What do you do after diagnosis or with no diagnosis?

Discussion in 'Fibromyalgia Main Forum' started by Gelsey, Aug 24, 2005.

  1. Gelsey

    Gelsey New Member

    I've decided to pursue FM research, support groups, etc. I have a half diagnosis from an associate of my primary care doctor, and no real cooperation from anyone else. I suspect I can get my PCP to go along with her associate, and I know my chiropractor will understand.
    I'm trying to struggle through physical therapy, not sure how much it will help after I leave and still end up with flare-ups. My symptoms are not quite as severe as some of yours, but I do have huge problems with stiffness, IBS and TMJ, brain fog, muscle spasms and tremors, and wake up with unrefreshed sleep.
    My question for you all, I know people with Celiac (wheat/gluten intolerance) who never get a firm diagnosis. They simply go wheat/Gluten free and feel better. This associate of my PCP said I should mentally definitely pursue this like I have FM--but no one I have seen does tender point tests, nor did she.
    I guess what I am asking is is it pretty much up to me to follow through on my own? I told my diabetes specialist I had FM, and he didnt question me. The Rheumatolgy dept told me never to come back, after only two visits and negative testing for RA and Lupus. There isnt too much else I can do. I did join a support group and I think their approach is a good one for me.
    I just want to know how many of you ever finally end up with a diagnosis or do you just live your life with self help and get help from your medical team when you can?
  2. Rosaine

    Rosaine New Member

    Hi, I think you must perservere untilkyou get a definite diagnosis. Mine took a year, but once you do you can move forward and get medication, etc. Ros
  3. Rose_Red

    Rose_Red New Member

    You can get yourself in to see a rheumatologist. In your post you said 'rheumatology department' i have to assume at your local hospital. Please correct me if I'm wrong.

    Once you get into a spec that know the illness and the treatments and meds that work the change can be tremendous.

    My doctors and my pharmacists (there are 3 at my pharmacy but I tend to speak mostly with 1. He knows me and my meds by heart) are my partners in my health care. I have built wonderful working relationships with these people. I take my child to these people.

    Without medical help I would probably be in a wheelchair today.

    Slef help only does so much. I find that working together as a team has provided the greatest results.

    You also said that you were struggling through physical therapy. If it's a struggle then you're probably doing too much. Please talk to your physical therapist to see if perhaps you should actually cut back on some of the excersizes.

    Open communication lines are most helpful. If I didn't tell my docs what was going on, all of what is going on or just flat out lied to them (I know people who do)then they wouldn't be able to help me.

    ~michele
  4. Gelsey

    Gelsey New Member

    My HMO has only one rheumatology dept to offer and I pay 600 per month for my HMO.
    The only other office I found said it would be over $300 out of pocket and they suggested I look into help from my PCP. Her assistant at least did use Fm ICD-9 codes, the physical therapist kept saying yes they have it as a diagnosis on my records. I guess I will go over that with my real PCP, but at least someone in her office did write it down as a diagnosis.
    I think my PT session went better today.
  5. Gelsey

    Gelsey New Member

    I see your point. That's why I asked that PCP assistant if it was good to go with a mental approach to FM, stress reduction and such. I cant take meds due to liver problems so I do need other approaches for sure.