Difficulty getting diagnosis

Discussion in 'Fibromyalgia Main Forum' started by sleepless_in_tx, Feb 18, 2006.

  1. sleepless_in_tx

    sleepless_in_tx New Member

    I've had symptoms for close to 7 years now..constant fatigue, difficulty sleeping, aching joints, clouded thinking, ect. First I was told I had CFS, I've also been diagnosed with IBS, Intercycstial cycstitis (sp?) and acid reflux. I think these are somehow connected to each other. I was referred to a rheumatologist to find out if I had RA or some other type of arthritis and all the test came back normal. I thought it could be fibromyalgia, but there was no pain when pressure was put on the tender points. Could it still be fibro? I'm very frustrated with the doctors treating me like it's all in my head. I just wish I could find out what's wrong with me.
    [This Message was Edited on 02/18/2006]
  2. Pianowoman

    Pianowoman New Member

    Your story is so typical for those of us with FM/CFS. Finding a Doctor who understands these diseases is not easy. You might click on the Doctor Referral at the top of the page and see if there is anyone in your area. You could also make a separate post asking if anyone knows a good Doc. in your area.

    Keep reading here as well. There is loads of information that could potentially help you.

    Good Luck
    Kathy.

  3. Esperanza25

    Esperanza25 New Member

    For over 12 years I was sent to psychologist, psychiotrist and so on and on... I was very frustrated because these doctors made me feel like it was all in my head and all they could say was your depressed. "Well, who wouldn't be depressed if you're in pain and everyone around you is calling you crazy."

    I was diagnosed last year after 12 years. I was diagnosed by an oncologist because I kept on telling them about a pain on my right side, especially, never mind all the other points. The oncologist did say I have a tumor on my right pelvic bone, but also said that the tumor had nothing to do with the other pain and stated that I have fibromyalgia. I was relieved because at least I have a name and is not on my head. Like you, though, I was diagnosed with IBS, reynaud phenomenom, migraines, I have two herniated disk on my neck, two herniated disk on my lower back, TMJ and so on. So, I believe all these are part of FM.

    However, you need to keep on pushing your doctor because all they want you to do is go away and give you prescription after prescription. I have been given fiorinal, xanax, valium, diazepam, motrin 800 mg over and over again.

    I hope you find a better doctor who will listen to you, it took me a while... I kept on going and going, until someone took the time to talk to me which was the best.

    I'm sorry for what you are going through and hope you find your answer.

    Esperanza
  4. sleepless_in_tx

    sleepless_in_tx New Member

    It good to know I'm not alone. It seems like when all your bloodwork and tests come back negative the doctors don't want to be bothered with you. I even had a doctor tell me what I needed was a vacation and a massage. I asked my rhuematologist what he thought it could be since the tests were negative and he just kind of blew me off and said "it's hard to tell, we'll just treat the symptoms". Great, more pills.
    [This Message was Edited on 02/18/2006]
  5. Esperanza25

    Esperanza25 New Member

    it was test after test, after test and they are all negative that at the end you start thinking like the doctors, "that is all in your head". Well, is not, it is for real and we have to push ourselves a little to deal with this syndrome. It is not easy to live with pain but is not difficult either.

    Please try exercising a few minutes a day, even if is just 1 minute and then keep on increasing, unless, of course, it is too painful to do it.

    I'm sorry that I can't be of no help, but I understand you because I have been in the same place where doctors just look at you like you are crazy... but we are not.

    Keep on trying, don't let this syndrome take over your life, we already have too many things taking over our lives we don't need FMS to take over too.

    Everyday I push myself to get up and go to work, come home and I still have to push myself to go workout and night school. I'm not going to tell you that is easy.

    Take care and keep on trying don't listen to the doctors that think that all this is in your head.

    Esperanza
  6. sleepless_in_tx

    sleepless_in_tx New Member

    Is it possible to have fibro without having tender points?
  7. sydneysider

    sydneysider Member

    I totally understand the frustration with doctors. The way they treat us is totally unjustified. I guess they only want to deal with the easy cases, and if your problems seem complex, they treat you badly, hoping that you'll go away.

    In my case, I have found out only in the last year, that many of the symptoms I thought were FM, were actually cervical, and vestibular problems. I still believe I have fibro, however, as I have the typical cognitive problems.

    This is why I think it is important to question if each symptom is cfs/fm, or actually something else (as I see you are doing).

    If you have no tender points, I think it is unlikely that you have FM (only my opinion, others might disagree), however it may be possible that you weren't tested properly.

    I've found that the acuracy of tests is always a factor that needs to be considered.

    I've found that it is fairly typical that people with cfs start out with a bad flu like illness that they never really recover from, and FM seems to start from severe stress, or physical trauma.

    In regards to the symptoms you mention, I think that some people are prone to cystitus, I know of several 'normals' with this problem. A friend of mine was told recently by a good gastroenterologist, that it is important to take cranberry pills ALL THE TIME to avoid attacks. In regards to IBS, this could be caused by food intolerances, allergies, parasites(tests can be very unreliable), or other problems.

    I question aching joints as a typical FM symptom(although I'm sure others will disagree). Makes me wonder if you've looked into the possibility of Lyme disease.

    None of this is easy. My best advise is to stay strong, don't be bullied by doctors, and keep coming back here for more advise on all your symptoms. The people here have lots of info, experience, and of course understanding.

  8. ckzim

    ckzim New Member

    But each time I have to find a new doctor, that's the first thing they check for is those tender pts. I get so upset with them for doing that, cause it hurts! Not all of them have to be flard at one time, let's pray not all of them are flard at one time! I beleive they might use that as a "standard guide" to diagnoising as Fibro. I think, if my memory will kick in...it's like 10 or something that has to be flared? There's lots of stuff out there you can check to see exactly how many. With me, some of the pts are worse than others, so I don't respond as much to that touch, as to when they hit the really flared ones.
    Hope this helped alittle anyway..I really don't know if you HAVE to have them...but if the doctor is using only those tender points to diagnois you, which he shouldn't be, he won't diagnoise Fibro without them. Why I don't know?
    When I first got diagnoised(sp?) I didn't even know what Fibro was! I had been running around wondering what was wrong with me.
    Don't give up, keep trying other doctors.
    The one who tested your tp's might not of done a good job.
    The doc I'm with now, did mine tps and said..Hummm not all there. I've had Fibro now going on 5 yrs.( for cryin out loud) She just did a sweep type thing over my back..I couldn't feel her hand at all. lol...I was numb from the pain pill I took before hand...lol... It really depends how much they are paying attention when they test those tps. Other doctors I've seen press so hard on them that I wince and jump..like back off man!
    So hang in there... keep at it. If all fails, simply ask the doctor do they all need to be there? See what he/she says.
  9. kellyann

    kellyann New Member

    Hi,
    I have had test after test ran for many years never really finding the cause of my pain. Finally I made up my mind to try and do something about it. I saw an ad about a fibromyalgia/chronic fatigue center. I started to go and was tested and tested for all sorts of things. It turned out that I have Lyme Disease. I had never even considered Lyme, even though I live out in the country, have dogs, and horses. Anyway, once I started reading all the symptoms of Lyme, I started to cry, because it all fit me exactly. The symptoms of FM and Lyme are a lot alike. I am being treated now with antibiotics and it is rough, but there is hope for a cure. Please go get tested and make sure the doctor requests a western blot test done by the lab.
    Take Care!
    Kellyann
  10. sleepless_in_tx

    sleepless_in_tx New Member

    Thanks for the advice. I had thought about Lyme disease, but it's caused by deer ticks, isn't it? I'm nowhere near the country and never go out in the woods, ect. It couldn't hurt to have the doctor check though.