Hi! I'm sorry you are in so much pain and I understand how you feel. I was diagnosed with AS in 8/2011 (age of 29) and was in awful pain for quite awhile. I was also having severe fatigue. I would barely survive my work-day and force myself to regularly exercise (running - [although I think running overall doesn't really help my AS b/c it makes the muscles in my lower back tighter, but it definitely helps me mentally], elliptical, light weights or yoga) because I would usually feel better after my work-out, but I couldn't sleep through the night because the pain would always wake me up.
I was having recurrent severe iritis; my ophtho wisely tested me for HLA-B27 and I was positive. I've had severe lower back pain for years but never sought treatment for it and my immune system has always been a little out of whack (i've had shingles and had to have a tonsillectomy at age 28 b/c they were super swollen and I usually got sick about once a month). Anyway, my rheum strongly urged me on my first visit to start on a TNF alpha inhibitor, spec. Humira, as she felt my AS was rather severe, but I resisted for months because I was concerned about the side effects. I am an oncologist and avoid anything that might increase my risk of cancer. However, the NSAIDS she prescribed didn't touch my pain and my professional life, personal life and social life were suffering immensely. After I couldn't take it anymore I decided to give Humira a try. Sometimes it helps and sometimes it doesn't, but I am able to work and live more like my old normal self than before. The pain and fatigue never seem to go away completely, but taking Humira, regular exercise (esp yoga and stretching daily) even if you don't feel like it, eating healthy (trying to avoid too much processed foods & sugars), a good massage and finding healthy ways to manage stress help a lot. When the pain is bad, I use a heating pad which offers a little bit of relief - there are 8 hour single use heating pads that you can strap on available at most pharmacies that really helped me get through some rough days. Usually I just try to focus on something else and be glad I don't have something worse than AS. It's also good to let yourself rest when you need to, otherwise you'll just start feeling worse and worse. Hope this helps and hang in there!
all of my docs have never seen AS as severe as mine, apparently I'm a rare case. feeling pretty down about all this. Does it get better? ... I can't even manage a full days work anymore because my pain is so bad. My work is pretty good with letting me go home whenever I need to, still sucks tho. My rheumatologist recently upd my dosage of remicade even tho they weren't allowed because of my weight. Up too 600mg when I should be at 200mg ... Anyways, any back strengthening exercises you can recommend ? I do weight lifting but find that hurts a lot! I don't know what to do anymore! Nothing seems to help! Not sleeping at all anymore. Heat doesn't seem to help much, unless its a bath.. My docs are talking about a hip replacement but I'm avoiding it at all costs because I'm only 20! This is ridiculous .