1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

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

Next
  • ptolemy
    ptolemy Sjohn

    Posted

    How awful to be taken off pred when it was obviously helping the pain, it sounds like a nightmare. When you get to around 7.5mg of pred the adrenal glands have to start working again, they have been relying on the pred to produce cortisol at the higher doses and so did not bother to do any work themselves.  Reducing to lower doses when the adrenal glands start to wake up can cause fatigue and make you feel washed out. All you can really do is give into it I find. You could ask you doctor for a test to see if your adrenal glands are waking up OK. 
    • Sjohn
      Sjohn ptolemy

      Posted

      Thanks so much for replying!  I thought it might be that, but it is so hard to surrender to the fatigue! Hope it doesn't take too long, I am getting a 9 week old puppy on Thursday.  Hope he likes to rest too!
    • ptolemy
      ptolemy Sjohn

      Posted

      How lovely to have a puppy. I hope he does not need too much exercise. My Golden Retriever used to exhaust me before PMR. He used to sit in front of the TV so I could not see it and when I asked him to move he used to jump on top of me, so I felt I was being crushed to death! 
    • Sjohn
      Sjohn

      Posted

      My puppy is small and will only get to about 13 pounds, but he is a puppy and needs a hazard free house which is my biggest concern.  I just don't seem to make much headway on getting housework done.  I have a puppy pen set up, though for managed chaos!  My little guy is a Coton de Tulear, very cheerful and sweet and absolutely a companion dog.  Let us hope! I posted a photo enjoy!
    • ptolemy
      ptolemy Sjohn

      Posted

      Orrrr, isn't he lovely. You are also not in danger of having thirty two kilos of a furry, yellow, slobbering creature leaping on you! 
    • Danrower
      Danrower Sjohn

      Posted

      What an adorable dog. I relate to the fatigue, but after 18 months of PMR, down to 5 mg, all swelling in feet and ankles gone in the last few weeks, and my energy level is increasing. For me there is a correlation between ache/pain/ fatigue. I became so used to the fatigue, now I'm feeling better, I realize that the fatigue was like dragging a stone (14 lbs) weight ball and chain. 

      There were many days I couldn't even finish cleaning kitchen.

      I take it you're in USA. East central Florida here.

       

    • tony80950
      tony80950 Danrower

      Posted

      Other end of the country, Spokane, Washington.  Glad to hear you are doing better, music to my ears.
    • Sjohn
      Sjohn Danrower

      Posted

      Thanks Dan, I'm in love with him already but I don't get him unitl Thursday.  I am in Minnesota.  I like what you said on your profile about getting info her rather than the docs.  My current rheumy is great but before that--argh!   I work in a research area of a University and have read journal articles and the latest research articles.  This is not rocket science, the docs have no excuse for not getting this right!  But as for the cause or cure, that is another subject altogether!  I don't get my kitchen clean many days.  It is a real mess most of the week but I do manage to eat.
  • tavidu
    tavidu Sjohn

    Posted

    Hi Sjohn. ptolemy is quite right but coming down so quickly has probably caused your problem. i have always thought that from around 10mg a day a very very slow reduction is needed to allow the adrenals to start functioning on their own again, this could take well over a year time wise if not longer. You may need to up your preds for a while and begin the slow drop down again once you have overcome the fatigue (for your sake and that of the puppy who will need regular walks). Good luck with both.
    • Sjohn
      Sjohn tavidu

      Posted

      Thanks so much!  I'll have to check with my Rheumatologist. Maybe if I just stay at 7 for a while it will resolve?
    • ptolemy
      ptolemy Sjohn

      Posted

      If you feel stable and have no pain, staying on 7mg should be fine. A lot of people spend several months on 5mg. 
    • Sjohn
      Sjohn ptolemy

      Posted

      Thanks, maybe an extra month or two then down by half milligrams after that.  I sure don't want to go through this again!
  • judytal
    judytal Sjohn

    Posted

    Sjohn,

      OMG  I wanted to jump into the computer.  I hear you, I hear you....  I've had PMR for 14 months.  Fatigue, depression and more fatigue were my biggest challenges.  However, it is getting better slowly.  I'm down to 2mg and constantly heard from physicians to reduce reduce and reduce.....  I've been following the Dead Slow program... I sent the physicians a copy...

      I have two dogs and they wonder why they don't go on their long walks any more.  Forget the housework....  I do get the bathroom cleaned but it takes hours now where it used to take days.  I used to have to lie down when I finished taking a shower... better now.  

      I'm truly sorry you have suffered and feel so badly and your physician did not do his job.... good for you to change .... I did too however the new one was just as bad....  don't know what's wrong with these people.  Do they really think we want to be on , of all drugs, Predinsone !!!! 

    Ok, hang in there it will get better.   

    judy

    • Sjohn
      Sjohn judytal

      Posted

      Thank you so much.  Signing up for this has been the best thing I have done!  I have been feeling that I am just lazy and indulgent, or depressed (big surprise!) and did not realize that my symptoms are very typical! Your support means so much to me!  Thank you all!!!!!
  • tony80950
    tony80950 Sjohn

    Posted

    the fatigue, lack of energy and stamina, unfortunately, are not uncommon.  I started feeling the effects of PMR about 2 years ago, not having the energy I used to have as a tennis official.  Within 6 months I could no longer do my job on court.  At that point I was on 25mg of pred.  Currently, I am down to 16mg, had slight improvement in energy but not stamina.  Exercising seems to be of no use, I cant do any better than minimum on my life cycle and walking, to any degree, makes me have to stop and catch my breath.  It is very frustrating, knowing that this could last for years, but I hope that it will be soon so I can work again.  Good luck and keep us posted
    • Sjohn
      Sjohn tony80950

      Posted

      What a total drag for you!!!  I have not been all that fit in the first place but this must be real hell for you!  My first rheumy had a lot to say about exercise as did an internist in the same care system. Oh, they think they know so much!!  I actually joined a health club for the pool and hot tub. Walking in the pool felt great, but boy did I pay later. The hot tub helped somewhat with the pain but only while I was in there and for a but after, nothing long-term.
    • tony80950
      tony80950 Sjohn

      Posted

      As I have learned from primarily this web site, GP's and rheumy's know as little about this condition as we do.  Once I got on this site I felt I knew more about it than the doctors.  My new GP, who I have a lot of trust in, basically has concurred with me that except for using pred, to relieve the pain, there is very little that can be done for PMR.  Former doctors played around with pred reductions, droping the dosage to much and too fast, puting me back at step one.  This doctor has me dropping 1mg per month and so far so good.  Not much more to say but hang in there and dont push things.
    • Sjohn
      Sjohn tony80950

      Posted

      There is a reason the say "practicing medicine" confused  Since this disease only happens to older folks and isn't life-threatening, there is probably not much research going on.  I bet it will be discovered one day to be a virus, like ulcers!  Meanwhile I guess we just deal with it as best we can.
    • Anhaga
      Anhaga tony80950

      Posted

      I think the best exercise is simply walking.  You aren't exposed to germs you might be in a pool.  Yuo can go at your own pace for as long or short a distance as you like, several times a day if you want, especially if you can only manage short walks.  And getting outside in the open air is also really helpful.  Hope you feel better soon.
    • Sjohn
      Sjohn Anhaga

      Posted

      Thanks sounds like good advice!
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.