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PMR Outline

Posted , 20 users are following.

amkoffee
amkoffee

Several days ago I posted in here that I was going to be doing an outline about PMR to share with the US Pain Foundation. Well I have completed that outline and I've sent it off to them. It is currently in editing and I have requested a copy of it once he's done editing it. And of course he asked if I could be handy for questions. If I don't know the answers to his questions I will be sure to ask here. The reason I'm writing this is to offer to anyone who wants to see it I'd be happy to email my rough copy to you. I know that a lot of you are in the UK and obviously this is a project for a organization in the US. But I want to tell you that one of my statements was that the UK was miles ahead of the US in understanding PMR. So if you want a rough copy of this outline I'd be happy to send it to you. Just private message me with your email address so that I can send it as an attachment.

3 likes, 47 replies

47 Replies

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  • Edulm
    Edulm amkoffee

    Posted

    Hi,  My name is Ed and I would love a copy. Let me briefly tell you about my PMR. I have what my Rheumatologist referred to as a unique type of it.. I do not have the customary pain in my joints and muscles.  Instead, it makes me feel absolutely terrible in parts of my upper body.  Usually it's in my belly area but it can be throughout the upper body.  It has taken away my appetite to the point I've lost 15-16 lbs in somewhat over a year.  I no longer enjoy a glass of wine.  I no longer feel like doing house or yardwork. When I say it makes me feel terrible I really mean terrible.  I am taking no meds;  Tramadol was helping but it got to the point of doing no good.  I am a 79 yo male and have had PMR for over four years.  I am desperate for some relief.   I live in Columbia, SC USA.  I haven't been reading the emails but I'm certainly glad I read yours.  Thanks very much. Ed

    • Anhaga
      Anhaga Edulm

      Posted

      You should private message your email to amkoffee.
    • ptolemy
      ptolemy Edulm

      Posted

      Dear Edulm, if Tramadol helped it is unlikely you have PMR. PMR means pain in many muscles, so if you do not have muscle pain bilaterally in either shoulders and/or hips it is unlikely you have PMR. Your doctor should give you prednisone for a week or so and see if it improves matters. You should have a pretty magical response normally. Have you had a blood test to check your inflammation levels either/or ESR or CRP, this can show possible PMR. 
    • EileenH
      EileenH Edulm

      Posted

      I suspect it is so unique it isn't PMR - but that is just my personal opinion. There are criteria to be fulfilled to say it is likely to be PMR and tramaadol almost never helps at all - sounds like a lazy rheumy to me (there are many of them).

    • amkoffee
      amkoffee Edulm

      Posted

      Is there a reason you are not taking prednisone?

      To get a copy of the outline you will need to give me your email address through private email. Just click on the little envelope next to my name.

    • Edulm
      Edulm ptolemy

      Posted

      As I mentioned I have "feel bad" and not pain that the Tramadol helped with temporarily.  I have had every blood test known to mankind and both my Internist and Rheumy diagnosed  it as PMR but saying it was a unique type.  My Internist had me on Prednisone for a while in 2013 and it helped a lot but he didn't allow me to stay on it.  I had some inflammation in 2013 but it cleared up and have had none since.  I inquired as to how I have PMR with no inflammation but he could not tell me.  I see him later this month and if I'm not satisfied I will see another Rheumy.  Thanks for your response.

    • Edulm
      Edulm EileenH

      Posted

      You may be right.  As I mentioned to Ptolemy I may see another Rheumy.  Thanks.

       

    • EileenH
      EileenH Edulm

      Posted

      I really don't see how you can say someone has "a unique type" of a well-known syndrome that has fairly defined criteria. Up to about 20% of patients with PMR/GCA do not have raised blood markers - but that isn't the same as no inflammation - and in some people they may rise at first and then not rise again after being on pred. No-one knows why - it is just so. Blood tests don't really show a lot in PMR. or GCA other than that.

      Out of interest though - have they checked your vit D level? 

  • mary19068
    mary19068 amkoffee

    Posted

    Hi amkoffee

    Yes please...i'd be very interested in that..thank you

  • Anhaga
    Anhaga amkoffee

    Posted

    PRIVATE MESSAGE AMKOFFEE.  DON'T SHARE YOUR EMAIL PUBLICLY!  

    CLICK ON THE LITTLE ENVELOPE BESIDE AMKOFFEE'S NAME!

    • amkoffee
      amkoffee Anhaga

      Posted

      Do you think that they will get the message NOW! hahaha
    • EileenH
      EileenH Anhaga

      Posted

      I've emailed the Boss Moderator who will sort it out.

      Please people - this is social media - DON'T put your private details into the interwebs, it is not a good idea!

    • Anhaga
      Anhaga amkoffee

      Posted

      Amkoffee.  Possibly.  Although I've just a received a copy of a post from a contributor who appears to have misunderstood me.  

  • mary19068
    mary19068 amkoffee

    Posted

    Hi amkoffee

    I have sent you a private message with my email address...thank you...

  • amkoffee
    amkoffee

    Posted

    Thank you everyone who has requested a copy of the outline. I think by now I have sent it out to everyone who has requested it and sent me their email address. If you have not yet received it be sure to check your spam folder and if it's not there then let me know by private message.

    • BettyE
      BettyE amkoffee

      Posted

      Belt and braces!

      As you will know from my recent PM , no copy has arrived in my in-box, nor in my spam folder. I wonder if it is just me and my email is playing up ( not unheard of ) or whether others are similarly affected. Don't want to be a pest but really was looking forward to reading your article.

    • BettyE
      BettyE amkoffee

      Posted

      Have just replied but it's waiting to be moderated. Can't think why. It's a friendly, polite reply with no links or anything contentious.

    • EileenH
      EileenH BettyE

      Posted

      I posted once mentioning a Lincolnshire town starting Scun and ending in thorpe and it was nabbed by the computer because of 4 consecutive letters spelling a naughty word!!!! 
    • BettyE
      BettyE EileenH

      Posted

      I find that rather comforting; shows that the algorithms are not infallible. Still a future for real people!
    • EileenH
      EileenH BettyE

      Posted

      They have been set very sensitive I think - a few words that then appear frequently within other words have been causing me some bother. They always get through eventually but it is annoying not knowing why at the time! 
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