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When I was seeking a diagnosis, I decided it was time to take control where I could and hired a trainer. I explained my medical history and my current condition (with no diagnosis) and was immediately put with the most senior trainer at the gym. She worked with me for about a year while I was struggling to get a diagnosis then make sense of the AS. She modified everything we did to protect joints and strengthen all the supporting muscles. It was the best thing I have done in my overall treatment. She also did go online and research AS and talk to other trainers and PTs about what NOT to do with a client who has AS. I lost 25 pounds and built a lot of muscle(which brought me back to a healthy weight).
My routine was to do cardio on my own and strength training with her so she could teach me how to modify everything and protect my spine, hips/SI, and knees. I trained with her twice a week and did cardio (elliptical, running, bike) 4 times a week for an hour. I cleaned up my diet, too. I eat tons of fruits and vegetables, mostly organic, minimal meat, and keep my portions small.
I went into things with the goal of being healthy--for me that was a better motivator than weight loss or muscle gain. I could stay motivated for overall health and less pain as a result.
Good luck,
Laura
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