Your story sounds quite familiar to me. I've got terrible pain in my peripheral joints, no spinal involvement yet and it doesn't seem like my pain is as bad as yours. Pain started around 16 y.o., diagnosed at 31 (32 now).
There are days when I can't even move my fingers when I wake up, and just holding my toothbrush is alarmingly painful. But there is no sign of fusion or degeneration in any of my joints! It might be why some of us take so long to get diagnosed -- it's an extremely variable disease. I hope you find something that works better for you!
I came to the forum today to ask a question I may have already figured it out. At least for myself. The question was, Why is it so hard for me to set limits(and boundaries to a certain extent). I have had therapy. I have even done talk groups. I know that with my impairments that I need to take care of myself first so I don't become a burden to someone else. But within my family it is extremely triggering when I am expected to pick up the slack for someone else's crisis. I will try to keep the background to a minimum. First of all I learned early on that it is good to do what you can for people without overextending yourself. But there can be a fine line there. I have three sisters with boundaries all over the place. One won't help anybody, one will help everyone, one will help everyone but they won't help her so she leans on people who may not have as much to give while she gives to people who won't help her. I am the youngest and the only one who works. One hasn't worked in 30 years, one is on disability and one is retired and over 65. I have AS, insulin dependent diabetes, sleep apnea, PTSD and the laundry list goes on. I went back to work 7 months ago not because it is fun and I have energy to burn but because I need the money to survive. The assault on my boundaries goes way back to childhood and is ugly(when is it not?) My mother was the worst and I left home at 18 basically to set a boundary between my mother and myself. My sister is sick and her daughters won't take care of her. She has Cdif and is disabled and my oldest sister took her to the hospital. Her daughters who she does so much for cite their children as the reason they can't help their mother. I took care of my father during and after his bypass while I was breastfeeding my daughter exclusively. I stayed with my grandmother after her stroke on the weekends while I was in college. I am in my fifties and my parents and grandparents are gone. It is the younger generations turn. I am tired. So the question is again why is it so hard? It is hard because I come from a family that makes it hard. They wear you down until you give in. So that it become much more work to stand your ground rather than just give in. They make you feel guilty. This forum is important to me. It has validated many things I have gone through. The nitty gritty day in day out living with ankylosing spondylitis. I look up to people on this forum and have learned much. What I have not done is speak up some of the time I should have. When I had my flare a few months ago I found support from people who understood it the way no one else could. Few words were needed. Thanks for reading and I simply appeal to the collective wisdom of the group. Danielle
Have you had any luck? I have a pretty similar presentation to you, and many years of baffled doctors... rheum #4 things it's a peripheral form of spondyloarthritis. Methotrexate and plaquenil have done nothing for me, bloodwork and x-rays all normal, hla-b27 negative. The deciding factors in my dx were that it's asymmetrical (unlikely to be RA) and the only thing that helps lower the pain levels is exercise -- rest makes it much worse.
Anyway, I'd be very curious to know how you're getting along now!