I suddenly felt I'd aged - a paper describing the effects of PMR
Posted , 20 users are following.
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
lodgerUK_NE EileenH
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Eileen
We worked closely with Helen Twohig and she came to our support group meetings. Helen works closely with Keele, whom as you know have been doing sterling work in research on PMR & GCA for the past few years.
He was there beginning of this year - but Helen is brilliant.
rocketman42 EileenH
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lodgerUK_NE EileenH
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I followed the link and it took me to a PDF to download, did I do something wrong?
EileenH lodgerUK_NE
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No - it is the "free to air" version - you can also read it online, I did.
Anhaga lodgerUK_NE
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I was able to read it online, and I also downloaded it for future reference. Had previously tracked it down in the library of our local medical school and read it there. I'm so glad it's available now. I see it was supplied by the author, so that is truly kind of her.
barb30898 EileenH
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n.barb
kathy67492 EileenH
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Sorry I was hearing it to describe the agony of the PMR. I am fortunate to have a rheumatologist who has been patient and attentive to the same descriptions mentioned in the article...and I received an early diagnosis.
Seems it is more common to suffer for months...or years...not knowing what is going on.
erika59785 EileenH
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mimi1950 EileenH
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This paper really resonated with my experience so far. I, too was put on anti depressants which did nothing to make me feel happier, it only made me feel hopeless and that it was all in my head. Apparently that in itself is indicative of PMR.
When asked if I had morning stiffness that lasted at least 45 minutes, I answered that I didn't know because I had had that symptom for years due to osteoarthritis. They immediately ordered a sort of electromyography to test for muscle atrophy and to check if the nerves are sending the right signals to the brain for the muscles to work, very painful it was-torture, when they should have known that PMR, which they already suspected, does not cause muscle atrophy or nerve damage.
It was great reading these testimonies, they made me feel validated, not like some kid pretending to be sick in order not to go to school. 😂
mimi1950
Posted
mimi1950
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Anhaga mimi1950
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That morning stiffness thing was a confounder for me, too. I have, since pred treatment, decided that my morning stiffness of many many years was mostly never osteoarthritis, but longstanding underlying inflammation which eventually flared into PMR. I've not found the morning stiffness has come back to any extent since lowering my pred dose, although some problems with my hips, from spine (arthritis!) have.
EileenH Anhaga
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EileenH mimi1950
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I never felt it was in my head - though I had a GP who sort of insinuated it. I knew him fairly well though and we were on Christian name terms so I did tell him I knew I was his heart-sink patient!
But I agree - it is a superb paper.
Elijo EileenH
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I just read the whole paper. So apropro and interesting. My GP dx me very quickly when I told him of my inability to move, stiffness, pain, etc. etc. He called me on the phone after I give my symptoms to his nurse and telling her that I did not know what to do, and thoght of going to a pain clinic. He ordered ESR and CPK fort he next day, and to start on the prednisone pak after the lab work. After taking the appropriate doses of pred. the first day, Ifelt so much better by the end of the day. The following week, after using all of the pak I had my appt. and he dx PMR, prescribing prednisone 40mg. I've been told that was high dose,but I felt so wonderful and happy. That was a year ago. I tapered down slowly to 3.5 but began having flare so now taking 7.5mg. but still having some shoulder stiffness early AMs.
Thanks for posting siteforthe info! Elinor