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Polymyalgia Tiredness

Posted , 14 users are following.

muirkelsi
muirkelsi

I have had polymyalgia since November 2013, and started on 15mg of prednisolone. I have gone down gradually, and am now on 5mg which I will take for 8 weeks.

I still have aching shoulders and arms, but not bad as before. My biggest problem is that I am so tired, and find it very hard to have an interest in anything.. I just wish there was a tonic to give me a huge boost, and I can feel normal again.

Sorry to be a moan!

Kind regards,

Grace

0 likes, 31 replies

31 Replies

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  • EileenH
    EileenH muirkelsi

    Posted

    I think you might be better to stick at 5mg for a bit longer than that. One top UK PMR rheumy likes his patients to stick at 5mg for up to 9 months! MrsO negotiated a bit less though!

    Below 7mg or so our bodies have to start to produce their own steroid, cortisol, and the adrenal glands have been on holiday while you were at a higher dose. It isn't the glands themselves that are usually the problem but the very complicated hormone system that governs it all - like your car computer. It swings about a bit, like a pendulum and can take some months to settle down.

    Is it just at 5mg the tirednesss started? Tiredness is a key sign your body needs you to wait a bit and let it catch up - but with a bit of luck you will start to feel better soon. If you feel worse though do go back to the GP and ask them for advice. They might suggest taking a bit more pred for a few weeks and then going back down more slowly.

    • mary68968
      mary68968 EileenH

      Posted

      I just had a thought.  I wonder if many of us should have blood tests for anemia.  I know I am anemic & it causes fatigue as well. Sometimes it's hard to know what to attribute your symptoms to.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Eileen, you have a great memory!  I wish you could have been a fly on the wall at that appointment.  After being back on 5mgs for 10 weeks following the flare necessitating the increase to 10mg, at the next appointment after telling me my bloods were normal again, he advised me to remain on 5 for another 4 months.  I looked at him distrustingly and said "That's going to be nearly 7 months in total, are you saying I'm going to be on 5 for the rest of my days".  His reply "Nooo, I'm just saying that we need to ensure this inflammation stays under control".  Me, "Well can't I stay on 5 a little less than that?"  So he agreed "oh alright then, another 3 months"!  When I think back to that encounter or,  as you call it, "negotiation", I always find myself having a quiet giggle!   
    • EileenH
      EileenH mary68968

      Posted

      In the original blood tests for diagnosing PMR they should have done what is called a full blood count - that is how many red cells, how many white cells and what different sorts, your haemoglobin level (whether you are anaemic) and so on. Most people who have an autoimmune disorder are slightly anaemic (just to be different, I wasn't but I live half way up a mountain which makes a difference too).

      If you are slightly anaemic it shouldn't make a lot of difference, if you are very anaemic they should correct it. If you are worried ask your GP if they think an iron supplement might help - or make sure you are eating the right sort of food.

  • margo25238
    margo25238 muirkelsi

    Posted

    I am on 10 mgs, when i feel fatigue i am fortunate and can take a rest/nap; another annoying symptom i would love to hear about from my PMG buddies is brain fog....

     

    • EileenH
      EileenH margo25238

      Posted

      Yes - typical of both PMR anyway and also of being on pred. It is far worse at higher doses and does improve as you reduce the pred.
  • FlipDover_Aust
    FlipDover_Aust muirkelsi

    Posted

    My doctor tells me that the pred does absolutely nothing to fix the fatigue and had me double my dose of anti-depressants - fixed it in 3 days! I reduced immediately and the fatigue hasn't returned - I was VERY impressed!
  • debbie27473
    debbie27473 muirkelsi

    Posted

    Hi. Yes. I find the heat a real killer these days. I am a real 'outdoorsy' person so this is very upsetting. If I try to walk in the sun I have trouble putting one foot in front of the other. My arms and legs feel like lead weights. Thought it was just me! It is definitely the pmr and not the pred as this started with me the summer before my December diagnosis. Ice cold 'fanta zero' (don't know why but other makes do not have the same effect)! helps a bit. Most days, I feel as if I could just lie down on the pavement and fall asleep! Horrid, especially if you are out with other people. Even my speech goes slurred and I can't focus on a conversation. Oh, to feel 'normal' again! If you find something that helps please let me know. Sorry I have just realised it was jon who has this problem. Take care, Debbie
    • constance.de
      constance.de debbie27473

      Posted

      'Oh to feel normal again' -  Can anyone tell me what that feels like??

      When you have PMR for so long you begin to think THAT is normal!!!

  • margo25238
    margo25238 muirkelsi

    Posted

    'fanta zero'?   never heard of this in the US - what's it like, ice cubes?

    • muirkelsi
      muirkelsi margo25238

      Posted

      It is an orange or lemon energy drink. I have never tasted it, but next time I am grocery shopping, I will buy a few.

      Regards,

      Grace

    • pat73046
      pat73046 margo25238

      Posted

      I can get fanta but I am hooked on Popsicles. Some how I think this is from anemia. Like people eat ice when anemic. I don't tolerate ice cream--good thing considering the calories. Paat
    • EileenH
      EileenH margo25238

      Posted

      I googled Fanta zero USA and it gave me links - Fanta is from Coca Cola and is the second oldest brand. Fanta Zero is the UK version with an artificial sweetner so zero calories - it may have a different name in the US.
  • ladyofharley
    ladyofharley muirkelsi

    Posted

    Hi I have had PMR since Feb 2014 after starting on 15mg of pred and after a lot of trial and error I am now down to 5mg. I had painful arms and legs until recently but ave found doing Pilates has been a great help my instructor has fibromyalgia andsuggested I try a Thai massage as it helps her. Oh my God this.is THE BEST thing for PMR all my aches have gone and if I have a flair up I have a massage I also sleep like a log after. I also have a great rheumatologist in.Dr Jenkinson at Bath who.was. very encouraging and said to keep exercising as when I don't do any I feel worse, he said if I can't run anymore then to. walk which I do everyday. Hope this is of some help to you all. X
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