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I suddenly felt I'd aged - a paper describing the effects of PMR

Posted , 20 users are following.

EileenH
EileenH

While looking up the details of this paper to use for an answer to someone I discovered that it is now available "free to air" without paying for access to a journal. Helen Twohig is a GP in Yorkshire England and was part of a group who carried out a survey to assess the effects of PMR on patients and their day to day lives and experiences with it.

http://eprints.whiterose.ac.uk/85252/1/WRRO_85252.pdf[/b]

Much of it is in medical science-speak so a bit complicated but throughout it you will find quotes from the patients. Those of you who are familiar with Yorkshire will hear their accent - I do! 

I'm hoping the moderator will allow it because you may find some of these quotes useful to give to people so they can understand a bit of what you are going through. And if you happen to be in the Sheffield area - there is a rheumatologist mentioned who you'd think might really understand PMR! I don't know if he is still there.

3 likes, 52 replies

52 Replies

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  • pauline36422
    pauline36422 EileenH

    Posted

    haha me too,  when i couldnt get down  clean my skirting boards   becaues was in too much pain,  i didnt  belive  they were so bad.  untill 3 years  later.   dont   no  what   vistors  thought.  but none   offerd    to do   them  for me  ha ho
  • heather39822
    heather39822 EileenH

    Posted

    Hi Eileen. I am sorry to bother you but don't know where to turn. I have stopped receiving "Patient" posts and don't know how to get myself reinstated on the email list. If I try to register am told I am already registered. Wondered as our resident Guru if you knew of a way?  Very frustrating as am being investigated for GCA and am in dire need of support.

    • EileenH
      EileenH heather39822

      Posted

      I've reported it to the moderator - have you checked your settings on your Profile page? Scroll up to the top of this page and you will see your name  - click on it to get to the profile page and look at settings where you can see what notifications are to be sent to you, it might have "unticked" something. 

      Under your name you will see "You have notifications" in red - click on that and it will show you all new posts since you last looked and you can click on each one to get to the post. 

      I've had a load of non-notifications recently for some reason but it seems to be back to normal now - insofar as it is possible to tell! But I now check the notifications on the page as well!

      And having said that - hope you see this!!! But I do imagine you will look at this...

  • constance.de
    constance.de EileenH

    Posted

    Morning Eileen.  I somehow missed this dicusion, but - how interesting, especially all the replies.

    Great link to Helen Twohig.  I have downloaded the link - a suggestion to all the 'newbies' on here.

    Hope life is treating you well.

     

  • rose55750
    rose55750 EileenH

    Posted

    Hi Eileen, I just found this paper and am so glad I did. It's great to hear that others have had similar experiences and thoughts to oneself. I was diagnosed at the beginning of December 2016 after summoning what remaining energy and desperation I had and going privately to a rheumatologist. I feel like I've been pushing the world uphill through all this. The steroids had an immediate and positive impact. Rationing of resources is an area I'm really struggling with tho, having recently returned to my part time work and having a generally busy week I now feel totally 'overdrawn' energy-wise. I also don't think I'd really taken account of the psychological aspects of PMR. The frustration and feeling less than yourself is just horrible. I suspect this is just a tired day and that tomorrow will look different again but over the course of the coming months and years I can see there will be a lot more to deal with than popping pills. I'm just glad your advice is out there because even in the short time I've been accessing the forum your advice in particular has been invaluable. Many thanks, Rose

    • rose55750
      rose55750 EileenH

      Posted

      Many thanks Eileen . I have those resources to hand now so I need to sort out my pacing. I'm regularly all out of spoons by 4pm so I can see I have my work cut out. I've never been good at asking for help but I can see this is my opportunity to work on my technique ;-)

    • EileenH
      EileenH rose55750

      Posted

      There's a lot of day left after 4pm!!!! And yes - you learn how to do a lot of things when you have a chronic illness wink

    • constance.de
      constance.de rose55750

      Posted

      Rose, if you have just found the Spoons Theory you have done very well to get down to 4 pm before running out of spoons - a lot of us had used them all up by 11 am !!  Stick to it and you'll soon have enough to reach the evening and then have a nice lazy relax before bed.😀

    • rose55750
      rose55750 constance.de

      Posted

      Hi Constance, thanks so much for the reassurance. Since returning to work have really struggled with energy expenditure. Things which used to be routine now seem to use inordinate amounts of energy. Emotionsl energy also something I hadn't really thought about. Still getting my head around having the condition and losing so much of the old me. Lots to get used to and still early days. Will try to be kinder to myself rather than beating myself up. Once again, thanks for the moral support! Rose

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