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Sorry if I am repeating my self

Posted , 12 users are following.

carol16456
carol16456

When I started this trip on the PMR trudge in November 15.After a few weeks when the pain had subsided I felt reasonably good .i started at 15 mg and now down to 11.5 .Occasionally I get the variouse withdrawal ache and pains when dropping pred at half  mg every 2to 3 weeks ,but I am surprised that I feel so drained .I thought after the initial withdrawal that I would feel reasonably back to normal until the next half mg drop .But to day by day I feel as though I am walking through slow drying cement .Does there come a level when I will get some energy going again as I think I did upto a couple of month at the beginning of all this .I sorry to bother ,who I feel are now my friend but feel so tired today and weepy ,hopefully will feel better tomorrow..Due to see Docter 4to 5 weeks for next blood test result but wonder if it's all par.for the course or should I check it out. Hope here from one of you please Carol

3 likes, 22 replies

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  • Pamros
    Pamros carol16456

    Posted

    Carol,I'm sorry I am not replying with anything useful, as I would like to know the answer myself. I am down to 5.5mg but feel as if I've just climbed Killimanjaro I am so tired. People tend to say " I'm really tired all the time", but this is different, I feel completely wiped out, sounds like you do too. I sympathise. Pam
  • tony80950
    tony80950 carol16456

    Posted

    Carol:

    Unfortunately the lack of energy and lack of stamina are side effects of PMR.  I am a tennis official and, except for working as a chair umpire i've had to quit working because of the inability to run even short distances.  I'm not sure whether there is a connection of this problem with the reduction of pred or whether it is just part of the PMR condition.  I'm not sure anyone can answer that one but I can say you are not alone with this condition.  

    Dont worry about repeating yourself.  As I have found, spelling out the conditions help releive the frustrations of PMR.  This chat room has been a great comfort to me, understanding the disease better and knowing i'm not alone.  Keep writing out your thoughts and don't worry about repeating yourself.

    Good luck

    Tony

  • Oregonjohn-UK
    Oregonjohn-UK carol16456

    Posted

    Hi Carol - Same here I'm down to 8 mg and I was fit pre PMR.  I thought it would improve as I reduced but just as bad.  Sorry to be a bearer of bad news - I suspect it's the PMR it's self.
  • constance.de
    constance.de carol16456

    Posted

    Hallo Carol.  Tiredness is one of the things I have felt difficult to accept.  I have had PMR for 4 years, and I'm STILL tired.  Mind you I AM 75 years old now so I don't know how much of it is old age!!!  You can take a tablet to make you sleep, but does anyone know of a tablet to keep you awake???? Fresh air, walking, etc etc don't seem to do it!
  • MrsO-UK_Surrey
    MrsO-UK_Surrey carol16456

    Posted

    Carol, the fatigue is unfortunately part and parcel of both the inflammation coursing through your body and the steroids themselves.  I can remember being on an incredible high shortly after starting 40mgs Pred.  However, that was short-lived and the fatigue used to wipe me out.  I have been known to fall asleep when at a friend's house for dinner.  I learned never to arrange anything two days running, and I know others who would have a duvet day following an outing on the previous day.  Feeling weepy is also up there with the symptoms/side effects, and I can remember my emotions being all over the place.  Your body is coping with a serious auto immune condition, plus it is also adapting to the steroids and then to any reduction in dose.  You WILL get better and you will have good days but always remember never to overdo things on those good days.  There is unfortunatel no fast miracle cure, we just have to learn to go with the flow, knowing that better days are ahead, and sooner if we really give PMR lots of respect!
    • wendy5050
      wendy5050 MrsO-UK_Surrey

      Posted

      Hi Mrs O

      You are not alone. I am down to 7mg and it's tough going. Feel I have to get my hiking boots on just to do small things. I have a sore throat as well at the moment which doesn't help. I think I will return to 1 day out and 1 at home. It has helped me in the past. I agree it's hard to plan ahead, the trick being not to be too hard on yourself. Big hug

      Wendy

    • EileenH
      EileenH wendy5050

      Posted

      Just for the record. MrsO is now able to arrange to do things to days running I suspect! 

      She is the person on this site who we all want to emulate: she got to Club Zero some time ago! It does happen, far more than you might think looking at the contributor's posts. She has stuck around to preach the gospel of planning ahead and RESTING!!!

      There is one lady who has had PMR for several years who is currently on 0.5mg and posting photos on Facebook of her holiday in Egypt. Yesterday she rode camels and horses and a quad bike after snorkelling the day before. Not quite sure what she'd done the day before - except working her way through the cocktal menu redface

      There really is life after PMR and you don't always have to be totally off pred. I'm down to 4mg and I'm off to China later this year and have a packed 12 days programme including the Wall, the Warriors and a cruise down the Yangtse amongst other gems (and some work). I'm fully confident I shall survive...

    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Eileen, I can actually do things 3 days running!biggrin  Can't wait for the lady to get back from Egypt with the camel photos.

      So hang on in there everyone - I just hang around to let you all know there's life at the end of both PMR and GCA; in fact, having got through the struggles, life seems even more precious - you wait.cool

    • Mrs.Mac-Canada
      Mrs.Mac-Canada MrsO-UK_Surrey

      Posted

      Thank you so much for staying on and giving us  great advice, kind words of encouragement and reassuring us that there is an end to this sometimes dark tunnel.

      Big hugs💕

      Diana 🌸

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Mrs.Mac-Canada

      Posted

      Diana, thank you so much for YOUR very kind words.  I've been on this forum since 2006/7, the only one available for PMR at the time, by now almost part of the fixtures and fittings!  Seriously though I do feel it is important for at least a few of us who have recovered to stay around and offer reassurance and proof that PMR/GCA really does get fed up of hanging around, with our lives eventually returning to normal.  May you soon see that light at the end of the tunnel.  Hugs to you too.xx
    • constance.de
      constance.de MrsO-UK_Surrey

      Posted

      Morning Mrs.O.  When you say "return to normal" do you really get no twinges, etc?  Would you say you are as well as you were before GCA/PMR?  Can you do everything?   Just being interested/nosey!!!

      Constance

    • MrsO-UK_Surrey
      MrsO-UK_Surrey constance.de

      Posted

      Hello Constance, no you aren't being "nosey" at all - that's the way we learn!  Yes I really did return to my "normal" when PMR and GCA decided to disappear into the ether.  I say "my normal", because long before the onset of PMR/GCA, I already had to be careful  due to having spondilolisthesis (slipped vertebra at the base of my spine) and also, like many older people, a touch of osteoarthritis  I can do everything  except for the length of the walks I used to do pre-PMR.  I can walk briskly, and comfortably, for a maximum of an hour or so, but can get a little uncomfortable going further, very possibly due to the after effects to my spine.  But then I am also 9 years older!  Whilst I value feeling well, I still respect the fact that I have had PMR.  I am in touch with a couple of people who have recovered from PMR for the second time, and they both admit that they seriously overdid things and created stress for themselves between the bouts.  A lot of contributors to the various PMR forums mention a period of stress before succumbing to PMR.  A lesson to be learned there, I feel.  So stay positive (most important) and, to use Margaret's word, "sane"!wink   
    • erika59785
      erika59785 MrsO-UK_Surrey

      Posted

      Yes, Mrs. O I agree with you.  After a week long battle in trying to get out of bed without excruciating pain......now much better luckily ----because of the higher dosage of prednisone and actually getting a tempure pedic mattrass (returning the FIRM one which I was allowed).  Never thought that pain can be so bad!  And now I am TIRED and feel exhausted, but taking it easy as much as possible. 

      Your comforting input is always very appreciated for us newbies who still struggle and are looking for advise and assurance that all this is "normal" when having to deal with PMR.

      Enjoy sunny Mexico-----it is cool and rainy here in the Pacific Northwest.  Greetings to you, Erika

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