I have AS too, and although I was diagnosed at the age of 17, it has progressed within the last 6 years. ( I am 30 years old, female). It started in my hips, knees and back. Over the past 6 years it has started in my neck ( mad pain!) and my shoulders/chest. Most of my treatment has been through the NHS (in the UK). Sometimes the \"pain management\" feels like a full time job in itself. Hydrotherapy is fantastic, but I currently do not have access to it - there is only 1 place in all of Greater Manchester that offers it ( on the NHS) and it is not accessable via public transport. ( and is only open 9am-4pm during my working hours!!)
I religiously carry out an easy home physiotherapy routine each day that takes about an hour. I find that these exercises are my saving grace. ( So do your stretches, people! they are free, effective, and you don't need to go anywhere to do them!)
At present, I am taking diclofenac ( NSAID), methotrexate, Paramol for the pain as and when needed. I am about to start on Humira this week. I also find that smoking weed helps both the pain and the nausea caused by all the pain medication. (especially Methotrexate!)
I generally live an active lifestyle still and find that if I am stiff, the WORST thing i can do is rest and be immobile. It just makes it all worse.
I'll give the Humira a go and see how i get on with that one in addition to the others.
All the best to all AS sufferers - its not an easy one for other people to understand! One day you can run, the next day you cant even sit up or lay down or stand, or sleep... then the day after that, you can be doing cartwheels again.