I can so relate. I am on my 3rd rheumy and drove 2 hours to see her.
okay a little background quickly - I've been in pain for about
5 years, but became really ill may '08. in bed for months until prednisone was prescribed by my angel of a PCP. 2 months later Rheumy #2 wanted me to taper off the pred immediately. back in bed! then in May '09 I needed to help my dad get through his wife's cancer and death. she died in June and Rheumy took me off the pred then. why? because although I have ana of 1:180 +, malar rash, severe joint and super severe deep muscle pain and weakness, fatigue, photo sensitivity, chest pains when I breath... he was sure it was fibromyalgia alone. now the only time in the last 2 years I can function at any level was on the prednisone. no matter what I said to the rheumy he just told me that I had a bizarre form of fibro. ??? also once he got frustrated with my protests and told me I was too much of a control person and just didn't like not being able to control how I feel. well no $#!^ sherlock, who would.
cut to last Monday - went to the SIU school of medicine to see a rheumy there. come to find out - my rheumy (of whom I spoke above) ran the antibody tests IN DECEMBER OF '09!!!. not only do I have a pos ANA but I have a positive anti-sm.!!! of all the tests you can take for lupus that is the most conclusive. not having a positive anti-sm does not mean you do not have Lupus but it is extremely rare to have a positive anti-sm and not have lupus.
I am just sure my rheumy had really good reasons why he never told me about
the anti-sm but I tell you one thing. my dh wants me to make an appointment so he can go with me. I do not have the money to bail him out of jail so, I don't think so.
so here's the bottom line. I am much worse than I was a year ago so how much damage has been done by not treating me? I know my family has suffered! I wake up sobbing my upper arms hurt so bad when I roll over.
the new rheumy is going to support my PCP for my care. thank God. plaquenil with pred until is kicks in is the plan.
sorry - I didn't mean to push you off your soap box, I was just trying to join you :)