That's probably a rhetorical question because 'next' is a phone consultation with my GP next Tuesday, which seems a long time to wait right now.
The story so far: August 2016 I was investigating possibility of mild fybromyalgia/chronic fatigue. I had blood tests and everything was normal then.
Health deteriorated and went to GP in April 2017 and blood tests showed elevated ESR.
Doctor said I had PMR and put me on steroids, starting at 15mg. After a month or so at this bloods were normal.
Reducing to 10 resulted in elevated ESR again.
Up to 12.5 and I was OK. Since then I've had two attempts at reducing, using PMR pro's tapering method. I have failed to get below 11.
In April I visited my daughter in Jersey City. I had set myself a goal of getting down to 10 before I went but at 11 symptoms came back. Blood tests showed elevated ESR again. GP said to go up to 12 or 13 and get another blood test when i came back.
Any way I decided to go up to 13 to allow for the stress of the journey. I booked wheelchair assistance for the flights, thanks to advice from this forum and the journey was fine, although I was glad I had my husband with me. When I was there I got out and about just enough to be reasonably satisfied although maybe not as much as I would have liked to. Once I got home it did take me longer to recover than I'd really expected but I was OK. I eventually had a blood test last Friday.
By yesterday I seemed to have come to an acceptance that I'm in this for the long haul and I'm probably going to stay like this for a while. Up until now I think I'd been assuming that if I just gently upped the amount of exercise I did and did 'all the right things', whatever they are ☺, I would slowly get more energy. I'd assumed for instance that I'd be able to do a little more this summer than last but now I've realised that's not the case. Somehow that realisation has felt wonderfully freeing and is making me think more carefully how I manage my life and priorities. For instance maybe I'll use Tesco 'click and collect' instead of going in and flaking out halfway round! One thing I learnt when I was away that getting out and about a bit more than I do at home is good for me, but I need to keep it simple, e.g. just go out for coffee and may be a short walk but not try to combine it with shopping and one or two other errands.
Anyway this morning I rang up for the results of my blood test. The receptionist I spoke to wouldn't give me the actual ESR results but they are 'abnormal' and need non urgent review from the doctor. So now I'm not sure where I'm going or what's going on.
I've never been totally convinced that I have PMR. I've not experienced severe pain or the stiffness that everybody else talks about. I don't have the symptoms that go with CGA either. I do get very tired and have aches and pains around my head and shoulders and my arms are quite weak.
Yesterday I had the strange feeling that from my waist up I was exhausted but my waist down was fine! I'm wondering if I've got something in the middle as outlined in a rheumatology journal that's been posted on here. I suppose at the moment all I can do is try to keep being calm and accepting and wait to see what the doctor says next week.
Up until quite recently when people have talked about side effects of steroids my reaction has been 'side effects, what side effects' but since going back up to 13 I've noticed thinning skin and hair loss and possible loss of muscle so I was hoping to reduce ☹