It is perhaps 18 months since I last posted on this forum, but I follow all the threads with interest and derive a lot of comfort and many smiles too from the incredibly caring people who post regularly. 69y, previously very fit and active, diagnosed 2 ys ago, I started on 20mg reducing to current 3.5 mg currently, following a version of Ragnars regime throughout the taper. Stressful family crisis sent blood markers up a little last year, so had a temporary return to 10mg from 7mg and then tapered back down. My problem is, although most of the stiffness has gone (I can still play 9 holes of golf occasionally and garden a little on most days), my pain levels have never really reduced that much. I have a fairly high pain tolerance, yet I have needed Cocodamol x 2 four times a day, and recently as a result of being referred to the local Pain Management Clinic, now use Oramorph for breakthrough pain that gets in the way of day-to-day life.
When I was under the care of the Pain Management Clinic the aim was to try to find a form of pain relief that did not depend on medication. They gave me a course of ten acupuncture sessions which did little to affect the pain. I have a TENS machine which causes some diversion when the pain is more achy/muscular, than the spasm/nerve type pain. In the end, they came to the conclusion that in order to be relatively comfortable, I should take Oramorph when the pain breaks through my usual pain medication. I have been using Oramorph once or twice later in the day, on most days, and then I can be relatively pain-free for a few hours. Of course, like the rest of you, I have those wonderful times when for no explicable reason, I am pain free without the need for extra medication, and raise false hopes that the ‘beast’ has gone!
Of course, describing pain to another person is almost impossible, but in essence I have a cape of deep nervy/creepy/spasmy pain around my shoulders, neck and rib area, but with more intensity on the left side often stretching down to my left buttock. Walking around and moderate activity eases the pain, indeed often clears it, but of course soon exhausts the limited energy supply, so that is not a viable solution. The most pain is felt during sitting. Lying absolutely flat is the most comfortable, next to exercising, but when the pain is at its worst is still not sufficient. I have a wonderful chiropractor (who is well up on PMR and in fact initially told me to go and see my GP as she was sure I had PMR) who keeps my poor abused back fairly mobile (the penalties we pay for an active and varied sporting life!). She seems to think the majority of the pain is PMR related and not as a result of mechanical defects.
My GP is also very sympathetic, and recognises that my pain is not reflected by the consistently low ESR/CRP readings (the only time they were in double figures was on diagnosis). She lets me manage the way in which I reduce, as long I as continue to reduce, and is aware of the 10% rule, provides me with a supply of 5mg.2.5mg and 1mg Pred as needed, has agreed that I should stop AA in light of its bad reputation, and makes sure I have an annual DEXA scan. I rather think, she too, is at a loss as to know what to do next, as to get to be pain free, I guess I would have to go back to about 20+ mg and that is not acceptable to either of us, as, however slow I go, anything less than that and the pain reappears (although happily not the stiffness).
I don’t feel so alone now I’ve shared my whinge, so thank you for ’ listening’ and any helpful advice would be appreciated.
Janet :?
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