Seeing rheumy next week.....

Discussion in 'Fibromyalgia Main Forum' started by HeavenlyRN, Feb 5, 2010.

  1. HeavenlyRN

    HeavenlyRN New Member

    ....and would love to go in armed with questions...AND answers. I am sorta new here and trying to learn as much as I can. I thought I knew it all until I started reading some of these wonderful posts! :)

    Would you folks be willing to point me to sites that might have information about new treatments, other doctors (I'm in Western NY), anything?

    I plan to spend the majority of this weekend surfing and gathering as much information as I can.

    I would really appreciate any help that you can give me. Thanks.

    Forever grateful,
  2. Janalynn

    Janalynn New Member

    I'm sorry, will you remind me of your situation? Did your Dr. refer you to this rheumatologist?

    Are you going in for diagnosis or for him to treat you? Did you prequalify him and ask if he treats Fibro?

    If you haven't had any lab work done, he should be doing that first. I would "hope" that a good rheumy would know to do that, but of course, ya never know. If you've already been diagnosed and he asks you details about that (if other things have already been ruled out) he may not suggest blood work off the bat.

    I can't remember everything my rheumy tested me for. I do know a few things which were Vit D deficiency, Celiac, ANA (Lupus and other autoimmune diseases) they also did a more in depth test for that.
    He did a physical exam, checking tender points etc. and then did a complete history with me.

    The Dr. I saw only diagnosed, didn't treat. My Dr. agreed to follow up with any of his recommendations. I wish he did, he was wonderful. I now see another rheumatologist as a resource to my regular Dr. - or at least that's how it started. I now see him every couple of months.

    For me, I've tried Lyrica, Neurontin, Cymbalta and Savella. I didn't have any luck with those unfortunately. He suggested and prescribed things for sleep (although they didn't agree with me)

    You definitely want someone who is 'up' on the latest and who has lots of experience. We're not easy to treat. We're all very different. Also someone who is willing to go down this road, be patient and caring. That seems obvious, but finding a partner in your care is so important.

    What is your current situation. I apologize that I don't remember. =(

  3. AuntTammie

    AuntTammie New Member

    the two that have helped me the most are this site and the Phoenix Rising forums....if you google P.R. you should get to the home page and then at the top there is a link to the forums....also, pro-health (this site) has a weekly newsletter that is very helpful (see the top of the page), and they have a library of past articles (also see above)
  4. HeavenlyRN

    HeavenlyRN New Member

    Janalyn - I have fibromyalgia and degenerative arthritis in my spine, hips and hands. I have now been on disability for 7 weeks primarily due to severe pain in my legs and back, and secondarily for a fibro flare. I have been seeing this particular doctor for 9 years. He's a nice guy and I like him, but sometimes I feel as though he just sort of wants to get me out of the office. He was the one who diagnosed me. It wasn't until recently that I met his nurse practitioner and I just LOVE her. I feel like she really listens and CARES (what a concept!). Last week I had to cancel an appointment with her because I was in such pain I had to go to the ER for pain control. She called me 2 nights ago just to see how I was doing. Interestingly enough, I had called earlier in the day to re-schedule the appointment for this coming Tuesday.

    During our call she said, "We WILL get to the bottom of this Jan." As the doctor at the ER said, I have had "the million dollar work-up." But she was mostly referring to x-rays, MRI's, CT scans, and some labs. I still believe that there are some labs that haven't been checked. That's why I'm attempting to gather as much information as I can from this board, and any other links that I find before my appointment on Tuesday. I haven't been very pro-active in my own health but I know now that I need to be. My husband was recently diagnosed with Cuching's disease and I was a very strong advocate for him ( = being a bitch when I needed to be). It was a long process and I guess I just got burned out and stressed by his condition (we are still trying to get social security disability benefits for him).

    AuntTammie - thank you for your suggestions also. I need all the help I can get to be a better advocate for myself.

  5. Janalynn

    Janalynn New Member

    I'm so sorry to make you repeat all of that. Please forgive me for not remembering. I can't seem to remember much these days.
    I understand your need to get to the bottom of this. I am in so much pain, I can't believe this Fibro pain can be this bad. I am almost two different people it seems on the days I can manage my pain to the days I cannot. I am falling apart for the first time.

    I've been in the position as advocate for others. I'm good at it. Somehow not as good for myself.
    I wish I could help you wish what to ask for. At least you have a NP who is more than willing to help you. It sounds like she truly cares for you. What a gift.
    I wish you the best.
  6. HeavenlyRN

    HeavenlyRN New Member

    Thanks Janalynn - I'll let you know how my appointment goes on Tuesday.

    And my-oh-my.....don't apologize for "not remembering" something that someone else has written. I don't remember my husband's name half the time! Seriously, more than once on the past few months I have have called him by my ex-husband's name. Oops! Thank goodness he's the forgiving sort!