need tips on seeing a doctor...

Discussion in 'Fibromyalgia Main Forum' started by mmmsccc, Sep 10, 2006.

  1. mmmsccc

    mmmsccc New Member

    I have decided that as soon as my insurance starts I am going to start trying to find a doctor that believes in and treats CFS. I had given up on doctors because I have been mistreated by so many of them and have been told too many times "you are perfectly fine"....then i go home crying because I dont feel fine. Anyways, I am pretty sure that what is causing all my symptoms in CFS. I've done much reading on it. what i need is advice on what to tell the doctor...basically how to present my symptoms to doctors to make them understand and believe me. These symptoms started after I had Mono. about 10 years ago. The sore throat and fatigue never really went away. Then a year or two later i start getting the joint and muscle pain. Oh, and my mother and brother both have CFS. (I thought they were full of it until I started getting symptoms too. Now i feel guilty about that) Anyways, any advice would be greatly appreciated. Also, I live in Florida, Tampa Bay area. Does anyone on this forum live near me that knows of a good doctor around here?

    Thank you all for listening to me rant again. I am finding this forum very useful and comforting. Nobody in my life (except mom and bro.) believe me and the emotional hurt and loneliness of suffering in silence is worse sometimes than the actual physical suffering. My mom retired early and remarried a man w/ money so she is lucky to be able to rest. My brother...well he is an alcoholic and even though he has CFS too, he invalidates my symptoms. So basically, I have nobody in my life that cares or believes me and it has caused me to be depressed on top of this all.
    So that is why I am glad to have found this forum. Thank you all for listening. And I am here for you all too.

    PS sorry if i dont reply to posts often. I dont have a computer and I only post when i get off of work...i briefly use the computer at work. Soon as i can get a computer at home i'll be sure to reply more.
  2. Shannonsparkles

    Shannonsparkles New Member

    Sorry you got slid down. The board is moving so quickly lately! Hope someone will help.
    ((love)) Shannon
  3. minkanyrose

    minkanyrose New Member

    what to say but will post so you stay on top so someone will see you. hope you find an understanding dr.
  4. shar6710

    shar6710 New Member

    I don't live in Florida so I don't know about a specific doc but I found a good one by doing a google search. Sometime when you have computer access (or maybe go to a library if you have the energy) just type in CFS in Tampa. You may have to weed through a lot of pages to find something. I found a great Doctor at an Integrative Medical clinic and you might be able to do that just by looking in the yellow pages. If your close to a university hospital try there too. If you get a lead I would call and without giving your name ask if the doctor has an interest in CFS.

    I am lucky to have gotten ill only recently and I know people who have had this for many years have been treated very badly by the medical community but there are doctors out there who believe and wil try to help.

    Good Luck,
  5. Leaknits

    Leaknits New Member

    Well, I'll tell ya: the CFIDS Association put out an advisory a while back that suggested people looking for a dr NOT say they wanted to find one who knew what CFIDS is or how to treat it.

    I'm sorry, but I don't understand that. If I didn't want a CFIDS dr I surely wouldn't ask for one, but what if I did want such a rarity?

    The advice just struck me as a huge waste of time, both mine and the drs, if (s)he didn't understand this d'd and/or wasn't willing to believe it exists...or wasn't willing to let the patient have some input as to treatment.

    I can't count the number of drs who supposedly understood CFIDS but could not understand that some of us with the problem react oddly to medications, can't deal at all with some, etc.

    I wish you luck!
  6. mmmsccc

    mmmsccc New Member

    i just wanted to thank everyone for their wonderful advice. I am so scared to start going to doctors upsets me so bad every time i get invalidated or brushed off by another doctor. Please send me lots of prayers. Again, thank you so much. I will send youa ll my prayers as well...hoping someday we will all feel better.
  7. mmmsccc

    mmmsccc New Member

    the advice you gave me on patient/doctor relationships was very helpful and i just wanted to thank you.
  8. aubrygreen

    aubrygreen New Member

    i have had trouble getting doctors to believe me as well... i've found that the more specific you are, the more likely they are to take you seriously. like, instead of saying "i hurt all the time and i'm always tired" you say "i have stabbing pains in my lower and upper back and my knees ache when i wake up" or whatever your symptoms are. i keep a journal of my symptoms every day along with my activities- i recently added what i eat because i've been having stomach problems. that way i can bring in my journal and show it to the doctor, i dont have to remember it and try to explain it all in one go.

    also, one thing that's always frustrated me is the silly "pain scale" they always ask you about. i never know how to rate my pain, i'm afraid they'll think i'm exaggerating or they wont take me seriously. or i'll pick '3' because it's in the morning and things aren't too bad yet, and the dr. will take that to mean that i'm not really in pain at all. so what i've done is create my own pain scale that's a lot more specific and gives examples of what makes me feel a specific way, or what might make someone feel that way. it starts at '0- no pain. I don't remember what this feels like' and goes to '10- pain from scalding burns that leave scars for years'. 3 is low enough pain to be functional, 5 is functional in an emergency, and i'm usually a 3 or 4. so i bring that in too and it's pretty helpful.