So, after a year on steroids, that have not been necessary,and 20 months in pain, I have to get off them and find some other forms of pain relief. I am angry with the previous 2 Rheumatologists who have not been clear about my diagnosis nor offered any viable alternatives to the Pred. Who knows what long term damage the pred. has done.
Prof. Dasgupta said I do have fibromyalgia and will put me on Amytriptillin. He is also doing some more investigations to see what is causing the inflammation. He thinks I may have Sacroiliitis. In any case, he said that PMR is being over-diagnosed and steroids are being over-used.At least I now finally have a plan and will have to ride out the pain that I have always had when reducing the pred. He feels it is likely that that pain is all due to the streoids anyway. He wants me to reduce by 0.5 mgs per week which means another 6 months before I can put it behind me.
Thank you to everyone who has responded to my questions here, especially Celtic who has been supportive, sensible and informative.