Poor Kirsty: So Kirsty Young has been diagnosed... - PMRGCAuk

PMRGCAuk

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Poor Kirsty

62 Replies

So Kirsty Young has been diagnosed with fibromyalgia, good for her that she's advertised the fact and that she is taking time off from her radio programmes to help combat her illness. My newspaper describes fibro as a little known deasease that affects mostly woman aged between 40 and 50 and it's painful all over the body. Hopefully this should help other sufferers when dealing with enployers and some doctors!

62 Replies
PMRpro profile image
PMRproAmbassador

It might - if the media didn't have a few factual errors. Such as there being effective treatments for fibro!

scats profile image
scats in reply toPMRpro

BBC site I read said there wasn't.

PMRpro profile image
PMRproAmbassador in reply toscats

The newspaper I saw implied there was...

piglette profile image
piglette in reply toPMRpro

The Daily Mail had a lot to say about it including the fact that some people did not think it existed! I wonder if she has PMR and not fibromyalgia, it is quite possible they got it wrong.

It always helps if someone famous has something so that we can say ‘That’s What I’ve Got!’

PMRpro profile image
PMRproAmbassador in reply to

The ones who developed PMR didn't want to help...

in reply toPMRpro

Typical!.....

PMRpro profile image
PMRproAmbassador in reply to

MrsT - developed it November, "cured" by May. Yeah, right...

And one of the senior royals. Princess A I think.

in reply toPMRpro

Duchess of Gloucester if l remember correctly. No, it was Princess Alexandra!

PMRpro profile image
PMRproAmbassador in reply to

Fair nuff - I'm sure my MIL would have known had she still been alive. I was never any good at that!

HeronNS profile image
HeronNS in reply to

dailymail.co.uk/news/articl...

PMRpro profile image
PMRproAmbassador in reply toHeronNS

Well - we can see how accurate THAT was!!!!!

HeronNS profile image
HeronNS in reply toPMRpro

What was wrong with that article? It was linked off the official Royal site.

I have no idea what's happened to Princess Alexandra since. Is she even alive?

PMRpro profile image
PMRproAmbassador in reply toHeronNS

It calls PMR an arthritis. Which can cause blindness. Not quite.

Maybe I'm just picky...

Yes still alive - and back to some work it seems looking at her webpage.

HeronNS profile image
HeronNS in reply toPMRpro

Yes, you are picky 😉 , but of course you're right, it would be better if they got details like this correct. On the other hand I can see how this could happen. PMR appears in lists of arthritic conditions, is treated by rheumatologists, and related GCA can cause blindness.

SheffieldJane profile image
SheffieldJane in reply toHeronNS

She certainly had the background to develop PMR. It’s all there, the ongoing stress with her daughter, bereavement. It’s a pity she wouldn’t be a high profile figure for the charity. I suspect she’s just too tired.

GerriMc profile image
GerriMc in reply toPMRpro

Who? Why? Name and shame!

HeronNS profile image
HeronNS in reply toGerriMc

An otherwise quite informative as these things go article from 2013 in Daily News about Princess Alexandra and her diagnosis of PMR.

I just looked up what internet has to say about difference between fibro and poly and the articles come from arthritis organizations. I mean, the popular press should do its best to get details correct but I don't think this is a particularly misleading article. They make clear that it's a long lasting debilitating but treatable disorder, and that the princess had been told by her doctors to rest. As a member of the public with no skin in the game this is really all one needs to know. If one wants more details, or if it sounds like something one should know more about, s/he can look it up on the internet!

PMRpro profile image
PMRproAmbassador in reply toGerriMc

Sorry? Unless you mean Princess Alexandra - Heron asked if she were still alive...

teesher profile image
teesher in reply to

Babs Powell (ex Pans People dancer) developed PMR in 2010.

dailymail.co.uk/health/arti...

Wonder how she is now?

GerriMc profile image
GerriMc in reply toteesher

That’s actually a good article even if it is the DM

Marijo1951 profile image
Marijo1951 in reply toteesher

Well, reading that has depressed me. Climbing Kilimanjaro and racing in the South Pole with PMR? I have to brace myself to visit the library!

SheffieldJane profile image
SheffieldJane in reply toMarijo1951

It was probably a burst of denial. Sounds like she’s a more typical patient now.

teesher profile image
teesher in reply toSheffieldJane

I thought the article made an interesting point about PMR being common in those who'd been very active in youth, dancers etc. I've noticed quite a few on this forum who were runners/cyclists. Just an observation. The most I've done is yoga and walking..

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toteesher

Can’t say I fall into that category either - apart from playing hockey! But then I never was one for conforming to type!

HeronNS profile image
HeronNS in reply toDorsetLady

I certainly don't fit that category either. The only "games" I enjoyed at school were when we were very young and played something called pirates where you had to go around the gym without touching the floor. And I guess dancing (learning folk dances) was okay!

in reply toHeronNS

Pirates. Great game that was. Ropes,beams,wallbars & hoops on the floor. Very competitive.

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

Me neither - I detested sport of all sorts except swimming and I wasn't brilliant at that either. I had started exercising a few years before PMR started though - I needed to lose weight and went to a Rosemary Conley class and found things I rather enjoyed doing.

HeronNS profile image
HeronNS in reply toPMRpro

But you used to ski.

PMRpro profile image
PMRproAmbassador in reply toHeronNS

Not until I was over 30! And wasn't particularly sporty about it. It wasn't something I did every week either - not until we moved here and that was towards the end of my skiing life as it turned out.

HeronNS profile image
HeronNS in reply toPMRpro

Because of walking and my extensive portfolio of physio exercises I'm probably more active now than I ever was in my adult life!

SheffieldJane profile image
SheffieldJane in reply toteesher

Yes I have noticed that. Also high achievers, workaholics and those who have the care of others. I scrape into the last one I guess.

stellafmdm profile image
stellafmdm in reply toteesher

Well that would include me as I was into show Jumping up to the age of 24, (not too successfully!!)

bunnymom profile image
bunnymom in reply toMarijo1951

Hahaha 😁 me too!

Rose54 profile image
Rose54

It was Lady Gaga earlier this year with Fibro

Had to cancel her tour

Fibro right into spotlight then never heard anymore

HeronNS profile image
HeronNS in reply toRose54

Well, I don't think you would expect this to remain big news. It's not like an infectious agent which could run rampant through the population.

I'll apolgise in advance for this...

It's media shite.

Few facts, much flawed reporting. Ill informed and unhelpful at best but if the odious Mail can grab a few readers, it must be right. Even the so called broadsheets have little to offer other than the (so called) celeb angle. When this 'story' broke yesterday, she was reported to have a 'fibromyalgia like illness'...? Today it's apparently fibromyalgia. So what changed?

PMRpro profile image
PMRproAmbassador in reply to

That well known source: The People's Medical Journal...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

I would normally agree with your comment, but sometimes they get nearer the truth - see my response further down.

But perhaps that’s because they actually spoke to the organ grinder and not the monkey!

markbenjamin57 profile image
markbenjamin57

Yes Chris, I saw it in the BBC News website. She's a great broadcaster, Desert Island Discs etc.

One thing I noticed though: (if I'm correct), the BBC editorial says that she has (q): 'a FORM of Fibro..'. Maybe she in fact has PMR - but the editor thought better to mention Fibro since it's better known than PMR, and the audience might relate better?

MB

in reply tomarkbenjamin57

Personally thought the description of fibro was taken from a Google search.

markbenjamin57 profile image
markbenjamin57 in reply to

I've no idea Chris. I'm only going on the BBC website editorial. The intriguing statement for me was (q): '...a form of Fibro..' etc. :-). That's why I wondered if KY does in fact have PMR. Who knows..?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

I’m not a fan of DM, but sometimes it does get things correct. The attached article was a result of the paper contacting the charity and asking for a volunteer to tell their story - unfortunately I’m not famous enough to create that much interest.

This was a good few years ago, and my chipmunk cheeks have gone as has a fair amount of weight!

dailymail.co.uk/health/arti...

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

They probably thought they should get it right or they'd have to answer!!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

Too true! 🧐

Q-owl profile image
Q-owl in reply toDorsetLady

The description of a lace curtain effect makes me even more certain that my mother lost her sight due to GCA. She always said she looked at life through a lace curtain. It was never confirmed and she received no further treatment as theresult from biopsy was negative.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toQ-owl

Sorry to hear that- did she have any other symptoms? If she did I guess they were put down to “age”!

Q-owl profile image
Q-owl in reply toDorsetLady

Yes, that's right.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toQ-owl

That figures! Did she lose sight in both or just one?

Q-owl profile image
Q-owl in reply toDorsetLady

Unfortunately, from childhood, she had very poor eyesight in the other eye. Only able to read the largest letters on the test card.

There was one corner of one eye that she could see with so she could read letter by letter with a magnifying glass, but never scan a whole word.

mega profile image
mega in reply toQ-owl

How sad for you and for your mother, of course.

It seems it has only recently been recognised as a 'condition/disease'. 5 GPs at my surgery had never come across it, although they were all middle aged. After all sorts of tests the only thing I got from my GP was " you're unique, a complete mystery, I despair"!

It was the head of oncology at my local hospital who raised the possibility of it being GCA. That was 7.5 years ago and although I have improved, I am still suffering the effects of it and am still on steroids.

As a small shred of comfort to those who have recently been diagnosed, I do think I am atypical and I am nearly 80. Still winning though!

PMRpro profile image
PMRproAmbassador in reply tomega

I did wonder at first whether you meant fibro or GCA/PMR.

PMR was first described in 1888 and the first mention of GCA was in 1890. The frst temporal artery biopsy showing it was in 1932 and in 1950 they showed it responded positively to corticosteroids which had recently been developed.

So, no, it isn't a relatively recently recognised condition! GCA IS rare and I wouldn't expect many GPs to have seen it - but they should know enough about it to recognise a potential case. For goodness sake - even paramedics in Yorkshire are taught to recognise it!!! And PMR - of which GCA is an extension - is the most common cause of rheumatic symptoms in over 65s - a GP jolly well SHOULD know about it.

mega profile image
mega in reply toPMRpro

I am simply saying that nearly eight years ago no GPs of my acquaintance recognised it - in fact were completely flummoxed by it.

SheffieldJane profile image
SheffieldJane in reply toDorsetLady

You are famous to us! 😉

Suet3942 profile image
Suet3942 in reply toDorsetLady

I remember reading that article. Didn’t realise that it was you DL. X

Rosbud profile image
Rosbud

Well my youngest daughter developed fibrosis in her early twenties and has struggled for 25 years plus but she holds down A full time job and yes it's A real struggle at times , she has found A rheumy who has helped and has learnt to rest when her body tells her it's had enough x

PMRpro profile image
PMRproAmbassador in reply toRosbud

Fibrosis or fibromyalgia? Different things...

Rosbud profile image
Rosbud in reply toPMRpro

Fibromyalgia, I do know the difference but didn't check my post !

Well I don't read the Daily Mail, this was reported in the Times, my post was to celebrate that a celebratory had contracted an illness that not many had heard of therefore bringing it to the public's attention, no need for the vitriolic response from some.

PMRpro profile image
PMRproAmbassador in reply to

I don't know - fibromyalgia is on the tip of far too many people's tongues. It tends to be the most likely fob-off for PMR in younger people, after "depression".

markbenjamin57 profile image
markbenjamin57

Chris, I'm with you on this one.

If I'm correct, I interpreted your Post as meaning that, if a Media Celebrity who's associated with a 'Cinderella' illness like ours (as opposed to the usually publicised 'Headline' illnesses), it might help to raise Public Awareness around the impact of equally Life Changing (even if not Life Threatening) health conditions like Fibro, RA, PMR / GCA etc.

I think your point is: illnesses like PMR / GCA (or similar) can affect anyone from whatever walk of Life - and they doesn't discriminate. So, if High Profile public figures like Kirsty Young and others in the Media tell their story too, this can only be a good thing in promoting awareness for the likes of PMRGCAuk and Us Lot especially.

That said: we both know how Posts and threads here often 'morph' into all manner of other divergent topics, for better or worse. Oh well, Hey ho..! ;-)

All I can say is: keep posting - and smiling ;-)

MB :-)

shala profile image
shala

Talking of celebrities there was a fair bit of publicity for PMR last year when Pam St Clement (ex East Enders) was on a TV reality show trying cannabis oil to help with the symptoms of PMR. She said it was a huge help. I’d probably have a go myself but sadly it interacts with the methotrexate which I’m on!

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