Apparently I'm a terrible mover. Normally I'd take something like that as an insult but the comment was made my an expert physiotherapist and she is going to help me get better control over my muscles. Yay!
Yesterday I went to Northern General Hospital in Sheffield to see Mr Stanley. It was the shortest consultation I've ever had. I walked in the room shook his hand, he said very nice to meet you but you need to see my physiotherapist and he asked me to go back to the waiting room.
It wasn't a wasted journey, I saw his physio and it was a very worthwhile consultation. She gave me a proper examination and declared that my joints were very lax, my posture was awful and my control is poor because I am using momentum to move. It's going to take a lot of work but hopefully I can make some progress. I had an x-ray of my shoulders just to rule out any anatomical reason for my problems but thankfully my bones are fine, it's just the soft tissues that are rubbish.
It was interesting discussing the things I've been told in the past. Two years ago I was diagnosed with shoulder impingement, the physio told me it is always down to lax joints in people under 40 (I was 36). I had also previous been told to do stretching exercises but she said they weren't going to do me any good.
I'm very grateful I've found someone who can finally help me. She asked where I'd like to be in two months time. I said I'd like my condition to be more stable because at the moment I'm constantly battling something or other and I just can't carry on like this.
I'm still suffering with a very sore throat and dry mouth. The spray helps a little but I just feel completely dehydrated despite drinking four litres of water a day. I've been getting headaches and sinus pain too and my tooth still feels rubbery when I bite on it. I don't think this problem is going to go away any time soon but I have to wait another three weeks before I see an ENT.
I have been Googling my symptoms again and asking on forums. The top possible answers seem to be Sjogren's Syndrome and Sarcoidosis. Unfortunately they are both difficult to diagnose and treat so I hope it's not that.
I do get very frustrated that I am left to research my own health problems and diagnose myself. If I had not directly suggested POTS and JHS to my doctors I would still be suffering under a vague diagnosis of ME/CFS and not receiving the treatment I need. At least now I seem to he heading in the right direction.