No! It's Arteritis Not Arthritis!!!!: Fitted for a... - PMRGCAuk

PMRGCAuk

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No! It's Arteritis Not Arthritis!!!!

52 Replies

Fitted for a 24 hour Heart Monitor today after my recent tumble & hospital stay. Very good nurse/technician but who hadn't heard of GCA! We encounter this so often! Even the word Vasculitis can draw a blank! Think we ought to organise an aeroplane leaflet drop!!!

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52 Replies
HeronNS profile image
HeronNS

Haha! That and, "Fibromyalgia is a a completely different disease". Whoever names these ailments has a lot to answer for (although polymyalgia rheumatica is a great improvement over "senile rheumatic gout").

How about a little plane pulling a banner? signs.com/blog/aerial-adver...

in reply to HeronNS

Yer! Medical Latin lingo don't help much eh! Descriptive most of the early stuff! (same in plant world with genetic & new classification.) SRG! well who the hell would want that!! Better branding is what we need here! Might catch on then! New sparkling name required!

Good idea with the banner. Wouldn't work here though! No one looks up! Unless it's a police chopper! Too engrossed in their own media world & who can blame them! It's just they have no fear of traffic & appear to talk to themselves!

Constance13 profile image
Constance13 in reply to HeronNS

I remember reading “senile rheumatic gout”. I wonder what our 40+ friends think of that?

HeronNS profile image
HeronNS in reply to Constance13

I've always said that no matter how old I might get I would never admit to having a disease with a name like that!

Constance13 profile image
Constance13 in reply to HeronNS

I remember getting on a bus just after I was 65 and the “schoolboy” driver asked “are you a senior citizen” I hadn’t thought of it till that moment😂. I thought “blimey, does it show up so quickly”?😂😂😂

HeronNS profile image
HeronNS in reply to Constance13

Well at least you had actually passed that milestone birthday! I think the wheels on my bus started to come off with the advent of PMR shortly before my 67th birthday.

Constance13 profile image
Constance13 in reply to HeronNS

I was 72 when PMR hit me practically overnight. Just as the clever doctors say that is when it usually starts.😏😒 Unfortunately it hasn’t left me in the 2 to 5 years they predicted.😢 Now 6 1/2 years and still can’t get below 4 mg.

Chrob profile image
Chrob in reply to Constance13

When I first got the (bus pass ) I only let the driver see it discretely under my coat and one time I forgot it ,didn’t know if I was pleased or not when he let me on without paying.

Love, love, love your post title!!!! How many times have I said that? Hahahahaha.

So WoW, maybe the heart monitor will shed some light... I hope! Feel better! Let us know results! xxx

in reply to

All wired up M!! Could be a spy or reporter! The fantasy of it! Wires dangle a few inches too far for comfort though! Have to take care always we do!!

in reply to

Been there.... done that... got the T shirt! Watch those wires!!!!!! 😳

bunnymom profile image
bunnymom

What I get is... What is that thing you have again? Sweet little tree. Wishing you well.

in reply to bunnymom

Yes. Sure most of us get that response! Not a big hitter is it? I'd never heard of PMR/GCA. Medical world is a mystery of diagnosis & what can be done about it! Plus!!

Thanks. Grown from collected seed 18 years ago. (looks like a Senkaki hybid).

Mikb profile image
Mikb

One of my best friends kept telling people I have arthritis. Until her husband told her to stop....he said if you can't remember the proper name then don't tell them anything lol.

in reply to Mikb

Good advice!

I get the "Ohhhh, really? I never knew you had arthritis!"

"Yeah... that's because, I don't!"

Longtimer profile image
Longtimer in reply to

Perhaps we should have PMR tattooed on our foreheads...with enquire within.....

What gets me the most is when people say....oh is that the one where you are tired all the time.....and I`m usually thinking....but not too tired to clobber you!....aren`t I awful, it`s one of those frustrating days as you can guess!

Oh well, this too shall pass...

Longtimer profile image
Longtimer

Brilliant idea....

"Chronic illness; no one gets it until they get it, and that's not something I wish upon anyone." ~ Unknown

....well, maybe there's a couple people! 🤔

NO JUST KIDDING! 😉

PMRpro profile image
PMRproAmbassador in reply to

Oh - I can think of a few believe me!!!!!

in reply to PMRpro

🤣🤣🤣

Yellowbluebell profile image
Yellowbluebell in reply to

can I blame the fact I can be a complete bitch at times and don’t suffer fools lightly on pmr?

PMRpro profile image
PMRproAmbassador in reply to Yellowbluebell

Why not?

ShirleyAb profile image
ShirleyAb in reply to Yellowbluebell

How lovely to read this - just how I feel too! Thank you.

in reply to

Not like you to kid Kidda! None of us are Mother Teresa! Well! Perhaps when it calms the rage sometimes!!

in reply to

Hahahahah! I'm definitely NOT Mother Teresa! ...but I really wouldn't wish a chronic illness (especially PMR /GCA) on anyone... even my ex-husband!

And that says a lot!!!!! 🤣

in reply to

Some hurt I sense there M!.......... Just wrapping up the wires. reader & maybe a wakeful snoring night on my back for me! Hope the reader doesn't register the wine! Have a lovely sleep M. You have had a lot of shit to cope with. ATB

Telian profile image
Telian in reply to

I am!! That's my 'written down' name...

in reply to Telian

Sorry T! No offence!

Telian profile image
Telian in reply to

Me take offence! - no apology required, you're completely exonerated! No-one knows my 'official' name except teachers or doctors - parents never called me it either - always Terri - maternal grandmother was a big churchgoer so think it was to appease her.

SheffieldJane profile image
SheffieldJane

It doesn’t exactly fill you with confidence. I hope the results are just fine. I had the 24 hour monitor before diagnosis, when they were still seeking something else to label me with. I remember my daughters being very odd, ignoring the wires poking out of my t shirt. I suppose it looked faintly dramatic a no no for mums.

in reply to SheffieldJane

The pack is much smaller than the one I had 20 years ago Jane. That was the size of a house brick! Nothing much to write down in the diary. Just the usual A.F. flutters during the night. Pleasant journey back to the QE by train this morning for me, Hope you have a good day.

SheffieldJane profile image
SheffieldJane

It’s a good route that. I worked in Northfield Jobcentre in the 80’s and had a baby in Selly Oak, The QE and The Sorrento. Husband worked in 5 Ways.

You’ve got the Tory Conference haven’t you? No wonder you’re fluttering. Take good care.

York54 profile image
York54 in reply to SheffieldJane

Jane, I too had one baby in Sorrento and one in Selly oak. Both gone now!! Knocked down for new housing!! It's a small world. I live in Kings Norton.

SheffieldJane profile image
SheffieldJane in reply to York54

I loved the Sorrento! I got a boy there. 😃 ( no connection but it was a happy, personal experience.

York54 profile image
York54 in reply to SheffieldJane

My son, now 36, was born 6 weeks prem so in SCBU. The staff were wonderful. He was in there for a month......happy , grateful memories!! ❤️❤️❤️❤️

stellafmdm profile image
stellafmdm in reply to SheffieldJane

I used to work there, (ex Physio!) has anyone ever tried teaching pelvic floor excercises to non English speaking mums? !!!

SheffieldJane profile image
SheffieldJane in reply to stellafmdm

You don’t Think we actually did them do you Stella? 😉

in reply to SheffieldJane

We also had riot in Dale End yesterday with stabbings that are sadly becoming commonplace nowadays!

Selly Oak has totally gone other than a few Victorian red bricked. Posh big housing estate now built. Sorrento converted into flats. Parts of the old QE still being utilised. Time rolls on!

Yes it's a good route & easy on the eye only a short walk to the hospital from University station & it's free after 9.30 a.m. Hooraah!!

Gosh another with a heart monitor, a month ago I'd never heard of such a thing, then my sister, a friend, various other folk now you Pepperdoggie, it must be all the vogue! As for describing our illness I'm so fuzzy headed most of the time I get the acronym wrong or mispronounce poly..etc. so I tend to say I'm ok, will get better but a bit doddery at the moment! Fancy falling over at your age, as my mum would say, pick your feet up! Just been reading the health benefits of giving up alcohol, sober October, that's me till my birthday at the end of the month, daughter putting on a parrty, can't resist champagne!

Telian profile image
Telian in reply to

I've had one too recently....

in reply to Telian

I hope you mean a glass of champagne not a fall, or a heart monitor?

Telian profile image
Telian in reply to

Don’t think the Champagne had been mentioned at the time but I’ll make one - no falls though - unless I have one too many of course!

Musn’t joke an elderly neighbour fell out of a tree!!!! last month - survived the op for broken collarbone and hip but succumbed two weeks later to heart failure! God bless her, she was 86 and ‘healthy’...

in reply to Telian

Yes my brother in-law fell out of a tree and died, healthy and in his late 70s, I think I'd rather die healthy than all this illness business. PS sober October only lasted two days!!!

Telian profile image
Telian in reply to

Goodness it's happening more than we realise, sorry to hear about your BIL. There is something in going while you're healthy!

Never mind it only lasted two days - cheers!

in reply to

Yer that's me Chris "A dedicated follower of Fashion!! Must give the old liver a rest myself but I keep forgetting!!! ATB

prunus profile image
prunus

I too have found the same - but when I was finally diagnosed with GCA I had never heard of it either. What I did find surprising was when I gave my husband's Community Matron sheets about it she never bothered to read them. My own Consultant said to me I would be teaching the medics because I would know more about it than them.

Telian profile image
Telian

Even I thought it was called that at first hearing! The number of times have had to spell it out to, as you say, nursing staff!

Love the Acer I've got a couple that colour - well established now but took some nurturing....

Hope your heart results are not bad, let us know.

in reply to Telian

Still beating at the moment T! Seems to speed up whenever I encounter the medical world!

Grew quite a few Japanese Maples from seed collected off the ground. Never knew how they would turn out because of cross pollination. They do prefer a sheltered spot out of the wind. I love Japanese style gardens with Bamboo & water features.

Telian profile image
Telian

Man after my own heart, 'scuse the pun! Think they call it white coat syndrome...

Wow - you grew from seed.... I have a beauty 'if allowed to grow' but keep it small since had decking put in, wouldn't have it removed so is within the edge of the decking, looks nice but can't allow it to flourish to it's tree form where it is.

in reply to Telian

Ha!.... They do take pruning &training quite well I've found. Very popular with Bonsai growers. Seen some beauties too. My best one hasn't turned colour yet & is 10' high.

Telian profile image
Telian

I do prune mine, haven't got into Bonsai though. Colours haven't changed yet and my 'decking' one was easily 10ft high before I cut it down, it was a beauty in it's natural glory, I've been considering taking it out of the decking area to enable it to flourish and now talking to you I want to do it, right time of year coming up too. Thanks Pep.

You mean digging it out ! Could be a big job that! Probably would need a 1/3 pruned off too so it wouldn't dry out in the Spring. Can't you move the decking!! Only kidding. Same problem now with a lot of our shrubs. Sometimes it pays to quite ruthless with the pruning. Good luck with that one though.

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