Posted 11/2/2011 5:54 PM (GMT 0)
Hi, Rachellou.
I had been going to several GPs for several years complaining of fatigue and malaise and they'd run blood test after blood test and come back with nothing. In the middle of last year, I developed tendonitis in my feet that just wouldn't resolve. I was also having a lot of anxiety and depression after the loss of a very close friend. At the beginning of this year, I started to get incredibly stiff after sitting still too long or after any kind of activity, be it walking down the stairs or walking out to get the mail. Then the pain started in. It got to where I couldn't sleep anymore because I hurt so badly at night. I went back to my GP and he did every blood test on the planet, ruling out thyroid issues, anemia, lupus, rheumatoid arthritis, vitamin deficiencies, and possible infection. When everything came back negative, he gave me a referral to a rheumatologist.
Three weeks later, I saw my rheummy for the first time. It took him all of 5 minutes to notice that I had hypermobility syndrome (loose joints), something no other doctor in my life ever made note of. He asked me a couple of questions, checked for tender points (he quit counting he found so many), and immediately said I was looking at fibromyalgia with some possible osteoarthritis starting in my fingers for good measure. He x-rayed my knees just in case because I've dislocated them so many times, and fortunately no OA there.
Total time to dx? about 10 years give or take, but once the symptoms really became fully apparent, it was about 5 weeks from the first blood test to diagnosis.
Unfortunately, my niece isn't so lucky. She has all the symptoms of fibro but her doctor is being really dodgy about it. She's given her allergy meds, Elavil, Tramadol, and nothing helps her (she also has severe headaches 24x7 and nausea). She finally went to the ER and they said it's actually post-concussive syndrome due to two bad car accidents she had over the past 6 years. PCS has the same symptoms as fibro but with the headaches and nausea to boot. Her doctor is second-guessing the ER docs and wants her to try physical therapy first. So, she's having to wait several more months to see if the physical therapy does anything before the doctor tries anything else. I think it's cruel to make someone suffer like that, but if the doctors don't want to do something, you can't force them to do it. My niece is looking into changing doctors but the state insurance she's on makes it hard to do that.