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Ongoing fatigue

Posted , 15 users are following.

Sjohn
Sjohn

I just have no energy and motivation. Is this typical?  I thought since I am pretty much pain free, I'd be back to "normal" whatever that is!rolleyes  I have entire weekends lately where I do next to nothing and just spend days laying around on the couch.  This is especially true if I exert myself even a bit!

I've been treated for PMR for several months now and down to 7 mg prednisone.  I started a year and a half ago and responded to the prednisone but started to be symptomatic as around 7 mg and the rheumy decided it couldn't be PMR. He decided I had fibromyalgia which made no sense at all!  I argued, but he wouldn't listen and took me completely off prednisone. After months of considerable pain and suffering with nothing to help but naproxin, I changed rheumatologists. I could barely walk when I went to the new rheumy and fortunately she got it right and I'm on my way.

I am miserable that I cannot get going on housework or anything else without just being entirely wiped out!  I get depressed because of this or maybe I am depressed and then get fatigued?  Not sure about much anymore.

Thanks for your sharing your thoughts and experiences!

1 like, 37 replies

37 Replies

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  • FlipDover_Aust
    FlipDover_Aust Sjohn

    Posted

    Absolutely typical! I feel the same way!

    I am only stiff in the mornings until the pred kicks in, but I still have no interest in doing things - and that's just not me! I can sit around all weekend and do nothing (except feel guilty about not doing anything!).

    I WANT to get motivated, I WANT to do stuff, but I just couldn't be bothered!

    Probably not helped by the fact I just bought the 'most comfortable chair in the world'! (Google "The Original Cloud 9 Hanging Chair" if you're interested in seeing what one looks like). It's warming up here in Australia - perfect for sitting on the deck with a cold drink.

  • suesing
    suesing Sjohn

    Posted

    I'm so sorry to hear that you've been having such a rough time.  You will have gathered by now that we all suffer with dreadful fatigue as much as the pain from PMR.  I find that fatigue is quite different from just feeling exhausted from natural causes and very difficult to explain to people who have never experienced it. Go slow on the Pred' reduction, pace yourself, even when you feel you have more energy and have faith that there will  be a time when you begin to feel 'normal' again.
    • Sjohn
      Sjohn suesing

      Posted

      Yes, this fatigue is very different. It's like nothing is worth it; it's just too much trouble to do much of anything.  I do go to work each day but find I get to a point early in my day where my energy is just gone and just cannot make myself be productive.  Then I go home and get reacquainted with my couch!  Definitely not at all my former, dynamic self.
    • ptolemy
      ptolemy Sjohn

      Posted

      When I say I have fatigue people think it is tiredness and say why don't you just get more sleep. It is actually quite difficult to explain that it is true fatigue not tiredness. 
  • judytal
    judytal Sjohn

    Posted

    I hear you when you say fatigue!!  I hate when people say "Oh you're tired"  It is NOT tired.  Your whole body just can't move or wants to move.  My legs don't want to move or my arms don't want to  move... my head is ..... can't explain.  But it is not tired!! 

    I push myself ....  I push and push everyday...

    • julian.
      julian. judytal

      Posted

      yup.

      its not tired. And I struggle calling it fatigue.

      The inner push required just to get started, the poor concentration when I do get started, and the continual inner reminding to keep going and finish are almost completely overwhelming.

      I have a bit of success pacing myself. I chop tasks down to smaller tasks. Anything that looks like less than half an hour seems more achievable. Easier to get started, easier to keep going. Then I rest.

  • mary77000
    mary77000 Sjohn

    Posted

    I so sympathise but also great to hear we're not alone. I feel some days as some one has pulled out my batteries and I'm at zero!  Lie on the bed trying to work out why why why, I also suffer with migraines so it gets confusing. I wonder if there is an alternative to the prednisole, I'm again down to 8mg..slow slow slow but four years up nd down. Has anyone found any other medication. Best wishes to you all. 
  • Silver49
    Silver49 Sjohn

    Posted

    I recognise what you are saying. For the last while my motivation has improved greatly and the tiredness and pain have been less. I have my grandchildren staying this week and I experienced a lot of pain on Sunday after they arrived and again on Monday. It was a bit easier yesterday but my husband took the children to the play area to make it easier for me when I was in the farm shop. I bought more than I intended and when I came out they were so far away with the car key I could have sat down in the car park and wept. I waited but in the end had to go across carrying the shopping and then take it back to the car. Sounds wimpish but you'll know what I mean. I think the pain has been exacerbated by preparing for the children's arrival although I thought I had managed it in stages!! Yes. This does come back to bite us. I don't know how people can manage to work. I take my hat off to those who do but it must be difficult and painful. I thought I had this down to a fine art and I do when there are no extra people to consider. I do hope your motivation returns soon but I guess there is no way of knowing when!
  • Sjohn
    Sjohn

    Posted

    Thanks so much everyone for all of your support and info!  This helps so very much and I wish I had signed in 18 months ago!  Due to the info you all have given me, I called my doctor's office and she said I should go back to 8 mg!  Yeah!  My little puppy comes tomorrow so not a minute too soon.

    It is so easy to overdo without even know it!  I do a small amount of anything then I hurt and lie down and sometimes sleep for hours!  But I am grateful to the prednisone since most of the time my pain is minimal unless I do something!

     

  • IssyR
    IssyR Sjohn

    Posted

    Hi Sjohn,

    I've been treated for PMR since last September. I have also had an awful lot happen to me since just before (major op) and after (husband was unfaithful and mum died) so i had plenty of reason to be depressed and was and still am being treated for this...antidepressants and councselling. But i appear to be getting worse instead of better. I am currently on 7mg pred, my doc has tried twice for me to go to 6mg but i can't function at that so as i say i'm back to 7mg...reading everyones posts i realise theres a theme runs through of exhaustion and fatigue which although i can't seem to shift it i'm back at work but it leaves me very little energy for anything else. My grandkids come for a sleepover at the weekend but i am definitely toiling...your posts definitely make me feel better that i'm not imagining it or on my own. My doctor is very nice but i don't feel he understands just how debilitating the fatigue is. Anyway i'm glad to know i'm not alone xxxxx

    • Silver49
      Silver49 IssyR

      Posted

      You have a lot on your plate. No wonder you have no energy. Aside from all that you have been and are going through you are working and having your grandchildren for a sleepover. I don't know how you are managing to cope. I think you need to look after yourself and take time to rest as much as you can. Do try to put yourself first for a change. It may help you feel less exhausted if you can rest as you are obviously doing more than your body can manage at present. Do you have to work or can you take sick leave? I am sure someone else will come along with other suggestions.
  • IssyR
    IssyR Sjohn

    Posted

    Hi Silver49

    Thankyou for your reply. I'm absolutely sure you're right. I only work between 24-30hrs just started a new job in April after a year on sick leave. When i started back to work i expected it to be exhausting but i was so pleased with myself it gave me a real boost. The last 6wks have just been a downward spiral phsically and emotionally..completely overwhelmed. I get really frustrated as it feels like the doctor thinks it's all in my head but i've always been relatively happy optimistic kind of person...i feel like i don't recognise myself...used to enjoy my days off pottering, doing my housework now it's a miracle if i've tidied up after the kids before they come back the next weekend. Anyway thanks for replying, Have a great daycry 

    • Silver49
      Silver49 IssyR

      Posted

      I understand exactly what you mean. My grandchildren go home tomorrow   and I love having them here but I do the minimum that I have to and still it's tiring and painful. I don't know how you must feel trying to work as well. Like you I could manage all that but not now. When I think of what I used to do I also feel like a different person. I have had to rest and even then the pain has returned though not quite to the same extent as when I was diagnosed. The children are so used to me multi-tasking that even they have noticed and I hate having to say I need to have a rest. We have managed to bake and I have shown my husband how to bake so he is now also teaching our grandchildren. We play cards, lexicon , board games etc. which we all enjoy. It keeps them off their devices and I can sit. I have to think quite hard to see what we can all do without resorting to TV. I like to keep their minds and bodies active but I am struggling this week. I think between 24-30 hours is a lot work and needs stamina. I guess it will be difficult to cut these hours as it's a new job. I don't know how long it is since your mum died but I counselled people who had been bereaved and you need to be kind to yourself. If you can, give yourself treats in whatever form gives you some enjoyment. I think you need lots of hugs for a start. Children won't be too bothered about an untidy house as long as they have love and are fed and watered. Please don't be too hard on yourself. Sometimes we just have to lower our standards for self preservation!!
    • FlipDover_Aust
      FlipDover_Aust IssyR

      Posted

      Please, be kind to yourself.

      Sounds like you are just trying to do too much - feel good - do more = too much.

  • IssyR
    IssyR Sjohn

    Posted

    Aww thankyou so much for your lovely kind comments. It's so great to talk to folk who know exactly what i'm talking about. It's hard to describe how it feels to someone (everyone) who doesn't have it without feeling like a hypochondriac. Can i ask you, has your doctor ever said fatigue is part of PMR mine certainly hasn't but to be honest i feel i never get very much information from him it's not that i wouldn't ask it's the silly wee 10min slot, there just never seems to be enough time...frustrating to say the least...i am full on with the grandkids as they're only 5,6,7 and are used to and love all our adventures. Anyway look after yourselves (says me) lol and thanks for your input xx
    • FlipDover_Aust
      FlipDover_Aust IssyR

      Posted

      Fatigue is a MAJOR part of PMR - I can't believe he didn't mention it. Just goes to show we really do need to take control of our own health and find out everything we can for ourselves.
    • Silver49
      Silver49 IssyR

      Posted

      That's a lot of work at the ages your grandchildren are. I'm sure they love being with you. Mine are 8 and 11, so much easier. It is great having time with grandchildren but I think you need to look after yourself too. I don't bother describing how I am as others just  say they know what I mean as they have aches and pains too!!!!! 😳😳I wish!
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