Elevator speech for PMR?

[Richnroo]

Hello, does anybody have a quick elevator speech that they use to explain PMR to friends and coworkers that ask about the condition? You know, when somebody wants to know about your condition, they’ve never heard about it, and you want to explain it in as few words as possible without getting into much detail? I’m having trouble coming up with a quick explanation that makes sense and lets the person truly know what the condition is. Many thanks.

[PMRpro Ambassador]

I'm sure I did! Will look and see if I can find it ...

Like having flu but permanently and feel like you are wearing a top to toe neoprene suit 2 sizes too small so you can't bend any joints! You suddenly feel 20 years older overnight. Can't turn over in bed, can't stand up from the toilet - and even struggle to wipe your bum!!

Maybe you can find statements in this paper by Helen Twohig, "I suddenly felt I'd aged"

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

[Richnroo in reply to PMRpro]

Excellent! Never thought about the neoprene suit two sizes too small but yes!!!!

[YuliK in reply to PMRpro]

Very well described PMRpro. 👏👏👏👏

[123mossie in reply to PMRpro]

And you can’t pull your knickers up, or even get them on in my case!

[PMRpro Ambassador in reply to 123mossie]

Yes - I still remember the lassoing action!

[AussieMel in reply to PMRpro]

LOL...I shouldn't laugh but some of that rang so true. Not being able to get up from the loo, not being able to put a shirt over my head, looking at the stairs like they were Everest.

This bloody disease - so awful.

[Richnroo in reply to AussieMel]

It really is awful. And very hard to understand if you don’t have it.

[Croft9232 in reply to PMRpro]

Love it 😉to add, dropping bowls of cat food from waist height as I could not put them on the floor, then crying at the mess I had made..Showering and not being able to wash my bits ( as my grandchildren call them )

[PMRpro Ambassador in reply to Croft9232]

At least we can get OUT of a shower! Bath? What's a bath?

[PMRCanada in reply to Croft9232]

My hubby had to come in the shower and lather me up and wash my hair. Certainly not as sexy a time as when this happened pre-PMR.

[DorsetLady PMRGCAuk volunteer]

Try this or similar -

Your immune system has stopped working correctly so your body is in effect fighting itself.

In your illness, it causes your blood vessels to become inflamed so the blood doesn’t get around to feed your muscles in your shoulders, arms,hips, legs which results in stiffness, pain and fatigue.

The only way to control those symptoms is to take steroids until such time as the illness goes into remission.

[Richnroo in reply to DorsetLady]

Oh DorsetLady that’s good! Very succinct!

[Sukama in reply to DorsetLady]

Thank you for this explanation. It is great.

[PMRCanada in reply to DorsetLady]

Perfect description DL!!

[morrison in reply to DorsetLady]

Absolutely, in one my dear. Couldn't have said that better myself, simple and correct. Hope you're ok my dear. Xxx

[DorsetLady PMRGCAuk volunteer in reply to morrison]

Yes thanks, and you?

[jinasc]

Like DL, I used to say, my body is attacking itself and it cannot be cured just managed till it decides to stop it.

[whitefishbay]

I always say it’s like getting arthritis over night but bilaterally. Plus POLYMYALGIA in Greek is pain in many muscles. I also do it is a common disease no ones ever heard of.

[Daffodilia]

I just say it makes you stiff and painful all over - auto immune disease that can be treated with steroids - people soon forget - they have their own worries - I avoid telling anyone if I can

[PMRpro Ambassador]

Not a good move to mention arteritis because they think it is arthritis (even nurses and other healthcare professionals) - and all arthritis is osteoearthritis and a sore knee/hip and you can have an operation if it is that bad!

Severe inflammation of blood vessels? That can stop blood flow to some nerves and you can go blind ...

[Richnroo in reply to PMRpro]

I agree PMRpro. I want people to understand without going glassy eyed at my explanation.

[Loopy65]

These answers sum it up so well!! ‘Lasso action’ nearly made me snort coffee out through my nose yet SO TRUE!! Gosh, I’d almost forgotten how awful I was pre Pred!

[borednow]

After reading your post, I realised that nobody has ever asked about me about my PMR apart from my ex husband! Very strange ..........................

[Richnroo in reply to borednow]

Maybe you hide it well?

[DorsetLady PMRGCAuk volunteer in reply to Richnroo]

Well the trouble is -

“you look so well,”....... 😳

[borednow in reply to DorsetLady]

Precisely. The dogs know how bad it's been at times and they're my little saviours!!!

[ChinaWuntoo]

How about incorporating the word 'adrenaline'? People understand that adrenaline makes it easier to cope with things. So it could go something like this (without giving PMR it's full name)...

I've got Polimyalgia which means I need to take steroids which means my body doesn't produce adrenaline: the disease and side effects of the steroids both mean I suffer from severe fatigue and must take life very slowly or I get very ill.

[HeronNS in reply to ChinaWuntoo]

A quibble maybe, but as far as I know it's cortisol production (by the adrenal glands) which is damped down, and simultaneously replaced, by the pred.

[ChinaWuntoo in reply to HeronNS]

Thank you.

[Npp20]

Sudden onset, extreme, unusual, large muscle pain.

[tangocharlie]

i think something similar came up a while ago but can't remember the thread now. I say I have an automimmune disease where my body constantly attacks itself causing all the major blood vessels and muscles to be inflammed. And the only treatment is steroids with horrible side effects like this fat tum and face. Usually shuts them up.

[Richnroo in reply to tangocharlie]

Perfect. Exactly the type of thing I’m looking for. Sums it up in a few sentences..... and shuts them up! 😂

[tangocharlie in reply to Richnroo]

This isn't the thread I was thinking of but a similar one I started a few years ago, I loved the responses

healthunlocked.com/pmrgcauk...

[Richnroo in reply to tangocharlie]

Thank you!!!

[herdysheep]

I enjoyed reading that thread, thank you. It is a dilemma, isn't it? I used to think I'll flatten the next person who says I look so well, but at least now I hardly see anyone. Just as well as I haven't the energy to fulfil my wish and don't need any more disappointment.

[Richnroo in reply to herdysheep]

It sure is a dilemma! And I just successfully used a combination of all of the above including the neoprene suit. Worked brilliantly. I’ve found a lot of people try to say things like “ oh have you checked into getting your thyroid tested” or some other way try to counsel me that I maybe haven’t been quite diligent and surely it’s something else. Ugh!!

[PMRpro Ambassador in reply to Richnroo]

Surprised you haven't had all the dietary recommendations as well!!!!!

[Richnroo in reply to PMRpro]

Oh yes I’ve definitely had that too. Gluten specifically causes all ills. I have one coworker ( a nurse mind you!) That insists it’s all likely to be related to my thyroid, my female hormones, and I really need to get off gluten and dairy.

[PMRpro Ambassador in reply to Richnroo]

I do wonder sometimes about what they teach at nursing college!!!!! One daughter is a nurse - she wonders about some colleagues too!

[Richnroo in reply to PMRpro]

I know! There are times I really do wonder.

[Richnroo]

Oh yes that’s a very apt description indeed.

[HeronNS]

Not specifically PMR, but just lately I've been feeling like an old car, you know, the one that's ready for the scrap heap. You make an expensive repair and something else gives out....