I suddenly felt I'd aged - Helen Twohig's paper about PMR

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.

She works closely with a group in Keele who have done sterling work on PMR and GCA

eprints.whiterose.ac.uk/852...

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 hope 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, he was not too long ago.

13 Replies

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  • Hi,

    Very true about the Yorkshire accent! And reading them brought back too many memories of early days. Don't ever want to be there again!

  • Me neither...

  • @pmrpro thank you so much for this article. I identified so much of it in my own experience. I find it so much easier to cope with my condition with all this knowledge. It gives me some power back to make decisions about my own treatment. I am getting limited contact with my doctor as so far I have been able to reduce fairly successfully but I know it is going to get tougher from now on. I really appreciate how much you contribute to this forum.

  • There is a patient research and solutions company based in Toronto, Canada at the moment conducting a study on "patient and caregiver experiences in the field of GCA. The research will focus on the patient's journey with GCA , aspects of daily living from diagnosis through disease management, to support patients better". Participation consists of a one hour telephone interview, mine is this week, and 5 days of online journalling. Compensation is $200 😊

    Cheers

  • Do they offer to call people in other countries?

  • No, it's just for those in Canada, but maybe they have other studies in other places....there's lots of info on their site:

    selfcarecatalysts.com/giant...

  • Thank you PMRpro for this revealing article, I found the patents' replies very moving as they tried to make sense of their (our) mysterious condition. I've been one of the relatively lucky ones who do not suffer from much pain or stiffness now I'm on pred, but the greatest effect has been on my confidence and mood (although yesterday, when I was taking photographs semi-crouching in the middle of a small stream I found I didn't have the strength in my thighs to stand.. and rather gently toppled into the water on one knee, holding camera above my head. I did laugh, but very ruefully..) 'Weakness' as opposed to pain is how I would describe the outcome so far after 15 months of PMR, and yes, feeling older in both body and mind as the psychological battle to remain positive takes its toll although I'm an optimist by nature. I felt the still-young part of my life, just as I finally had no responsibilities after years of caring for others, had been 'stolen' from me by PMR and this resentment had to be recognised and overcome, no good comes of shouting 'unfair' even if it is! So thank you again for this article, and for all your dedication and knowledge on this forum.

  • "I felt the still-young part of my life, just as I finally had no responsibilities after years of caring for others, had been 'stolen' from me by PMR "

    and I think this is something that is forgotten by many doctors because it hasn't yet happened to them. We are just "the elderly patient" and there is a lack of appreciation of just how much a normal healthy 60-year-old can do. It is perhaps appreciated more here in the mountains where people in their 80s are still riding their bikes and climbing mountains for fun. Not to mention the ones who are still farming their mountain alms!

  • Thank you PMRpro - excellent article. Have just finished printing 15 pages with view of sharing with my GP which as mentioned on here has one other patient other than me -haven't seen her in awhile so who knows she may have another by now!

    Blessings:)

  • I live in South Yorkshire and I felt very close to the voices trying to explain and be understood. Thank you. Jen

  • Me, too. I feel like ive aged ten yrs in last few months

  • You took the words right out of my mouth!

  • A great paper. So good to see some qualitative research. Thanks very much for sharing it.

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