One good thing about PMR

[OutdoorsyGal]

It can bring people together. Because of this forum, I’ve recently met a fellow PMR sufferer from my town. She looks great, so I never would’ve guessed if I’d passed her on the street, and she’s the only living person I know with PMR, so it’s nice to have a sounding board. Plus we can swap doctor references. Thanks Health Unlocked!

[Yellowbluebell]

Really glad you have made a new friend. I too met a local suffering from pmr and we meet for coffee as often as we can. Its definitely a bonus of the forumxx

[PMRpro Ambassador]

And I have, through PMR and the forums, developed friendships in Canada, the US, various bits of England and Scotland, which in most cases have resulted in bacon butties, overnight (and longer) visits and great fun. No-one local - language barrier there! My husband has looked utterly sceptical every time there was a "meeting" planned but now he doesn't question it.

[Yellowbluebell in reply to PMRpro]

Wasnt there wine involved?!!

[PMRpro Ambassador in reply to Yellowbluebell]

Not with the bacon butty, no ...

[Yellowbluebell in reply to PMRpro]

Oh that was the night before!!

[PMRpro Ambassador in reply to Yellowbluebell]

But PMR wasn't involved there!

[Yellowbluebell in reply to PMRpro]

🥳

[Yellowbluebell in reply to PMRpro]

Tbh my other half would have looked at me in a very sad way if i suggested meeting people from online but i dont hink he would question it now knowing the friendships both online and off i have.

[Blearyeyed]

😂😂😂😂

I presume you mean she's the only ,' living person' you know to meet face to face with PMR , otherwise there is definitely something rather important that the Doctors are neglecting to tell the rest of us about our physical condition .

Glad you have a not so Faraway Friend for support too , I'm sure you will both make life a little happier for each other xxx

[OutdoorsyGal in reply to Blearyeyed]

Yep, in real life friend. Of course I consider you all on PMRGCAuk to be friends, but more of the imaginary friend category. Good for comforting oneself, but can’t go out to lunch with. (Though some might argue we’re all “out to lunch” on here!)

[Blearyeyed in reply to OutdoorsyGal]

😂😂😂😂😂😂

Especially me , not just out for lunch , but dinner and breakfast too!!😋

I'm liking the idea of being an ' imaginary friend' though , in fact , with some of the stuff that happens to me , people like Yellow Bluebell and Scats would probably say I am in the land of the fairies , and my life could only be true because you couldn't make it up!

" Real" Hugs xxx

[Yellowbluebell in reply to OutdoorsyGal]

Bee has been in the land of something for ages just not sure its the fairies!! The jury is still out!!

[Yellowbluebell in reply to Blearyeyed]

I have you as a special friend but just not on the doorstep which would be nice.

[Blearyeyed in reply to Yellowbluebell]

😘😘😍

[Hidden]

Interesting. The biggest problem I find is that people don't understand what we can do or not do. I belong to a club which is run by volunteers. We are, or should I say they are, building a small gauge railway to run model steam locomotives which pull passengers on a club track. When I tell them I can't do something like digging holes for railway track, they think I'm shirking and say things like "you look as fit as a fiddle" pull the other one! 🙄😢

[Constance13 in reply to Hidden]

That's the trouble with PMR we look so well - or most of us do. Mind you 'they' wouldn't think so if they could see me first thing in the morning. I sometimes get the fright of my life when I look in the mirror!😂

[Longtimer in reply to Constance13]

I have just done that...quite agree!!

[Hidden in reply to Constance13]

Likewise 🤗

[OutdoorsyGal]

I had to drop a canoe to prove I couldn’t carry my end anymore.

Not on purpose of course.

[Constance13]

Love the "only living person".🤣🤣🤣

Still I suppose we all know/knew the 'non-living'. 😀😃

[OutdoorsyGal in reply to Constance13]

My Mom had it, but she’s gone now, so I can’t ask her anything about her symptoms or treatment.

[Hidden]

There are two other women with PMR in my village of less than 500. Both have nothing to do with computers and 'do as they're told' they think I'm mad taking charge of this illness myself. Both have had flares which I think is tapering too fast but they are wary of my opinions so we rarely speak to each other.

[Q-owl in reply to Hidden]

Perhaps you could suggest reading Kate Gilbert's Survival Guide. They could borrow it from your local library, if you're lucky enough to still have one!

[Highlandtiger in reply to Hidden]

How did you find out they have it too?

[Hidden in reply to Highlandtiger]

Same route as the rest of us.

[Hidden]

Good idea, yes we have a library and a mobile one too!

[PMRCanada]

It is my dream to meet another living person in my area who has PMR/GCA. I’ve tried to set up a few meetings with folks to no avail (sigh). I believe I’ll have to travel across the pond to finally connect organically with anyone who has these conditions. Canada, being so big, makes it difficult.

I will say that having PMR has resulted in some positive changes in my lifestyle and mindset. I’m more mindful about what I eat, how often I exercise and when I rest. I also have more compassion and empathy for people who are ill/struggle.

Good for you for making that “in person” connection!

[Mikb in reply to PMRCanada]

If you are ever in Toronto I will meet you for coffee!

[PMRpro Ambassador in reply to Mikb]

If everyone put their nearest hometown on their profile they might find they get some unexpected demands to visit!!!! I knew where MrsNails lives - so we were able to meet. I hope she enjoyed it as much as I did

[Blearyeyed in reply to PMRpro]

😂😂😂😂

So glad you got to meet up this Summer but I'm giggling because your wording made it sound like you hunted her down like a Professional Assassin!!😋😂😂

' I know where she lives " sounds like a line from a London Gangster Movie!!😋😘😘

[Hidden in reply to Blearyeyed]

😂😍

[Robinre]

Hi, I found out that my friend's husband had PMR that only lasted one year. The doctor was hesitant to release him because of the short duration but it never came back. Also another friend has a sister with PMR and she has been on Prednisone for a few years. Before being diagnosed she had to go to an Emergency Room because she was in so much discomfort. I have been thinking about starting a support group in my city (advertising through the Sr. Center). My town has about 175,000 people so I am sure others suffer from PMR. I have been very fortunate that I find this web-site by accident and I am always promoting it when I see my doctors. In fact I sometimes print out information from the site and give to my doctor and tell him that he needs to be giving his patients who have PMR handouts such as these when he treats them. Fear was my biggest concern when first diagnosed. Then I found this site and had hope. Robin

[OutdoorsyGal]

Since we all use aliases, and few post a photo, I suspect we would be circumspect about posting our hometowns publicly.

However, Montana is “a small town with a really long Main Street,” so just naming the state was enough to make the connection.

[PMRpro Ambassador in reply to OutdoorsyGal]

I meant in terms of region - if you live in a smaller place in the UK, naming the county town won't identify you but would make contact from others an option. I want to know if someone lives within an hour or so of a given point, I can ask privately if that makes it 2 hours from where I am.

[Telian]

Mine's a bit nearer to home. I have GCA/PMR and my next door neighbour's recently been diagnosed with both too! What's the chances of that? We can't win the lottery though! He says his family have no idea how he feels - think most of us get that one.

[PMRpro Ambassador in reply to Telian]

So you have long chats over the garden fence ...

[Telian in reply to PMRpro]

I tend to go round as he is blind now - he lives on his own poor soul........

[PMRpro Ambassador in reply to Telian]

Oh - is that the guy whose GCA wasn't recognised?

[Telian in reply to PMRpro]

It is......