Not sure which tack to take now?

[anicholson]

Hi all, I came onto this site a month or so ago, and found all your comments and knowledge very helpfull. My initial bloodwork and CRP was 122, and doctor diagnosed me with polymyalgia, and put me on 15mg prednisone. That made absolutely no difference to my pain ( which is an 8 or 9 most days, but from waist down..mainly in lower back, hips, and upper legs . This has been getting progressively and exponentially worse for last 2 years or so.. have had X-rays, ( specialist 2 years go said arthritis, but has gotten so much worse in the last 2 years..Doctor has now revised polymyalgia diagnosis, as the prednisone made no difference, and my CRP level has now gone back to normal.. I have tried Osteopaths, chiropractors, health herbalists, naturopaths, phsyiopaths,...and am getting to the end of my tether with the pain, and not knowing which direction to go in next.. I am on codeine and tramadol for pain, but neither seem to be effective anymore.. help? Suggestions?

[SheffieldJane]

I just wanted to acknowledge your pain and suffering although I have nothing useful to suggest. I know some of us have experienced a breakthrough with a different doctor. The end of my story was PMR and the dose that worked was 20 mgs . Not everyone on here has experienced raised CRP levels with their disease. Presumably you have seen a good Rheumatologist? Where in the country are you?

[anicholson in reply to SheffieldJane]

I am in New Zealand. I had a referral to a rheumatologist, but she told doctor to send me for new X-rays, and to see orthopaedic specialist....

[Hidden]

Hi

Like sheffieldjane just wanted to commiserate. it does seem a bit strange that they didn't try the maximum end of the pred dose of 25mg to see if that impacted.

I had back surgery for herniated disc in 1999 and whilst it was marvellous in terms of ending 8 months of being bed bound and only being able to crawl, I think the way my body recognises pain was changed. The pain gateways are constantly open telling my brain there is significant problem or injury that it needs to warn me about but in reality it does not exist. Thus scans etc never show anything but the pain gateways are up at 9-10..

I take same drugs but find that amitrypiline helps me get some sleep and seems to reduce pain a bit. Another thing that helped thighs was capsaicin cream which I got on prescription for a while but can't seem to get now but can be bought I think. Look up substance P which the cream addresses.

Constant pain has been a life changing experience for me. I have been on pain management courses which helped me develop strategies to help tune out the pain messages. Distraction distraction distraction. Also once i knew i wasnt damaging body by exercising I found loosening up in swimming pool or walking hurt like h€££ at first but strengthened muscles that had atrophied through lack of use.

Perhaps a pain managememt course would be something that would help you. Have they referred you to.pain clinic at all? Usually consultant anaesthetist(?) who know about pain relief! Good luck🌻

[Hidden]

I am not one for DIY for other sufferers but I like/unlike SJane was put on 20mg from the start which worked. The Battle then started, but that was in the early days! Once all is settled get on the DSNS programme (see PMRpro advice -) Best wishes John

[PMRpro Ambassador]

What sort of specialist said arthritis? I doubt an x-ray would show anything much - they tend to exclude causes rather than identify them. An interested rheumatologist, MRI imaging at the very least and perhaps other things, might show something. Possibly a spondyloarthropathy but that really is a stab in the dark. But otherwise you need at least a referral to a pain specialist.

[jinasc]

Coming from the left field, yes referral to a pain management clinic would be an excellent start.

However you could try Bowen Therapy, which is non invasive and very gentle. Three one hour sessions for three weeks, will see if it is going to help you reduce or manage the pain.

Put Tom Bowen in your search engine and then read up on it, if you do decide to give it a go, then go to the official Bowen website and look for a trained, registered practitioner.

PS I find a tablespoonful of a good brandy helps reduce the pain, in fact at one time I was known as the 'Brandy Queen'.