Just had this text from mum On morning live bbc 1 at 9 15 they are talking about your condition (cant spell it)…. Bless her. I’m tuning in. What’s the betting they say morning stiffness and over 70’s!!!
UK people. PMR is going to be discussed on BBC Br... - PMRGCAuk
UK people. PMR is going to be discussed on BBC Breakfast this morning
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Buttonshutton
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Just suggested to mum bet they go on about the typical nonsense. She said no. Talking about long covid and mentioned it …interesting
There are a lot of parallels - with GCA too.
Apparently it might be fibromyalgia just been told someone heard that mentioned. Mum may have got mixed up !
I'll give the doctor bunny an 8 out of 10 and would recommend him to a PMR patient - because there is a lot of potential there to train him! But talk about superficial ...
I know. Honestly I was all oooh we are finally gonna be recognised. Discussions research! Should have known better !
I even got my husband to record it 🤷♀️. Thanks anyway, Buttonshutton. Always worth a mention if there's a chance of raising awareness. 👍
I recorded it to post on the Facebook group I’m in for the people in other countries. Feel very guilty for getting people out of bed through my announcement prior to it airing !!
I need something to get me out of bed on some mornings!😄
Looks like it.
Got all excited. Sorry folks. Might delete the post !
Don't worry about - will be interesting to see if anyone else had a look and what they thought!
My only thought is - who on earth watches that ...
😂😂
It lasted a minute at the most!
Watched it and very glad he’s not my GP - he had to READ the info on it. Obviously not knowledgeable about it. Quite worrying.
I found it interesting the presenter said “we’ve had a lot of people asking about polymyalgia”. This suggests been a rise in cases? I wish they had explored it properly. Very dismissive I thought
? Breakfast ? 9.15? Got it on record
On 29 April? Read too late?
Don’t worry was about 5 sentences..not telling us anything you probably didn’t already know! Pity, but covered too many subjects in one short slot.
It would be great to see proper coverage of this condition on TV - I had never heard of it and friends never remember what you have (although mostly I prefer it that way)
There was a piece on GCA a few years ago on one of the series Michael Moseley did on BBC - but they are far and few between.
I imagine this PR spot on TV was generated in response to the OA stories of yesterday. It’s a shame really as the lack of time given doesn’t allow coherent explanation and I feel it confuses people who don’t have these illnesses.My own Mother pointed out the news story about no pain relief for OA to me! She should know better after nursing me in bed for a year through a severe attack of Stills Disease when I was 17 which is RA,
Anyway after the story about exercise and no pain relief for any body malingering with stiff joints I gave myself a stern talking to and am going out for a run..........just as soon as I can bend over to get my trainers on!
When I saw my young physio recently and told him I suffered with PMR he started to put frown fibromyalgia!! Don’t think some of these “professionals” really understand what it is.
Just to add a good note, sort of related.
I visited the opticians this week and, as always alerted him to PMR/Pred/cataracts. I was amazed to discover that the optician I saw knows about PMR and GCA - had quite a chat. He even told me what to look out for in GCA and got it exactly right (which, of course, I had learned from this site). Again I note this - he was young and recently trained in uk. I did come home happy, and not only because my eyes are ok.
I had the same experience with a youngish osteopath. He knew more about it than my rheumatologist . He said it was comprehensively covered in his training.
It was a Physio who diagnosed me after my GP sent me to her to see if she could help with my pain after I had burst into tears in her surgery (had been suffering for 12 months). It really makes you wonder sometimes 🙄
Oopticians are given extensive traing on GCA and often the are the ones who make the initial referral. If they spot it - they make a call to A&E and send you there right away.
They are also the people who told me about sun+pred = cataracts. Becuase once she knew I had it she changed my glasses to re-actolite rapide. Those who don't where glasses should always have high quality sunglasses.
I had the same with my dentist. Knew what PMR and GCA was, difference between TMJ and GCA. Effect of various meds on teeth. Very impressed.
I had the same with my dental hygienist, she said that she had had it when in her 40’s but it had finally relapsed after three and a half years.
By far the best support I’ve had during PMR /GCA has been from my optician. He is both interested and knowledgeable, whereas my GP totally ignores me, and ‘my’ rheumatologist simply reads the results of an algorithm and tells me to get off pred🙄 Very frustrating!
Algorithms have their place - but it sure as hell isn't in PMR!!!!
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