Wow...that is some life story. Thanks for sharing. My story is not so involved with the failures of the medical world. I am sorry you had to experience all of that, John.
I was almost 18 when I had my first flare. I didn't know what it was at the time, of course. My mom had to help me out of bed that morning and every morning after that for several months. I had severe lower back pain that ran down my legs. It caused weakness in my legs and I would just fall down the stairs without advanced notice.
Mom took me to the military doctor who treated me for muscle spasms, as did the next two doctors. I was put on ibuprofen. 500mg, 1000mg, 1500mg three times a day for several months. No relief came. Then I was referred to an orthopedic specialist. There were XRays, leg length studies, scoliosis screening, reflex testing...and finally a diagnosis...it was all in my head. The doctor actually said that. He left me on the ibuprofen and told my mom that he was recommending that I be seen by a psychiatrist. I never went back to the military doctors. My mom did finally convince them to refer me to a rheumatologist from a blood test that showed positive for an arthritis factor. Unfortunately, by the time that happened I was nearing my 24th birthday. By the time the appointment came around I was 24 and was no longer eligible for insurance coverage under my dad. So, that chance slipped away...I still had no diagnosis.
Until I was 27, I just learned to live with the pain. Once I left home, if I couldn't get out of bed, I called into work, sick. When I was 27 my uncle was diagnosed with AS and he told me that I should be tested. I tested HLA-B27 positive. That bought me a referral to a rheumatologist. I got a partial diagnosis...no xray confirmation, but because of the consistant signs and symptoms the doctor began treatment. She didn't set up another appointment and she told me to follow up with my regular doctor.
I had three months of sulfasalazine, but my regular doctor wouldn't refill it. He said I should go back to the specialist. And so it went. I had some awesome relief with Vioxx until they yanked it off the market. Nothing before or since has worked the way Vioxx did...
Started using a chiropractor after an injury to my knee and shoulder while I was working a car accident as a paramedic. I got more relief from him than everything else combined (except Vioxx). It was the first time in almost 8 years that I had an extended time free of pain. It didn't last, but it was nice while it lasted.
I had six pain free months last year and early this year. Then I had a flare that involved my ribcage...that was a first. I had an injury a couple of months later and the pain has not subsided since then. Over the years I have had involvement in my neck, back, ribcage, shoulders, hips, knees, wrists and hands, heels...I recently learned about the jaw connection...didn't know TMJ could be part of it, but that was one of my earliest problems. It started when I was 19. My family doc recently began treating me for some GI trouble...he thinks its because of all the NSAIDS over the years. Last year he finally ruled out everything else and diagnosed me with asthma. I have had signs and symptoms of asthma since I was about 14. With treatment for asthma and severe allergies I had my first almost normal summer in, well....maybe ever. But, then that's another story.
I have good days and I have bad days. I get depressed sometimes, especially when I have been hurting for a while without relief. But each day when I get up, whether in pain or not, I thank God for another day to live and another day to walk and throw the ball for my little dog, Boo. He doesn't even care if I throw it far or not, as long as he can go and get it.
I wish this wasn't my life, but it is. So, I will live it to its fullest for as long as God allows me to be here...pain or no pain.