I had a physio appt today. I've had as much help as she can currently offer, and I agreed with her. She saw me about 6 weeks ago, and was really shocked today by my appearance (I rarely look in the mirror because I find it rather shocking, too). I spent last year determined not to fall below 8st, and by the end of that year changed it to 7st, but I've dropped into the 6st range over Christmas and New Year. She is naturally concerned about the balace between physical exercise and energy expended in the process.
She nipped off to see what occ health can offer when I explained that the most comfortable way I have found to sleep is to restrict it to three hours in bed, then an hour or two propped on the sofa. Occ health made all the suggestions I've tried (I generally say thanks for this kind of advice rather than appearing negative).
Finally I asked what was in the records that explain why my rheumy appt just before Christmas was cancelled because the junior doc "didn't know what they can do". The records say that they have stabilised me, and I'm discharged. How do they know? Nobody has checked since I started hydroxy in Oct 2014. They do, apparently, want me to continue to take part in the research because of my fascinating nailfold capilleroscopy. Much as I would like to help with potential medical advances, I'm *%#ed if I do this while discharged and uncreasingly unwell.
So, back to GP, back to waiting ages for a fresh referral, and close to giving up.