my sister takes thyroid meds as well (even though her tests show a normal level). I just don't see what else could make me sooooo cold all the time.
    The worst part is that it's very warm here in the winter more days than not, but I'm still usually freezing.
    I know I need to find a new doctor, I'm just feeling really down right now after having the wind taken out of my sails with this idiotic tail-chasing that this doctor considers "treatment".
  9. Krackitty

    Krackitty New Member

    I wouldn't really want to try it unless a doctor was really convinced that it would help me.
    When I take medicines that have it when I have a cold, I feel really nervous and I feel like I'm going to jump out of my skin.
  10. twitcher

    twitcher New Member

    I've seen several, 4 neuro's, 2 physio rehab (one is a fibro specialist), rheumy.

    I'm frustrated too. They all say something different. One said I have way too much going on to be fibro, others say it's classic fibro. All say it's not MS. One said fibro,cfs. One said "I don't have a clue" another said it's a spinal cord injury from the surgery I had in the past. It just adds to the frustration. I don't know who to believe if anyone! I really hate seeing so many doctors but if they are not helping then we have to move on. Just prescribing drugs in my opinion is not helping. They need to rule in/out every possible disease that could be going on. I would not be satisfied with what you have been told so far and would move to the next one.

    Twitcher
  11. krisfromaz

    krisfromaz New Member

    I guess I was lucky. I went to my PCP with a list of 'ills' and she referred me to a rheumatologist who ran some blood work (to rule out other stuff) and I got my diagnosis. That was in Phoenix. Since then, in Boston I had a great rheumatologist, who's wife had FM. Now in Dallas, I have an appointment to see a neurologist who has come highly recommended. Good luck. It takes time and perserverence to get through some doctor's heads! I wish you well.
  12. Krackitty

    Krackitty New Member

    What's the neurologits name?
    If worst comes to worst and I can't find a doctor out here, I'm thinking of going home to Dallas for a while and finding a doctor there.
    I just hate the thought of leaving my boyfriend and dogs here without me. His schedule is crazy and he depends on me to keep the house running (even though sometimes I'm too tired to even clean up) and take care of the dogs.
    Not that he would mind. If it meant me getting better or at least getting an answer I know he would be all for it.
  13. kriket

    kriket New Member



    on my first doctors visit with a rheumatologist.


    Kriket
  14. bigmama2

    bigmama2 New Member

    i saw about 10 different ones over a period of 12 years with primary symptom being tiredness. had lots of blood work done- all came back "normal". the drs just kept saying it was depression. I kept saying yes I have depression but I take an AD for it and it is totally managed, and my tiredness is something separate.

    Finally saw a specialist in CFS Fibro and he asked the right questions and ran the right tests and FINALLY diagnesed me w CFS. (I am lucky to not have much pain.)

    Agreat place to start is Dr Teitlebaums book "fatigued to fantastic" - very informative.

    good luck!
  15. BlackPanther

    BlackPanther New Member

    Over the past 50 (yes fifty) years I have seen approximately 23 doctors before I got a diagnosis of Fibromyalgia. This is from a rheumatologist recommended by another rheumatologist. The one that gave me the diagnosis 5 years ago HAS fibro and has studied it for 25 years. Gee, I wish I met him years ago.

    I went to 6 general practitioners (who were very sympathetic, but not very helpful), 2 allergists, 2 vascular specialists, 3 neurologists, 2 orthopedists, 1 podiatrist, 3 chiropractors, 4 mental health practitioners )2 psychiatrists, 2 therapists).

    Here is the gist of what he told me. You absolutely must get a regular good night's sleep. This is #1. He had me on Ambien, but I can't get it any more because I am presently without health insurance. (will have it in May).

    The other things he recommended were vitamins: Good Multi-vitamin, B Stress Complex, CO-Q-10 (at least 100 mg), Malic Acid with Magnesium. I also take Osteo Bi-flex for the joint/arthritis problems. I also use an herbal cream for muscle spasm pain. He also gave me some muscle relaxers to take if I feel a flare coming on.

    I can handle the pain (usually). I don't take anything stronger than Extra Strength Tylenol. I use self-hypnosis and meditation exercises for the pain. I refuse it. I will not OWN it. Pain is perceived in the brain!! Maybe Ambien would work better for you, along with tylenol at night.

    Get in touch with the rheumatology department at the closest medical teaching university. Maybe they can recommend a rheumatologist who deals especially with fibro/cfs/etc.

    Or else, just call everyone of them within a 50 mile radius of your home and ASK them.

    Good Luck. Don't give up. If you can stop working for a year, you will probably feel much better. $$ isn't as important as quality of life.
  16. Mini4Me

    Mini4Me New Member

    I saw just 3 docs before I got the diagnosis.
    First doc was an internal med specialist, second was a spine dr. and the third was the rheumatologist. It was MY suggestion to my doc that I see the rheumy.

    Best of luck and keep us posted on your progress.
    Mini
  17. Krackitty

    Krackitty New Member

    All this info is great, thanks everyone.
    The Trazodone works great for sleeping. I prefer it to Ambien, plus it's much, much cheaper. Getting a good night's sleep (or day's in some cases) isn't a problem as long as I take the Trazodone. The problem is being able to stay awake for even 12 hours so that I don't end up going to bed at 6 or 7 pm. This leads to me waking up at 4 am, then going to bed early in the afternoon the next day. It's SO HARD to keep a normal schedule. I often end up just waking and sleeping an hour earlier each night/day, going all the way around the clock. If I try to take a nap in the afternoon, I'm often so tired that I guess my body thinks it's bedtime, so when I try to wake up an hour (or two) later I feel nauseated and I absolutely can't get up.
    I wanted my doctor to at least consider giving me an anti-depressant (even though I've been refusing them for the past year) because I've been feeling so low about my condition that I can't even enjoy my good days anymore. He refuses to even try anything in addition to the Trazodone.
    Also, when I told him walk my dogs at least 4 times a week, he didn't consider it exercise (wtf??). I don't know about you guys, but going for a 30-45 minute walk when I'm having trouble getting out of bed sure seems like exercise to me. Not to mention that I live on a steep hill and some days I have to stop 5 or 6 times just to get to the top (and some days it's almost no effort at all).
    I walk, I do beginner's Yoga, and I'm not denying that it helps, but I need something else, and he's not even trying to think of any new treatment to try.
    Ugh, I'm just so frustrated right now I'd love to punch anyone in a white coat.
    I think I'm going to search the closest real city for a new doc. Even if it is 90 minutes away.
  18. Mwitherite

    Mwitherite New Member

    but if I remember all of them, 8.
    i kept getting the all in your head diagnoses. #$@#%^^%$8
  19. connieaag

    connieaag New Member

    My daughter saw 12 docs before the dx. Not fun for a kid!
  20. medievaldigger

    medievaldigger New Member

    For me, after having been to every specialist, it was an older doctor in a small town that finally figured it out. The fatigue was my biggest problem too, and for me that has also been helped immensely by Lunesta at night so that I can sleep and a half a Lortab for the pain, and that Lortab actually, on most days carries me through the next day, although especially when I am physcially exhausted, the pain is worse and then I might take a whole at night. In the end I think you just need sleep...and recognize that you have to say no to some things now, so that you can say yes to others. Management is the key for me. Hope you find someone good, soon.
    Sincerely,
    Anastacia