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Fatigue

Posted , 16 users are following.

muirkelsi
muirkelsi

I have just turned seventy years old,  and had PMR for roughly two years, and manage quite well. My biggest problem, and it really is a problem is that I have absolutely no energy at all. I waken about 6am, and for the first hour I feel fine, and active, but go down hill quickly. I don't even feel like going out either to shop or visit my friends. I get my shopping on line, and would rather email, than visit people.

I am just tired constantly, and although have some aches, I am not in pain.

Does anyone else feel like this? I would just love to feel like doing something.

Regards,

Grace

 

1 like, 19 replies

19 Replies

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  • Mrs.Mac-Canada
    Mrs.Mac-Canada muirkelsi

    Posted

    Hi Grace,

    Like you I have had PMR for about 2 1/2 years.  I didn't notice the fatigue so much before when I was at a low dose (4mg) but, since a flare in January I have been on 10mg and just this week got to 9mg, I have been suffering from fatigue like never before.  I'm good for a day then back to my chair the next.  I read in a recent discussion (sorry can't remember the subject,

    surprise, surprise😕) that some people found eating gluten free helped with their fatigue and I may try it to see if it helps.

    You didn't mention an afternoon nap which is one of the essentials for survival for most of us.

    I'm sure others will be along soon to offer their thoughts since you are definitely not alone with this.

    Hugs, Diana🌸

  • Dave-California
    Dave-California muirkelsi

    Posted

    Hi Grace,

    Well your'e not alone. I'm almost 70 and had PMR for about a year and a half.

    Same as you - I get up early and feel OK - by 9-ish I'm tired and take a nap.

    I work part time still and have arranged it to be from home, so also like you, the computer and a compfortable chair are my friends. And then later in afternoon after lunch - another nap.

    The only thing that I find allows me to get active and do something is either to visit my granddaughter (2 1/2) that really keeps me somewhat active or force myself to go to the gym for a while or shopping with my wife - often this is a mental struggle as I would rather be resting but you have to "force" the body and mind to move - but not too actively or you'll over-do it.

    This 'fatigue' seems to have only started as I tapered below 8-9 mg of pred - I'm now down to 4 mg and fatigue is increasing.

    Let's hope that when we get to remission (pred =0) - activity will 'spring' back into action !

    Feel good and make your mind rule over your body.

    Best

    David

    • EileenH
      EileenH Dave-California

      Posted

      "This 'fatigue' seems to have only started as I tapered below 8-9 mg of pred - I'm now down to 4 mg and fatigue is increasing."

      Then stop reducing for the moment, possibly go back up a bit for a while and let your body catch up. Below 8mg or so is where your body has to start producing cortisol, the natural corticosteroid that is essential for life. It isn't that the adrenal glands are malfunctioning, it is the very complex hormone feedback system that governs it has to get into balance again. Every time you reduce it has to readjust yet again so reducing very slowly at this stage is pretty much essential. The first and major sign of this is fatigue. Push your luck and other things will come along to join in,

      One of the top PMR rheumies in the UK likes to keep his patients at 5mg (as a compromise) for anything up to 9 months to let the body catch up. Another one tells his patients who have got to 8mg/day to take 3 months for every 1mg by doing one month at 8/8/7 repeat, the 2nd month at 8/7/8/7 repeat and the third at 8/7/7 repeat and then a month at 7/7/7 etc. Then the same pattern for the next 1mg.

      Many patients on the forums use the reduction plan you will find in the replies section here:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      This may be slow enough as it is but you can stop and mark time at any point to catch up.

      But for the moment - don't reduce for a bit. You are at a low dose and it is doing far less damage than the dose you started at. Most doctors stop panicking once you are below 7mg which is about the amount the body makes anyway. 

      Christina - think on these things too! It is anywhere below 10mg where your adrenals have to wake up. This return of fatigue is the early signs that your adrenals aren't quite keeping up with what you want to do.

    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Hello Eileen, thanks for that. You have said everything that my rheumatologist said on my last visit which was about 2/3 weeks ago. He said that while it appears to be sporadic and only rarely he's not too concerned but he did say that if in my opinion it appears more often and lasts longer in duration I must get myself to the GP for a check up. Regards, christina 
    • Dave-California
      Dave-California EileenH

      Posted

      Thanks Eileen,

      Yes - I had a feeling that "bod" was out of balance with the different things goin on - fatigue, bad hand joint pain and extended daily joint muscle aches and pains - so I increased form 4 to 5 mg on Sunday and I think I am noticing a slight improvement by today (Wednesday).

      Do you think that if I leave the dose at 5 mg for a month and there is a definate sense of improvement, I should re-start the taper to 4.5 mg or should I leave it a bit longer to allow greater stablization of the natural cortisol ?

      David

    • EileenH
      EileenH Dave-California

      Posted

      Personally I'd hang around at 5mg for a while - it is really a low dose and not at a level to get concerned about. I've been at 4 or 5 for months now - I went down to 4 and was really OK but I knew I felt better at 5mg so I went back. My GP is perfectly happy: "If that's what it needs..." - and she worked in rheumatology for some time before turning into a GP. I definitely have a bit more energy here. 

      There really isn't any point trying to force things at this level. It doesn't get you anywhere. Make sure you feel as good as possible - and then maybe enjoy feeling good for a few months - and then have a stab at a 1/2mg reduction.

    • Dave-California
      Dave-California EileenH

      Posted

      As always - Thanks for your professional, logical thoughts !

      Yes - i will wait a bit longer and see if I get a 'Happy-ier' body.

      David

  • Oregonjohn-UK
    Oregonjohn-UK muirkelsi

    Posted

    Unlike Mrs Mac (that’s why we are all different!!) I only started to feel the fatigue when I got down to the lower doses around 10 mg.  At 30 - 15 mg it flatten everything and I felt so much better than before preds and the 'miracle' of the pain 'disappearing'.  I did find taking an afternoon nap did help but I still nod off waching TV in the evenings - have not resolved that one yet!
  • tina-uk_cwall
    tina-uk_cwall muirkelsi

    Posted

    Hello grace, I have diagnosed PMR since December 2013, with undiagnosed PMR since the September 2013. When on 15, 12.5, 10, 9 mgs of preds I felt great. However I definately noticed fatigue creeping in when I began my 8.5 taper and now I am on 8 mgs I definately get fatigued much quicker. No pain or stiffness, infact I'm doing very well, but just fatigue. I can be fine one minute then exhausted the next and this exhaustion can last for a few minutes to half an hour. All the best, Christina 
  • judytal
    judytal muirkelsi

    Posted

    Hi Grace,  I'm now taking 6 mg.  some days I have some grief in neck and shoulders but the biggest challenge is the fatigue.  If I try to exercise I usually suffer afterwards even doing minimal things... I rode the bike for 7 mins and my quads were sore for 3 days!!  No resistance on the bike just nice and easy.  

    My days are so inconsistent... Haven't had a good , comfortable day in awhile...  Woke this morning at  6 .. Walked the dogs which took a great deal of effort... Sat and tried to do some crocheting .. Fell asleep.  

    Oh, Grace, I'm 72 and was active and worked out everyday  ..enjoyed getting out and moving!! Soooo life is certainly different.  

    You are not alone!!!  Hang in there ... I'm new so some days are a bit easier...

    be kind to yourself...   Judy

  • pauline36422
    pauline36422 muirkelsi

    Posted

    i too am 72,   down to 1 .5  mg   with having to have a nanna   nap.   only1 hour in the afternoon   never done  that before...  no pain  asin pmr pain.   but my knees arnt too good.    but its a differant pain not  like pmr , the  dragging pain  down   buttocks and thighs   just in knees only  so i am begining to think its   athritis  any advise
    • tina-uk_cwall
      tina-uk_cwall pauline36422

      Posted

      Hello Pauline, go and see your GP about the pain in your knees, if he diagnoses arthritis then maybe he can give you something to ease the pain. Regards, Christina 
  • tony80950
    tony80950 muirkelsi

    Posted

    Among other things, fatigue and lack of energy have been a major problem for me also.  From others I have been in communication with, this is not uncommon.  Recently I started using a CPAP to sleep better and I find that I have a little more energy.  I had been down to 15mg of Pred but the pains were awful so we went up to 25 for 10 days and now am at 20.  Most of the aches and pains are very manageable.  I am going down to 17.5 after 2 weeks at 20 and try to do some light lifecycling.  When I was down to 15 I was ready for naps within 30 minutes of waking up and would have 3-4 30 to 1 hour naps a day.  Now I do one nap a day and it is a light one.  Hope that helps.

    Good Luck

    Tony

    • tina-uk_cwall
      tina-uk_cwall tony80950

      Posted

      Hi tony, remember to stay on each dose long enough for the inflamation to be kept under control and mores the point until you feel a real benefit before even thinking about reducing. Regards, christina 
  • FlipDover_Aust
    FlipDover_Aust muirkelsi

    Posted

    If you are like me it's not so much fatigue now I'm on pred but lethagy and malaise. I'm wondering if it's depression. 
    • barbara75814
      barbara75814 FlipDover_Aust

      Posted

      I think you're on to something. However, I've noticed that many who post here are resistant to references to trauma or depression as possible aspects of PMR etiology. For myself, I'm quite sure what extreme, continuing stress has brought this autoimmune condition into my own life.

      Knowledge is power. I'm trying to stay as calm and centered as I can through the storm of PMR, and much luck to you--

      .

      Much luck to you, flipover 

       

      However, everybody is different, and I believe everybody's opinions are vital to this forum's helpfulness--

    • FlipDover_Aust
      FlipDover_Aust barbara75814

      Posted

      Agreed - depression does go hand in hand with losing your health!

      I also agree wholeheartedly that long term stress brought on (or at least strongly contributed to) my PMR.

      After a week of feeling like the world was ending I'm now back to my (now) usual self.

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