Why do we know more than the doctors do??!!!!!!!

Discussion in 'Fibromyalgia Main Forum' started by Sun_Rae, Nov 22, 2005.

  1. Sun_Rae

    Sun_Rae New Member

    I'm sure you've all had this experience, but I decided after 14 years that I'd see my GP and divulge my sick secret that I have CFS. I haven't said anything for fear of being ridiculed, as many of you have felt.. Well, I asked if she knew of a Doc in Albuquerque or ANYWHERE in New Mexico that is knowledged in CFS issues and here comes that look... "Hmm, and what makes you think you have CFS? Who told you that?". Get this, she pulls out an iPAQ (a PDA), and says, "there's a support group in Oregon and Kansas City." That's nice DOC, but I already HAVE a good support group.. What I want is someone who can help me with my symptoms. It's been 14 years! Hasn't anyone come up with anything yet?

    Anyhow, I told her there were thousands, perhaps millions, of us out there and no one seems to know how to fix it (or even seems interested enough to go to war against this)! She said that she'd talk to the other GP's in the office and see if she could come up with anything. If she comes back with anti-depressants I'll throw a fit!!!!!!!!!!!!!

    Sorry to bash GP's, but it's soooo frustrating. Just venting. Thanks for listening.

    -Sun_Rae
  2. nanna4550

    nanna4550 New Member

    A friend of mine has CFS, but not really having symptoms now. She went to a Naturepath who has her on vitamin B complex, Probiotics, Castor Oil packs on her stomach, Omega 3, and other drops. Anyway, it took a bit of time, but she found she had an allergy to mold. She takes mold drops, but also sprays everything with bleach, her hubby added ventilation to her crawl space, she avoids cheese, mushrooms, wheat, dairy, sugar, caffeine. She works 4 days a week, and seems to have the energy to do most of what she wants to do. Before, in the spring after a wet winter, when the sun warmed things up she'd be in bed for a few months and was so tired she couldn't do anything.
    I went to this same Doctor for FM, but after 2 years of the same protocol, I still was in the same amount of pain, so I still do the probiotics and try to avoid sugar and dairy, but wheat is so hard not to eat (no pasta, no bread, no crackers is too hard).
    Anyway, she got the same run around and normal tests as the rest of us, and suggestion to take antidepressants.
    Best of luck to you. I hope you find some help.
    Janice
    Nanna4550
  3. kaiasmom

    kaiasmom New Member

    Ever since I was diagnosed in March I have been doing tons of research. Doctors have many topics to choose from when it comes to continuing education - and all too few choose to study CFS & FMS. It is sad, but true.

    Good luck,
    Leanne
  4. Pianowoman

    Pianowoman New Member

    There is a difference between not listening to us and not knowing about CFS/FM. As a nurse, I always found that patients with chronic illnesses almost always knew more than the medical staff.I accepted that and learned from them. As has been said, we spend hours researching and reading and hopefully good Doctor will respect that.

    It is true ,as well, that we need more Doctors to study these diseases but there are so many diseases that are even mroe common that they have to read up on. If we had more Doctors who became interested in CFS/FM and chose to specialize, everyone would be better off. Thats'a whole other topic though!!

    Kathy.
  5. AnnieKidwell

    AnnieKidwell New Member

    I went to my doctor for 7 years trying to get them to figure out what was wrong with me. Finally a friend of mine said I had the same symptoms of Fibromyalgia. I had to take information in to them and ask them to consider this disease. They finally diagnosed me after I wouldn't go away. Over the years I have been on 9 different antidepressants. I know what you mean about trying to give you another one as "a cure"

    Good luck,
    Annie