The NE site was the original online helpline - open to everyone to read for advice because before it was set up there was nothing to be found about GCA - which is what the lady who moved and shook to get it going had. She met some others online through this forum - and the rest is history. It provides everyone with info and has a forum which functions as a virtual support group - even to the sitting around and having a conversation about ANYTHING, albeit a bit slowly as it doesn't have a chat function :-(
There are quite a few support groups around the country and MrsO is probably the one to ask - I don't even live in the UK! She runs one which meets at Chertsey.
Massage CAN be helpful but only VERY gentle, the same applies to physiotherapy - the therapists MUST know what they are doing and many don't. I used Bowen therapy very successfully for the first 5 years or so when I had PMR but it hadn't been recognised so I had no treatment with pred. It kept me mobile and relatively pain-free. Heat often helps - try an electric blanket in the morning BEFORE you get out of bed. Once you are able to get out of bed and move some that will will help with the stiffness - don't remain seated for a long time, get up and move around every 1/4 hour or so and do very gentle stretches. A warm shower also often helps. Once I was in less pain I also found Pilates and yoga helped - but you MUST have an aware instructor who will adapt things for you and allow you to know where is the stop point. Mine were outstanding in that respect.
"I was so fit and so active and whilst I may still look like that to outsiders..as long as I don't try to move...inside I know how I now feel... I would settle for my legs returning to normal..my muscles easing..my hips working..and my lower back being ok again."
Yes - we know, we were too and we would love that as well! If you have lower back problems then Bowen therapy might well be worth a whirl. I sat for 2 days last week with a warm hot water bottle across the base of my spine - with excellent results it has to be said!
"I wonder if the 35years of high pressure life in the business world could have contributed to how I now am" - don't know about the 35 years but PMR is often associated with a history of stressful events, appearing after a bereavement, retirement or other event like big house moves. What is certain though is that after that sort of life and being able to cope as a high achiever the massive lifestyle change required is even more agonising than it is for some other people who weren't so active and energetic. And it is even worse at a young age - I was 52 when my PMR first became noticeable.
Don't write off the GPs - there must be others in the practice and one of them may be up to scratch. Therewas only one really aware one in my practice of 7 - but once I started seeing her, the others started to catch up. You can also "interview" other local available practices, you might be lucky.
You could call your rheumy's secretary and explain the situation and ask if your review could be brought forward. And there is nothing to stop you asking if he does private work - a single private consultation is probably more point that spending money on Chinese medicine and then you can return to the NHS cycle! Acupuncture doesn't work immediately - often you need 10 or more sessions to achieve pain relief so if whoever you saw led you to believe it was an instant cure they were lying!
Actually - the speed of your reduction to zero was not only pointless and silly - it may have made things worse and contributed to much of the pain and feeling ill than if you had reduced very slowly. Normally, the starting dose in PMR is 15mg so you could try going up to that and staying there for about a month before starting to reduce again, preferably by 1mg at a time but 2.5mg might be OK down to 10mg. It is such a shame you wasted that year at 10mg. I am great at 10mg, 9mg is OK but 8mg is my limit - no matter how slowly I reduce it doesn't work, even taking 7 weeks to get from 9mg every day to 8mg every day. I accept that - whatever the risks of pred it is my life-line. The alternative is being an invalid and in pain and miserable.
Don't allow yourself to get depressed - part of PMR is depressive mood anyway, having a chronic and incurable life-changing illness is also depressing. Yes it is chronic and incurable - but it isn't terminal and it DOES go into remission. Unfortunately, it does seem more persistent when you are younger when it starts.
Give the docs another chance. If you were a woman I would tell you to go to the doctor and not get all dolled up as most women do - let him or her see you without the slap and see how difficult it is to move. Let them see you in tears if that is where you are at home - but you aren't a woman! Nevertheless, when the doc asks "How are you today..." DON'T say "I'm fine." You aren't - and if you were you wouldn't be at the doctor's.
Don't give up yet,
Eileen