PMR 'Bad Day'

Posted , 6 users are following.

Today I think I'm having a bad day! Not a flare up, but just a bad day. A month into my diagnosis and a month on 20 mg pred, all my pain and awful stiffness is under control but today my muscles are aching and a bit of cramp in my calves, eyes are burning with dryness and I feel as if I'm going to have a cold!! Has anyone suffered the same when their main symptoms are under control, is this is what PMR is all about?? Some good days and some not so good days??

2 likes, 10 replies

10 Replies

  • Posted

    Afraid so, almost certainly, yes. Of course - you may BE about to get a cold! 

    Try getting some artificial tears from the chemist - dry eyes often come along with autoimmune disorders and there are several versions that will soothe your eyes. My favourite was a liposome spray called Clarymist I think - don't know if it is still available and it is expensive. You just spray it onto your closed eyelids. Others are more like gels and can make your eyes a bit smeary so use them at night. Your GP may even be kind enough to prescribe something for you.

    And what were you doing yesterday or the day before? It is all too easy to forget and think "I'll just manage a bit more..." and then you hit a brick wall and realise what you have done a bit too late. 

    However - don't despair! As time goes on you have fewer such bad days - as long as you behave!

    • Posted

      Thank you Eileen,, it's great to have friends on here who have had more experience with PMR than me,, to know it's part of  the whole disease! Annoyingly!!, xx
  • Posted

    Eileen comments sum it up - just when you think you are 'on top' you tend to do more and then have to pay for itmad.  One thing I learnt was you have to pace yourself and not overdo it.  Remember the Tortoise and the Hare?

    Remember you will get bettersmile

    • Posted

      thank you for you encouragement that things will get better!! I've overdone the simple things that I thought I could cope with but obviously not! 😳😳
    • Posted

      I think that should be the slogan for our cause...'just when you think you are 'on top' you tend to do more and then you have to pay for it.' That describes it to a tee. I have been DX'd for over 14 months and I can attest to that fact. You feel good for once and then overdo it...only to be knocked back down. UGH!
  • Posted

    Hi Andrea, I know exactly where you are.  I was diagnosed with PMR November '14 and prescribed 20mg of pred.  I could not believe how these tiny tablets could do so much in the way of pain relief.  I couldn't go back to that pain and have told my gp on a scale of 1 to 10  -  10 being the highest level of pain I would say mine was 15.  But just like yourself I was doing little things and bits and bobs and then next day or too I started to feel so weak, dizzy, even getting up from a chair I felt the room spinning.  I felt dreadful but as others have said on this forum you just may have over done it.  Also it does get better.  I am down to 15mg and hopefully this weekend am going to try and go down to 12.5mg of pred. hopefully no flare ups.  It is very normal to have good days and not so good days.  If you can, pace yourself, it really does work and you would think I would know better having been diagnosed 14 years ago with ME/CFS but not so.  You will get through this, stick around and I promise it will get easier.  You take it easy now.    Regards Pat
    • Posted

      Thank you Pat! It's nice to have someone else who's had the same experience to compare! It's almost a carbon copy sometimes,,, when will we learn? Hahaha xx
  • Posted

    Ywheni was first diagnosed and put on a fairly high dose of Pred I felt so good that within a week I got myself a new job and started to work full time for a very large company . This was amazing because had always been self employed all my life!

    it lasted 7 months and the work was hard! I thought I had cured myself by August and was down to 5 Preds a day. I was then told by Doc that I may as well come off. Lost my job and PMR stared to come back with a vengeance . Took 4 months and a wheelchair and some pretty strong words to get reinstated with 

    Preds again. During the worst times I had four days in bed for the first time in my life. It was the best thing I had done in a year so don't be afraid to take 'time out' from PMR and have a couple of days bed rest. Do all your reading and writing or thinking and forget any physical effort. My husband has PPMS so cannot look after me but I took a pump flask of water and a picnic cooler with sandwiches and fruit with me so was OK. Had I not done this a couple of times I would not have managed at all those four months. Now when I have a bad day I have a rest day after. I have also changed my sleeping times and go to bed at 8.30 pm most nights. Green vegetable powder in juice makes me sleep well. The longer you sleep the less you have bad days.  The other wonderful thing that is happening after eighteen months is that the horrible psoriasis like spots on my upper arms are beginning to disappear at last. They don't hurt any more and have dried up suddenly.

    • Posted

      Thank you Christine! I myself have gone L-for-leather since being put in pred,,it's wonderful and I think I'm not I'll!,,, until this week and it seemed my body went into shut down,,, rest rest and rest again I think is the order of the day! X
    • Posted

      The pred is only managing the symptoms - it has done NOTHING about the underlying illness and that is still chugging away in the background. You are still a person with an illness, just hopefully it isn't handicapping you as much. The turbo charging you get with pred sometimes is a bit of a pest - I never had it, I just felt an awful lot more able to do things because it didn't hurt! But I too went to bed by 9pm at the latest and struggled to get out at 8.30.

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