Tired and frustrated....

Discussion in 'Fibromyalgia Main Forum' started by sharleeb, Jan 16, 2006.

  1. sharleeb

    sharleeb New Member

    I've had Fibromyalgia for 28 years but only had a name for my all the pain, etc. for 4 years. At first I thought "great, I finally have a name for this disease". Then I started a journey trying to find a way to prevent the pain and all the rest of the symptoms from spilling into my life 24/7. I've been to so many doctors the past four years and still haven't found one that will really listen to me. The last specialist (specializing in Fibromyalgia) just examined me and said "yes, you have Fibromyalgia"... As if I needed him to tell me that. He wouldn't do anything for me or my pain. I walked out of his office in tears. Once again I called my family doctor and told her that the specialist that she sent me to wouldn't do anything for me. She pleaded with me to continue to search for a doctor. I'm tired of going to specialist....only to be told that they can't help. How do I find a doctor that will listen?
  2. lilac123

    lilac123 New Member

    Were you sent to a rhuematologist? That is who my family doc referred me too when I was finally diagonsed. He has been real good about my pain meds so far for about a year or so.

    I also hear alot of talk about these FCC's. I don't quite understand it all but I think they do alot more extensive testing of the blood. Not sure either if these are covered by insurance. There is a doctor referral part of this web site listed at the top of the page.

    I feel for you, it is so ridiculous to have to search for a doctor to treat us. Fibro is slowly becoming more recognized so I don't understand why these doc's won't treat us.

    I will keep you in my prayers that you find the right person soon!! Hang in there!
    Lil
  3. sharleeb

    sharleeb New Member

    Yes and pain specialists too... After searching for four years, I don't think I can walk into another doctor's office ever again......
  4. Bailey-smom

    Bailey-smom New Member

    to find someone you like and that will treat you. I searched for 7 years to find the reason I hurt like I did and the drs I went to chalked it up to a bad auto accident that I had had.

    I finally found a great internist that just went into practice and he diagnosed me with FM after only a few months and got me in to see a Neurologist that has been helping me tremendously.

    Don't give up - you have to eventually find the right dr. I live in a town of 900 people so if it is possible here it is possible anywhere! Stay positive - I understand how difficult that can be @ times.

    Thinking of you
    Kelly
  5. sharleeb

    sharleeb New Member

    I went to 19 doctors last year... My family doctor is an internist but just doesn't know much about FM. She wants me to find someone to help but I'm just so frustrated. I tried all the doctors on our insurance plan that are within 75 miles from our home... I don't have anyone else to go to.
  6. NyroFan

    NyroFan New Member

    Sharleeb:
    Maybe with the next doctor you can put all your cards on the table and tell him (or her) what you expect him to do for you. If it is medication: just ask for it.
    I always take the assertive stance, otherwise the doctor takes complete control of the visit. Put the locus of control on you by standing your ground.
    And there always is doctor 'shopping'. From what I read many of us have had to do it.
    Hugs,
    NyroFAn
  7. JLH

    JLH New Member

    I have had fibr since I was a child and I am now in my 50s. Of course, I, too, didn't know exactly what it was until I turned 40.

    I have a rheumy that does nothing for me except to preach exercise and losing weight. My PCP who is an Internist treats me for it. I just mainly keep going to my rheumy for all of my arthritis and lupus problems.

    Even if your PCP doesn't know much about fibro, you can guide her in what you need, maybe, if she would agree.

    There are basics that help us. One is an antidepressant. They are proven to help those in chronic pain. I currently take Cymbalta because it also helps on nerve pain and studies have shown that it also helps with fibro pain. However, some people can take it and some can't -- which is the way with all meds. I started out at 30 mg for 2 weeks, then increased to 60 mg, which is the suggested maintenance dose for fibro. (My daughter is also a doctor and I always get a "second opinion" from her!)

    However, with the Cymbalta, I could not tolerate the entire 60 mg in the morning, because it made me too sleepy, so I take one 30 mg capsule in the morning and one at bedtime. I have also taken Zoloft and Prozac, but the Cymbalta works the best.

    I also take Neurotin for the fibro pain. My pain management doc started me out on it. It really helps me. I take 300 mg, 3 x day. A lot of people take a whole lot more than me. You have to find what strength helps you the best without any side effects.

    Another important med for fibro sufferors is something to help you sleep. Most docs start off with Elavil, then progress through that family of meds until you find one that helps. I was really sensitive to Elavil and even a "baby" dose would keep me in la-la land all the next day. I hate feeling so sleepy all day that I have to fight to keep my eyes open.

    So, my doc changed me to Zanaflex, a muscle relaxer. I take only 6 mg a night and it works wonders. I can wake up with no hangover effect whatsoever!

    If you are still having pain, most docs will start you out on Ultram or Ultracet (Tramadol is the generic name) which is a non-narcotic pain reliever. If this is not enough, they will suggest that you add 600 mg of Ibuprofen to it, taken about 2 hrs after your Tramadol.

    Then, if you are still in severe pain, you will probably have to beg your doc for a narcotic pain reliever like Lortab, etc. An awful lot of docs do not believe in narcotic pain relief for fibro.

    Exercise is also recommended for fibro, but some can do it and some can not. Personally, the only type which really helps me is warm water exercise. If you have someplace close that offers the arthritis water aerobic classes, you might want to try them.

    My PCP is really open to me suggesting new treatments, which I have -- about some that I have read about on this board. It is a lot better than wasting your time and money going to dozens of "specialists."

    At one point, my PCP did recommend that I go to a pain specialist -- that was because I have so many back problems and a pinched nerve in my back that is causing me horrible pain. I did, and had 3 steroid injection in my lumbar spine which did not help, and then he prescribed Lortabs and returned me back to my PCPs care and now he prescribes them for me.

    I hope some of this info has helped.

    Hugs,
    Janet
  8. sharleeb

    sharleeb New Member

    I just made an appointment with another Rheumatologist. I go on Monday, January 30th. I sometimes think I'm a glutton for punishment. I haven't had much luck with doctors. Even my GYN doesn't hold much hope. He actually cried when he told me that I had FM. His dad was a doctor too and also had FM. I am going to sit down and write down all of the things I've tried, what worked, what didn't, etc.. and go prepared. I get so flustered and stressed going to doctors so I want to go into the office prepared. Thanks everyone for all of you're suggestions and warm comments. It really does help to know that others know what I'm going through and how I feel. Although, I wouldn't wish this disease on anyone....