I've been reading through the archives here for the past couple of days and sometimes wonder if I am the only one as bad off as I am. I don't have AS, but more of an undifferentiated spondylitis (sp) - connective tissue disorder. One symptom is severe SI pain/back pain though, plus enthesis throughout all my tendons throughout my body.
I have an excellent rheumie- highly skilled + very caring, so I don't think there is better medical care to be found.
I've been on Enbrel for 9 years, plus I take Indomethacin, Imuran, methotrexate, morphine, ambien, xanax, tons of fish oil, etc.
I keep a list of all medications I have tried over the years and it currently is over 70. the ones I am on now are the ones that actually work, like I will feel it if I miss a dose, and the side effects are tolerable. One drug that made me feel so good was cyclosporin, but I developed the most intense throbbing migraines of my life on it and had to stop. The cyclosporine took away so much of the general pain throughout my body.
But my body is just getting progressively weaker and weaker. Its like the meds are doing their job, but they can't keep up with the disease progression, and I have a problem with only tolerating lower doses of many of these drugs. My rheumie would like to double me up on some of them, but my body won't take them.
I even had a trial for a pain pump earlier this year and my body would not accept the opioids even in that form (into the spinal column, which by passes side effects for many people).
I don't even feel that any of the advice on these forums even applies to me any longer because my disease just keeps marching forward and I am just becoming a very debilitated person physically (and emotionally at times of course). Its moved beyond just feeling like pain limits me, its like pain inhabits every cell in my body and I just can't fight against it any longer. I feel weak and exhausted with the slightest exertion.
All this started 12-14 years ago and its just been a long hard battle ever since.
Anyway, if there is anyone who has experienced something similar, perhaps you will reply. I'm not looking to be cheered up or encouraged, just to share my experience with someone else who might understand.