Ohhh the relief from pain :-)

Have just been diagnosed with PMR yesterday and given steriods to take and its not even 24 hours yet and the pain has almost gone. YEEEEEEY. Last nights dancing started off quite stiff as usual and then started to ease off really quickly. By the end of the evening it was a pleasure to dance but still quite tired.

Is it normal to wake early in the morning, 5am, when suffering with this?

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  • Hello TiredDance

    I'm sorry to hear you have just been diagnosed with PMR but so pleased that you have had a good response to the starting dose of steroids. Do be very careful with the dancing at first in order to give the steroids a chance to do their job of controlling the inflammation. It can be quite difficult to find the happy medium as far as exercise is concerned in that if you overdo it on one day, the pain can come back to bite on the next.

    I'm sorry to say it is "normal" to wake early in the morning when on steroids. In fact I used to spend many sleepless nights in the early days, possibly because I had a high starting dose of 40mgs due to GCA. Hopefully you won't have too many sleep problems on the lower doses usually prescribed for PMR.

    I do hope you continue to feel better.

  • Hello Celtic

    Good to get your comments on this. I know that it is not good to get a diagnosis for anything that may be long term but I am so pleased to know what it is and the fact that it is something that can be treated. I was thinking all sorts of things that it could have been and really concerned that I would not be able to carry on with my dancing.

    I am a dance teacher and have been for several years with no problem with joints or muscle pain ... Oh how lucky I have been! ... however two months ago I started to get these pains and thought it was a side effect from some penicillin that I was taking. Then doctor said that it had gone on too long to be that! Now I know what it is I feel so much easier ... no more not knowing! I have reduced the amount of dancing I do but it is always difficult as if I am not dancing I tend to stiffen up.

    Early mornings may have to be my time to get emails and computer work done, at least its useful waking early then ;-)

    Hope you are doing well and thanks for the comments

  • It's probably the steroids waking you early, disturbed sleep is a common side effect.

  • Hi DorsetLady

    I did not realise that steroids did that as its the first time I have been prescribed them. I have however been waking up, with pain normally. around 5 most mornings for some time and I was hoping that now that the pain is easing that I could get a good nights sleep. Never mind, at least the pain is nowhere near as bad as it was so that is a positive. Mornings are obviously now going to be interesting.

  • The onset of PMR coincided almost exactly with my purchase of a Kindle which is easy to read in bed. I have done a great deal of reading in the past 18 months!

  • I have just got into reading with my ipad and found it really good. I hope that you are gaining something from your medication and that you will be able to do more than read in the near future. x

  • Glad ur pain went after one dose of steroids ur lucky, ive been on steroids since july and still get pain along with everything else . I havent been able to wprk since july, i carnt walk far let alone dance . Give me advice on how to get more mobile pls as what ever ur doing works x

  • Hi Steph1 ... sorry to hear that you have not been as lucky as myself. I have always been very mobile and finding that I couldn't do what I was used to was a real blow for me but the tablets have really worked well for me. I even when to the jive club tonight and had a great time and so far am not suffering. I don't know what advice to give but just feel positive that one day it will sort itself out. x

  • Hi TiredDancer -- I'd echo some of the earlier comments; you will likely need to adjust your level and intensity of dancing as you begin the process of getting rid of this condition. I too had a very fast resolution of pain on 15mg; also those higher doses of steroids can disrupt sleep (though I found I got some sound sleep for the first time in weeks of waking with leg pain and my knees 'locked'). I also would say -- keep going at it nonetheless -- exercise DOES help even though it can be tough to do especially the first 10-15 minutes. I found fitness swimming really helped.

    I also have to say that your fully painfree state is likely to change -- I felt great while at 15 but various levels of pain would return as I started reductions; generally they need to be ridden out for a week or two after each reduction. You can also get flares etc if reductions are too fast (easy to think you are fine and go down too fast). Be sure to read the UK or US rheumatologist guidelines on managing PMR as this will give a good view of how to do reductions; there's also lots of previous discussions on this. The PMRGCAUK website has the guidelines.

    I have a personal theory that keeping up a good, moderate level of exercise when possible, helps to maintain improvements in PMR. I think I had more difficulties when I went through a non-exercising period when my knees got very inflamed.

  • Steph1 have you been back to your rheumatologist? According to the guidelines, if pain is ongoing like this, and not helped at all by steroids or only to a slight degree, they need to check for an alternative diagnosis. You have spent a long time with pain :( ; I think that needs to be checked into.

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