I wonder about my doctors sometimes-what do you think?

Discussion in 'Fibromyalgia Main Forum' started by EllenComstock, Mar 5, 2003.

  1. EllenComstock

    EllenComstock New Member

    Hi, Everyone:

    Like many of you, I have been doing lots of reading and research on fibromyalgia since I was diagnosed last summer. I went to a doctor in Monroe, MI who is a fibro specialist. I went there two times a week (an hour one way from work) for massage therapy for several months. While it felt good while they were doing it and shortly afterward, the pain and stiffness came back soon afterward. Dr. Barbour did some tests on me to rule out any other problems and then did diagnose me with the fibro. I was already sure I had it before I saw him and told him so. Anyway, I have been considering trying the guaifenesin (sp?) after reading the book and have been getting info on this. I have decided I will try it when I am working half-time this summer since I understand that in the beginning you will have a major flare-up and I can't do this and work full-time.

    Yesterday I found information on doctors who are knowledgeable on the guaifenesin program and discovered that my doctor in Monroe is one of them. Why didn't he suggest this for me? Has anyone else had this experience? Has their doctor recommended this program to you or did you have to bring it up yourself? Of course I realize that many of you are probably just doing this on your own. I was going to call his office anyway to be sure that the guaifenesin doesn't have any adverse reactions with the medications I am currently on. Now I'm thinking I should go and talk to him (if I can stand the long drive and the two-hour wait in the waiting room).

    I guess I am so tired of always being the one to suggest things and have been the one to finally diagnose myself with endometriosis and fibromyalgia after years of being mis-diagnosed. I was told years ago that I was born with a too-small bladder and had three bladder surgeries over the course of ten years which were totally worthless! Getting more than one opinion didn't matter-they all said the same wrong thing! Turns out, the endometriosis had webbed my uterus and bladder together so that's why I had pain in that area and frequency.

    Then an endo specialist wanted to do a hysterectomy after I complained about increasing pain all over my body. He told my husband, "She'll come back after she's tired of living with the pain". When I told him I thought I had fibromyalgia and that no hysterectomy in the world is going to eliminate that pain, he didn't say much, but I could tell he was angry. So be it. It's my body. They are the ones who are supposed to have all this education. Why do I have to be the one to diagnose and prescribe my own treatment?

    Sorry to rant, but I guess if I can't do it here, where else? Thanks for listening.

  2. LeLeHpr

    LeLeHpr New Member

    Ellen, sorry I cannot answer your question. My doc is not helpful at all. Just pain meds, exercise and rest..So, I am clueless until I get another doc...Hope you get the answers you are looking for.

  3. Mikie

    Mikie Moderator

    When I bugged my doc over my weight gain, elevated cholesterol and blood pressure, he just said to "watch my diet," whatever the hell that meant. The next time I went in, I had read the "Nutritional Guide for Snydrome X," lost 20 pounds on the Suzanne Somers diet, had my blood pressure and lipids back to normal, and you know what he said? "I've known about Syndrome X for 10-12 years."

    Well, DUH, doc, connect the dots next time. I present with the symptoms, he does nothing for me, so I end up having to research and do it myself, and then he tells me he knew of this problem and treatment fo 10-12 years. Makes me wonder what the hell I need him for; oh yeah, to write the prescriptions I need for the treatments I research myself. Well, at least he's willing to do that.

    Honestly, I think he is a reasonable good doc, but this got my dander up.

    Love, Mikie
  4. Plantscaper

    Plantscaper New Member

    THE ONLY VALUABLE DIAGNOSES have mainly been thru my exploration on my own..I have diagnosed most of my problems thru my own research and have been right on target in most cases..whereas, it seems that most docs have no clue or mistake particular symptoms for something way off..if I go over all the symptoms they (if they know about it) usually agree..including ADD (attention deficit disorder), insulin resistance, PCOS (Polycystic Ovarian Syndrome), the Yeast Syndrome, Sjogren's Syndrome, migraines (was verified by neurologist), etc. It seems like with these diseases we have to do the bulk of the work, especially with CFS..however, I have never been privileged enough to go to an actual specialist in CFS and have wondered if that would make a big difference..we just don't have any knowledgable docs in CFS in this area..Does anyone know of a "cured" person who has followed Dr. Cheney's suggestions? or any of the docs that recommend all these treatments? or even someone who has had this problems for 20 years and has improved significantly, to the point that they have a clear mind, again, much more energy and many fewer migraines?