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Really having difficult time

Posted , 10 users are following.

judytal
judytal

i guess I'm just a whimp...  I can't handle the fatigue.  My arms , my shoulders, my legs feel so weak.  My whole body feels as if I can hardly move.  Unfortunately I think if I eat somthing I'll get some energy but I think I've finally realized it doesn't help and all I've done is gained so much weight!!!

0 likes, 13 replies

13 Replies

  • judy50581
    judy50581 judytal

    Posted

    Are you taking steroid ?
    • judytal
      judytal judy50581

      Posted

      Hi Judy,

      Yes, I'm taking 4mg twice a day.  I would take more but then it would get used up before I can get it newed plus I'm afraid of causing more problems . 

  • charlie44644
    charlie44644 judytal

    Posted

    Judy,

    More information would be useful.

    When did it start?

    Have you been diagnosed? Are you on any medication?

    Who made the diagnosis?

    Dosage? Have you tapered from from a higher dose to a lower dose?

    Charlie 44644

     

    • judytal
      judytal charlie44644

      Posted

      Hey Charlie, 

      Thanks for your response.  This all started with what I thought was a shoulder problem.  WEnt to ortho... got an injection (corti)  didn't help.  Woke up one morning with a severe stiff neck; it was unusual.  Back to ortho who said it was a pinched nerve.  Disagreed with him... next severe pain in hips ... could hardly get into the car... pushed through this.  Went to Rhum.  blood work did not confirm... he gave me Pred. but when that prescription was up and I started to report severe fatigue he referred me back to my Primary or he said "see a neurologist"  Will not return to him!  So now my Primary has, I feel reluctantly prescribed me 4 mg twice a day.  At first it was 4mg but I couldn't get going on that.... now twice a day.  The pain is mostly gone except for this crazy tooth ache every morning until I take the first Pred.  Mostly the challenge is the extreme fatigue which is inconsistent...  some days I feel pretty good other days I'm dead in the water....  like this morning I feel like I can hardly move but need to get the dogs out and get myself going.  It may pass as the day goes on or the Pred kicks in...  I try to walk on treadmilll when I feel up to it just to get some exercise which is very important to me.  I'm a physical therapist and not being able to move as I used it is very depressing.

      ok, thanks agin Charlie

  • carol20979
    carol20979 judytal

    Posted

    Do you have PMR? are you on prednisone, If you do take it does it not help?
  • FlipDover_Aust
    FlipDover_Aust judytal

    Posted

    Hi Judy. I hear you.

    Two things I've noticed:

    - pred doesn't really fix the fatigue unless you are on fairly high doses and you get a bit hyper

    - my Dr increased my anti-depressant medication when I couldn't get the fatigue under control and it worked immediately. I've since returned to my normal dose and the fatigue hasn't returned (as yet and it's been over a month)

    sounds like your dose might be too low if you still can't lift your arms etc....

    • judytal
      judytal FlipDover_Aust

      Posted

      Hi flipdover,

        Not really wanting to take antidepressants.  Sorry.  I guess I can be too stubborned .  I've been doing alot of research on my own.... None of the physicians I've seen told me about the fatigue... especially the Rhem.  he didn't even believe my symptoms because the blood work did not confirm the Dx...  will not return to him. 

       

  • teenyjeeny
    teenyjeeny judytal

    Posted

    Judy You are NOT a whimp no way the fatigue is part of PMR you probably need a higher dose of Prednisoline see your Doc or Rhuemi
  • margaret22251
    margaret22251 judytal

    Posted

    No you are not a wimp, this takes time to adjust and to get to know what you body is telling you, so dont ever thionk that. Welcome by the way to the club, have a good daybiggrin
    • judytal
      judytal margaret22251

      Posted

      Thanks, Margaret,  I've been dealing with this since August... maybe not such a long time but for me it has been and up and down journey,
  • MrsO-UK_Surrey
    MrsO-UK_Surrey judytal

    Posted

    Judy, provided you are on the correct dose for your inflammation and are having plenty of rest (and a little walk as far as will allow every day), you will get better.  There is no easy way to speed this process up, I'm afraid.  Be sure to follow a diet containing as many known anti-inflammatory foods as possible, avoiding al processed foods, and stick to a low carb diet to reduce the weight gain.
    • judytal
      judytal MrsO-UK_Surrey

      Posted

      Thanks, MrsO,  I do sleep, thank God for that.  At least 7 to 8 hours a night.  I'm in bed by 9 and up at 5, 6 or so.  Need to walk the dogs, I have two.  Not easy in the morning to over come the fatigue in my legs to get them moving but I go.  My arms feel like I can hardly lift them but again as I said I do... 
  • Mrs.Mac-Canada
    Mrs.Mac-Canada judytal

    Posted

    Hi Judy,

    if you have had a dx of PMR a starting dose of 8mg a day seems to be a very low dose to get the inflammation that is causing the pain under control.  That is usually the first step in managing this disorder or what ever you want to call it.

    None of us like taking pred. but when you have PMR you have the choice of living with pain (and sometimes that's from a wheelchair) or using it to manage the inflammation and reducing VERY slowly until you go into remission. There is lots of info on this on the forum.  At low doses the side affects are minimal although still not great if you're on them for years.  By reducing slowly we hope that it won't be for that long.

    As far as the fatigue goes it is the part of PMR that most of us find most frustrating.  We have had to learn to listen to our bodies and when we need to rest we rest. If we fight it we are more exhausted and, with me, my muscles feel like I've been put through a washing machine.  If you are tired in the morning and still walking your dogs I would think that is probably not helping.  

    There is a lot of wonderful information on this forum and as you read other people's experiences you will see that, although there are common threads, everyone's journey with PMR is unique.  You will need to be patient and find what works for you.

    As far as you GP and Rhuemy go, you can print off or refer them to the Bristol plan available on the North East group site. Sorry, I'm on my tablet and don't know how to insert link. It may help help your cause.

    I hope you find your own path to remission soon.

    Hugs,  Diana🌸

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