My heart goes out to you as well. I thinking finding the right doctor is so important. In that respect, I think we do have it so much better in Canada - we actually can chose who we want to see. I went to a women's health resource centre when I moved back to Vancouver and they had evaluations of local doctors from their patients. I was so fortunate I got a GP who took one look at my list of complaints and said, while she needed to rule everything else out, she thought I had CFS. (It was called the Yuppie Flu at the time. I had heard the name several months before being diagnosed. Ironically, I had thought at the time, 'heh,heh, heh, the Yuppies are sick.' I guess we all have got to pay for our cruelties).
My experience with doctors in this regard is very, very unusual. I've known people who, were misdiagnosed for years, went into therapy, felt worse and finally had the courage to seek other doctors' opinions. And they've suffered terrible losses like yours. While private insurance companies still resist the CFS diagnosis here, the government has accepted it (about 5 years after I first got sick) and so I qualified for a disability pension plan when I couldn't work at all. (I go through different stages).
The other common problem that I know we share is that we often don't look sick (except those who are most severely disabled). You can't see that my legs feel like they weigh a ton or that I have blurry vision. Nor can they see your pain and inflammation. I worked with a woman who has fibromyalgia (likely not as bad as yours since she was working) and by the end of the day, she could barely move. It was quite a bit of slapstick comedy when we tried to help each other. Anyway, I hope you've developed a good coping strategy.
At 09:44 PM 12/16/98 -0800, you wrote:
>Thank you for your wonderful posts on CFS.
>I just wanted to tell you that I felt so much empathy for what you went (are
>going) through. The social ramifications of having a chronic disability
>unnecessarily disastrous. When my unknown fibro hit me I had a four year old
>daughter and was married. My husband kept pressing me to have more
>the midst of all my pain and confusion about what was happening to me!! We
>divorced mnainly because of that. I also had a hard time getting Social
>Security disability here in the U.S. It took a year of fighting SSA to get
>it. Somehow I thought Canada had a better grasp on safety net questions, but
>certainly for CFS it seems not.
>Since my inability to work was also real, I've had a real struggle
>trying to exist on disability benefits. Between that and the ever increasing
>symptoms and pain, eventually I had to let my daughter go live with her
>one of the hardest decisions I've ever made. It would have been easier if he
>wasn't such an ass. The medical profession by not diagnosing my fibro
>hell for me for years. Those ten plus years of looking for a diagnosis (much
>less any medicine for it!) took its toll. I am convinced that physicians are
>some of the highest paid idiots in the world.