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I was just Dianosed with PMR.....

Posted , 12 users are following.

cruiserdiane
cruiserdiane

This is so new for me.  All the pain I was having...I thought was old age until my GP dianosed me with PMR. Now I'm so depressed!!

 

0 likes, 12 replies

12 Replies

  • Nefret
    Nefret cruiserdiane

    Posted

    Hello and welcome, but could you help us out with a little more information, Cruserdiane?

    Are you on steroids and if so how much?  What information have you been given and/or read on PMR?  Some more info would give us something to work with or around.........and if you are depressed you must let your doctor know.  It can be a side effect of both steroids and PMR, and s/he won't know if you don't tell them.  There are therapies and treatments readily available, there is absolutely no need to suffer with depression at all.

     

  • ptolemy
    ptolemy cruiserdiane

    Posted

    Hi Diane, I am so sorry you are depressed. When I was diagnosed with PMR I was in excruciating pain and the steroids I was given were like a miracle, I could actually live again. There are lots of people on this forum who have PMR and have gone through what you are going through and have come out the other side. You are not alone. The important thing is to take it easy, you have an illness and you need to pamper yourself and not overdo it. 
  • pam7653
    pam7653 cruiserdiane

    Posted

    I am a female, 62 yrs old. I was diagnosed with PMR in 2013. I had it since 2011 but over-active thyroid issues over shadowed my PMR. I started at 15 mg Predizone and dropped down gradually until I reached 0 mg a year later. Of course it came back in a week. I was back up to 15mg and another gradual decline to 5 mg where I stayed. That also took a year. Prednizone was a life saver for me. I couldn't move, struggled getting off the couch, out of the car etc. the 3 rd day on Prednizone I cycled 33 miles. My life was back.

    Yes, I still have a few set backs and joint pain occasionally.

    I still cycle now anywhere from 10-50 miles at a time. I swim across my lake 2-3 times a week, I also kayak a lot. In August I climbed a 14,225 ft mountain. It was hard as hell, but I did it!

    Life is not over, you must not let it take charge. Not everything that goes on with you is related to PMR either. Some is just age and arthritis.

    So pull yourself up by the old boot straps, take your meds and get out there.

    You don't have a terminal disease, thank the Lord!

    You are in good company with this group! You will likely get more info here, than by your doctor. The U.S. seems to be lacking in information. Be your own advocate. Only you know YOUR body. If they put you on Prednizone, decrease slowly, 1 mg every

    6 wks or so.

    Good luck! We're here for you!

    • Juno-Irl-Dub
      Juno-Irl-Dub pam7653

      Posted

      Lord Pam, you're just amazing! I have a great picture of you swimming over and back across a lake in bright sunlight, then later into the kayak  .. Next day heading off on the bike for 10+ miles . . and later still on top of a mountain arms outstretched!!   You clearly put the rest of us to shame. I used to think I was doiing well when going for a 30 min. walk most days. That's me put in my place !

      Seriously, well done, and long may it last - and I just love your "Just do it" philosophy . . . . 

        Kind regards,  J

    • pam7653
      pam7653 Juno-Irl-Dub

      Posted

      Haha I had to laugh when I read your reply Juno. I live on a lake, and yes it was sunny on my last swim. My bright yellow kayak was out the day before! Yes, when I got to the top of Quandry Peak in Colorado, I did outstretched my arms in delight for a picture! My last five years I seem to keep hitting walls trying to knock me down. I can't run anymore because of Plantar Faschitis, but I will be back hopefully next summer. I have surgery scheduled in Dec for it. Had my other foot done in 2012. I ran a little last summer and placed in all 3 races in my age group. Not many women my age run. smile

      Thanks for your positive remarks!

  • Anhaga
    Anhaga cruiserdiane

    Posted

    I know how you feel. Although the treatment comes with its own demands you will feel better soon.  When you get some energy back, be careful to pace yourself - I didn't and paid a price.  Now I'm doing MUCH better!  Whenever you feel bad, get onto this site, or PMRGCAuk, and read through peoples' stories.  I found this site in the middle of the night when I couldn't sleep because I had been reducing the pred too quickly and was starting to relapse.  I felt that I had fallen among friends, whose advice has been invaluable.  wink
  • beatrice74480
    beatrice74480 cruiserdiane

    Posted

    Don't get depressed you will feel so much better once the Pred kick in properly. I am just tapering off Pred now on 1daily but been this far before so praying not to get a Flare up. Good luck I was diagnosed 28months ago and been able to continue exercise walking etc. It seems a long journey and fatigue is another fact to look for.
  • EileenH
    EileenH cruiserdiane

    Posted

    There is no need to be depressed about your diagnosis - you could have a far worse diagnosis than PMR. After all, you thought it was old age - and that, however much we may resent the fact, is unavoidable! And PMR is not a progressive disease like MS or RA and it isn't terminal. If I have to have an autoimmune disorder I'm not going to complain about it being PMR!

    PMR can't be cured but it can be well managed with the right dose of pred and some life-style adaptation if necessary. Some people, like Pam, are relatively lucky and are able to carry on life much as before. Others are far more affected by the fatigue and you have to learn to live around that. But a good life is still possible for the vast majority of us.

    As Nefret has said - if you are depressed tell your doctor. There is no need to add that to the mix.

    • cruiserdiane
      cruiserdiane EileenH

      Posted

      Thank you everyone for you kind reply.....You are correct it could be a whole lot worse and I need to educate myself on this dx .  I feel a lot better

      today and I will address my depression with my Dr tomorrow.

      Thank you again and glad I found this support group!!

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