PMR old timer

[Creas]

Been a while. Took a year or so to get a diagnosis. And I had to order pred online and tell my GP I'd done so before I got a referral to the consultant of my choice (my first referral after a v long wait was to an idiot albeit called 'professor' at an Oxford Uni hospital).

Joel David was my second consultation and he was brilliant - actually knew what he was talking about.

But I've been left now with nothing. Any questions I have need to go through my GP. I'm living life as almost normal and playing tennis but still have extreme pain at night, evening and in morning and I don't know if that's usual with PMR. I can't afford to pay to see the good chap and know the GP is not familiar with PMR - so what do I do?

In particular my pain moved downwards and now is mostly glutes and lower back - (and my neck is still v painful) - is that PMR or something else, and how should I find out?

[SheffieldJane]

Hi Creas, it could be your muscles protesting at the exercise. They don’t exactly spring back immediately after these diseases and Pred. A good wise physio will help with appropriate exercise, swimming and Pilates are also good. In my area there is a 6 week wait for someone. It sounds like you are doing well but the night pain sounds odd. Was your Rheumatologist private only? Mine is excellent, NHS and Leeds based.

[SnazzyD]

So the good chap didn’t communicate recommendations to your GP??

Watch that tennis. PMR bodies are not up to normal exercise particularly explosive or repetitive strain. Might be worth stopping for a couple of weeks and see how it affects your pain.

[PMRpro Ambassador]

When exactly at night IS the pain, where exactly and what relieves it?

Personally - my answer to the question "what do you want for christmas/birthday?" would be to open a Joel David fund.

And I totally agree with the other two comments about the tennis. And what else are you doing in that "normal life"? Even with pred, you have to do your part.

[GHDirect]

Hi Creas. Just in case you missed some common advice I got from this forum when taking my steroids. I now take them at 4:00 in the mornings with tea and toast so when I get up around 9:00 its given a few hours to releive muscle pains and I can walk around 90% pain free.

[AyJayBass]

I have been seeing Joel David privately and agree that he is brilliant. He believes in a VERY slow tapering method, taking 4 months to reduce by 1mg. (I have posted the details of this a couple of times) This has been working for me until I reached 5mg. When I was half way through the next 1mg taper I experienced a minor flare so I have returned to 5mg and I'm staying with that dose until the spring.