fused spine - still have pain - what next?

I'm going round in circles.

I have a fused spine including lumbar, thoracic, and cervical but have 3 unfused veterbrate among the fused, 2 in thoracic and 1 in cervical.

While the "textbook" of AS suggests you don't have pain once you are fused, that isn't my story.

I get muscle spasms in the neck and mid to upper back in the areas near the unfused veterbrate. I take Remicade, Soma for muscle spasms, ultram & hydrocodone as required for pain. My pain isn't from inflammation, because the Remicade has my SED rate down to a 1 (used to be 100).

I've been to a chiropractor who said I needed to sit in a reclining chair at work, and who treated me with some gentle massage, heating pad, and TENS. It helps for the rest of the day, then I'm back to square one the next day. I didn't seem to get anywhere with a lasting improvement. He said I fused with my neck forward and I needed to sit in a recliner.

I then went to a physical therpist who did hand massage and some light stuff in the water (moving me around some) then used ultrasound heat and TENS. It was better than the chiropractor, but the symptom relief never carried over to the next day.

This week I went to see a physiatrist and he said the chiropractor was full of &*&* and I didn't need a recliner, and in fact because I was fused he didn't understand why I would have any pain. But, he said I needed a chair with support, he gave me some NSAID type pain patch, and suggested I get into more aggressive physical therapy, not the passive stuff I've been getting.

Well, this pain isn't imaginary. I couldn't sleep last night due to neck pain, then woke up hurting early, and didn't go to work and instead laid around stretching and on heat all day. When I have people give me a back massage, then can feel knots in several places where muscle spasms seem to be. I've had the spasms so severe that I threw up from pain, and I have a very high pain tolerance.

I've been told by other doctors that the unfused veterbrate create an "unstable" condition and the muscle spasms are coming from those taking all the movement I have. Others have said (like the chiro) that it's the position of my fusion. My back does have some scoliosis stuff and didn't fuse perfectly straight, but it isn't more than 5 degrees off (seems like my neck leans forward a bit and my entire spine leans to the right probably 5-10 degrees).

Today I finally found a sports medicine physical therapy place and my rheumatologist faxed in the orders, so I can start any time. I found a different local physiatrist I have scheduled two weeks out, who does both rehab type work and pain management. I'm thinking of waiting to start physical therapy until I see her, but am not sure I should wait.

I'm just sick of all the different opinions and lack of anyone wanting to address the fundamentals. I don't want disability, I don't want on 24/7 narcotics, I just want to be able to work, play golf, and live normal again not in pain. I'm bewildered at how hard it is to find someone competent to help.

Ideas?