Thanks Again

Posted , 13 users are following.

its a little over three years since I first posted a thanks for all the help in this forum. For some reason I stayed around,

This is another thanks. It helps lots writing about my progress, and hopefully helps others.

I'm currently taking 3mg/day pred, about ready to try 2.5. Stable. I don't have the energy I once had but I'm writing from a campsite on a beach on Fraser Island (Queensland), happy watching a daily procession of whales passing by, some as close as a couple of hundred meters away, on their migration northwards. 

But now its time to move on.

Bottom line is that, for me, the effort required to navigate around the forum, the incessant scrolling, and the glary lack of contrast, is too great.

While the recent changes to forum software were cosmetic the result for me has been to make the forum even more difficult to read and follow conversations than it once was.

Worse of course is the half hearted effort at responding to feedback.

Just as the programmers can wait a couple of weeks to see if the fuss dies down, so I can wait a couple of weeks to see if they respond to reasonable feedback.

They haven't. So this is my last post.

I wish all my fellow sufferers well, and thanks again for all the help.

 

1 like, 21 replies

21 Replies

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  • Posted

    I'm sorry it's been difficult for you here, Julian. I'm quite new to this forum and I've experienced very helpful feedback. Knowing that I'm not alone in this hell of PMR, is a comfort. My family doesn't understand my sudden limitations. When my initial does was cut in half and my symptoms exploded, my my doctor put it back up but it took nearly three days for my symptoms settled a bit. My husband kept asking in a exasperated tone "Why aren't you better?!" That made me cry and feel as though I should apologize for having PMR.  I've cried an awful lot the past couple of days. It's not all from the pain, but rather my own inability to stop this.😭

     I hope you can come back at some point. There are good people here.??

    • Posted

      I have had PMR for 5 years, and my husband still doesn't understand it...my advice is, don`t get upset and waste precious energy trying to make him understand....when I get a "remark" I give him one of my looks!...that`s enough for him to back off  One in my family just thinks I`m a steroid addict!....why would I want to be that.........Unfortunately for some of us it`s a roller coaster ride....even I don`t understand it....sometimes we feel worse when we haven`t even "earned" it....

      ?I agree this forum is an enormous help, I have got the answers from here, not my rheumie at the hospital.....who I see next week....which will be a total waste of time....after that I will manage my lowering (still at 10ish) with my GP.....

      ?Good luck with lowering and do it at your pace what your body tells you, I Iearned the hard way with a rheumy lowering me way too fast!  (tortoise and hare!).....smile

       

    • Posted

      Thank you, Linda

        This morning was 90% better! Granted, I'm on 30mg for the past three days, but I got out of bed by myself!😬

       It's a bit comical that your family thinks you're addicted to prednisone, because I told my doctor that if he stopped my prednisone prescription, I'd take to the streets late at night to find a prednisone dealer.😂

         Today is almost like days before the PMR came along. A twinge of pain in my upper left arm, but that's it. I can sit on a chair without the back of my thighs screaming, I can reach above my head and today I put on a bra without help or the straps causing havoc in my shoulders. 

       Today....I'm smiling😊

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