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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

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  • janet08828
    janet08828 muirkelsi

    Posted

    Hi Grace -

    That is a problem I recognise only to well unfortunately - but I have learnt to accept that when I am tired and uninterested I have a rest or a little siesta (sounds more romantic?!) and take a time out -  it is an absolute pain but I am convinvced that the real me will be back once the pred. is down to a maintenance dose - hopefully this year sometime - in the meantime I am wearing out the "patience is a virtue" mantra.

    The sun shining seems to give me an extra boost.

    • jon02168
      jon02168 janet08828

      Posted

      I just wanted to comment about your thought on the sunshine. I have just the opposite thought. It seems that exposure to the sun (for me) causes me more problems. I also have vitiligo so I have no pigment left to filter the sun rays and have to wear long sleeve shirts, a hat, and gloves year round...even in the hot Texas summers. I just had a sunburn on my neck which resulted in massive hives (urticaria) and angioedema. I am currently on 3mg of Prednisone which does almost nothing for me and the amount of time I can work in any day is becoming greatly diminished.

      Does sun exposure cause problems for anyone else with PMR?

      Thanks.

    • EileenH
      EileenH jon02168

      Posted

      If you are on 3mg and it is doing nothing - you are on too low a dose. You need what you need to manage the symptoms and you cannot force a reduction to below that. You cannot reduce to a timetable - you reduce in accordance with the symptoms, if they come back you go back to the last dose you felt well at: you are looking for the lowest dose that manages the symptoms and not reducing relentlessly to zero. 

      Is it certain you have (just) PMR? There are other autoimmune disorders that cause similar symptoms but are something a bit more. For example, Lupus causes sun-sensitivity and sun leads to recurrence of symptoms.

    • jon02168
      jon02168 EileenH

      Posted

      Hi Eileen,

      Yes, I agree that the dose is too low. I felt best at 7-8mg. When I got to five things started going down hill. The Rheumy told me to stay on 3mg for another month and then reduce to 2 (which will be at the end of this month). I do have sleep issues and took drugs to try to help me sleep and also had to take drugs to stay awake in the day. Also, vitiligo, adrenal insuffiency, thyroid problems run in my family but my labs are always good. I have been tested for so many things. My daughter has Lupus and my second daughter tested positive on the ANA last year. I have arthritis, brain fog (terrible) as well. DRs in the US don't seem to have as good an understanding about autoimmune disease as do the Drs in the UK. My daughter lived for several years in ABerdeen, Scotland and had a great DR there that was very helpful and was able to manage the disease for her.

      Thanks.

    • EileenH
      EileenH jon02168

      Posted

      Then you need to go back to 7mg and start over! If your rheumy won't discuss it either find another rheumy (I know, I gather it's as difficult in the US as the UK!) or open talks with your PCP. I can give you links for articles from experts if you need them.

      And a family history like that - hmmm. Not just PMR I'd hypothesise...

    • pat73046
      pat73046 EileenH

      Posted

      Hi EileenH, I just wanted to ask you about profuse sweating with any axertion. I sweat on my head ,back,arms, face,And chest profusely -- drips in my eyes. I take frequent breaks. Took five tries to finish vacumming LR and this am cleared sdishes and added water to sink and had to sit down. Also have rapid breathing and shortness of breath. I know I am anemic-- hgb.= 10.5 last checked. Could this be from pred. Side effects -I am on 15mg daily. Thank you. Pat
    • pat73046
      pat73046

      Posted

      Sorry meant to say I am on multivitamin with iron. Upsets my stomach but I am taking it.Thank you Pat
    • EileenH
      EileenH pat73046

      Posted

      It could be the PMR or it could be the pred - I had that problem due to the PMR before being put on pred. I still have that and I'm down to 4mg pred - but I think it was worse on higher pred. Not that I do much vacuuming, it goes straight for my back so more than a couple of minutes is asking for trouble.

      If it is the PMR then it is because your muscles are intolerant of exercise - which means your body is having to work far harder to do anything. Think how you would have felt trying to, say, cycle like Chris Hoy in the Olympics. Now imagine doing the vacuuming at that sort of level - that's what it feels like to your body with PMR.

      But with a Hb like that - that isn't helping. Hasn't your doctor offered anything? Whatever sort of iron supplement they used to give us 30 years ago when pregnant really upset my stomach - when I told them at the clinic they admitted they usually used the cheapest and gave me a different sort and I was fine. Ask the pharmacist. Are you also on AdCal or calceos or something - the calcium and vit D supplement? If so, be careful what supplement you use. They aren't just vitamins, some have calcium and you mustn't take more calcium that the AdCal - more vit D doesn't hurt though. 

       

    • pat73046
      pat73046 EileenH

      Posted

      I just wrote you a long reply and the phone rang -lost all of it . Oh,well. I wanted to thank you for helping me understand what is going on with the back and buttock muscles. The cycling explanation really helped. I will take it easier. You are such a great help.!!
    • EileenH
      EileenH pat73046

      Posted

      If you lose your connection in the middle of a post try clicking on the back arrow at the top left corner of the screen - it should reload the last page that was up and you will have what you had written in view.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey muirkelsi

    Posted

    Hi Grace, don't apologise for having a "moan", we all do it from time to time to get it off our chest!

    It is a little unusual to be feeling "so tired" on doses as low as 5mg.  It could simply mean that you are on too low a dose for you at present, especially as you say you are also experiencing aching shoulders and arms.  It might be wise for you to increase the dose slightly, say to 7mg or 7.5mg for a few days - if you feel less tired and the aching improves, then you will have your answer, and you will need to remain at that dose for a good few weeks, then perhaps try reducing just in half mg steps and see if that is more successful.  However, if you are taking only enteric-coated Pred, then they shouldn't be cut.  Only the white uncoated tablets can be cut in half. 

    • muirkelsi
      muirkelsi MrsO-UK_Surrey

      Posted

      Thank you Mrs O,

      I will start tomorrow at 7mg, and let you know how I get on.

      Regards,

      Grace

  • pat73046
    pat73046 muirkelsi

    Posted

    I had PMR in 2008 and now it is back. I remember being tired before but husband was some help now he is ill and expects me to do every thing. I have never felt so tired. Some of the problem is broken sleep because he will wake me to tell me he can' t sleep. I try to rest between chores during the day but I know what you mean. Fixing supper or doing laundry seems like climbing a mountain. Sorry to complain . try to do things for short periods. I also take vitamins and other supplements such as fish oil,flaxseed oil,Ca+,K+,and try to eat healthy. Pat
    • muirkelsi
      muirkelsi pat73046

      Posted

      Thank you Pat, I am just getting up enough energy to start dinner. My husband is very good when I am in the kitchen, so I am going to M&S and will buy pre cooked for a week. Looking forward to a break!!

      Grace

    • constance.de
      constance.de muirkelsi

      Posted

      I'm still tired 4 years on with PMR.  However, I have stopped worrying about it and just sleep when I have to.

      Envy you going to M&S.  That's the one shop I miss in England, especially the 'only food' stores.

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