Keeping diary of symptoms

Hi,

For those of you who have followed my posts you will know that i was put on a weeks trial of steroids and taken off them because i did not respond as i should have.

I have been trying to log symptoms and have noticed that some times i dont have the horrible pain for a short while but can still feel hot and flu-like. Also i dont always have the worse pain first thing in the morning. I am usually stiff but the pain is at its worse when i start trying to move. I can however have terrible pain when i am falling to sleep.

If i have a period of little pain and stiffness i always have this sluggish/hotness and extreme fatigue where hotness and sweating is incresed with activity.

Is it possible to have PMR with periods of little or no pain when i am not on steroid medication?

Thanks Christine

9 Replies

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  • My pain was appalling shoulder and upper arm pain. I could not lift my hand to scratch my nose it hurt so much. Also dreadful pain in my thighs, it could take me an hour to get out of a chair as I screwed up the courage to face the pain. I don't remember it being that variable, it was there all the time, unless I lay down in bed and stayed absolutely still, one movement of even an inch was agony though. I was in so much pain stiffness did not come into it, although that is one of the checks that you should have over forty five minutes, I think it is, of stiffness in the morning. What about your ESR and CRP readings? That is another indicator. In my case pred was like a miracle.

  • esr has been 32 and 31 for a few months. Pred did not improve symptoms for me. Its possible im looking at something other than PMR. Can i ask you if you had flu-like symptoms and generally feeling very unwell.

  • Yes I do have flu like symptoms, not so much now. I think I have been more aware of them since I started pred though. I think I was in too much pain to notice anything before.

    I suppose PMR symptoms are bilateral pain in shoulders and/or hips.

    Increased ESR and CRP. Although some people do not have this.

    Rheumatoid Arthritis, vit D deficiency, fybromyalgia etc discounted as the problem.

    Morning stiffness at least forty five minutes.

    Pred improves symptoms like a miracle.

  • The miracle did not happen for me, the reason could be thats its not PMR. Im still waiting for rheumy appt and hope he can get to the bottom of it. I dont think its RA becuase my fingers are not that affected although i do get pain in my feet and toes.

    Im just second guessing now but it has helped me chatting on here even if its only to rule out conditions.

  • Don't necessarily rule out RA just because your fingers are not that affected. Someone I know has confirmed RA and her fingers are not affected at all at this stage. Her hips and knees are her main issues. She also has foot pain. It does help to talk on here, because it not only helps rule out things, but it also lets you know that you are not alone and there are no set symptoms that affect everyone. We all react to PMR differently. It may be to your advantage to enter RA into the search bar on here and read some of those posts as well, if you haven't already done so. Check and see if everyone suffering from RA has problems with their hands. Good luck.

  • Of course it may be that you needed a slightly higher dose of pred, say 20mg, and to even try a little longer than a week.

  • You could be right but i dont think my GP was confident enough to do tha.t

  • I just hope your rheumy is more assertive. As you now have a diary you can explain exactly what the symptoms are. Just hope they come up with an answer quickly.

  • I suppose I did for the first 5 years - I had pain almost all the time but not always the same and occasionally I felt not too bad.

    But these things are almost certainly autoimmune and there are very very many autoimmune disorders. PMR typically responds dramatically to a moderate dose of pred. Maybe your dr should have tried for a bit longer or at 20mg - but if there was no response at all it very likely NOT PMR.

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