Respect and Kindness

[Kendrew]

I just feel it might be a good time to remind ourselves of a few considerations when communicating on our forum.

I've been on this forum for over five years now and when I first joined it would be fair to say that I had no idea what to expect.

During this time, I've discovered that this is a forum that aims to always provide a safe & reliable space to express anxieties, fears, concerns, uncertainties and probably most important of all.... cries for help.

In fact it's a platform to seek or offer help & support on all things PMR/GCA related.

It thankfully does not approve or allow comments that are disrespectful, critical or judgemental of others, and in any conversation where this may be evident, it is stopped immediately through the monitoring and scrutiny from the appropriate people.

Sometimes there are many other issues that people would dearly love to share and discuss here other than PMR/GCA & its associated topics. However, I'm so glad it's made clear that this isn't the platform for those other issues as it then allows for the optimum time to be available for discussing what this forum is truly for.

I've found a wealth of knowledge, support, ideas, advice, friendship and much more through this forum, and know that through continuing to show kindness and respect to each other, our forum will continue to nurture our PMR/GCA needs and continue to 'hold our hands' when we need it to.

[tangocharlie]

I totally agree and always try and play by the rules which are common sense and courtesy to me. This forum has helped me so much in the past when I didn't know where to turn for the right treatment and I like to think some of my posts and comments have helped others in turn. The Admin and regulars do a fantastic job, thank you to all involved

[Kendrew in reply to tangocharlie]

I for one have found many of your posts helpful and they're always informative and useful to others. So thankyou to you too.

[tangocharlie in reply to Kendrew]

Right back atcha! x

[yogabonnie]

You are the BEST!! I used to sneak in my politics but was soundly beaten back and rightfully so!! A good reminder. thanks to all! (anyway you all know my politics I am sure!)

[123-go in reply to yogabonnie]

😉

[Bcol]

Couldn't agree more.

[tangocharlie]

One thing I do get wound up about is when I read about somebody having a hard time because they have been misadvised by a doctor especially rheumatologists who really ought to know better. I find it hard to resist saying something critical and try and remember to say something positive instead, like maybe to ask for a second opinion. It's so tempting to say 'Your doctor is an idiot' but it's better to focus on how to educate them and give them the benefit of the doubt. My eyes have rolled a lot over the nearly 8 years I've been on here though .....

I think your reminder is also about keeping on topic, at least closely related to PMR and GCA etc and if an important topic arises in a thread to create a new Post for it, otherwise some posts get so long things get missed.

[Kendrew in reply to tangocharlie]

Agree on all counts.

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

PMRpro and I always ask members to do just that… but then we do save every post and view all replies.

[enduros in reply to DorsetLady]

Wait. Not only do you find the time for kind, thoughtful, encouraging and USEFUL replies, you read everything???

That is a titanic contribution. Thank you thank you. I can't even understand where you find the time, unless you have some wacky x-person style powers.

Do you have an X-style power to slow time?

[DorsetLady PMRGCAuk volunteer in reply to enduros]

Yes I’m a Viking goddess…didn’t you know?… with one biopic eye, although the other one is snookered… 😏..

healthunlocked.com/pmrgcauk...

between the two of us we have superpowers…but cannot tell you PMRpro’s 🦸‍♂️🦸🏻‍♀️.. just to say we both worked in government departments…

.. now you’ve made me go ‘off-piste’ so I could be in trouble… 👿

[Kendrew in reply to DorsetLady]

Hahaha 😂 tut tut!

[Thelmarina in reply to DorsetLady]

You are Odin and I demand to see the raven on your shoulder…😂

[DorsetLady PMRGCAuk volunteer in reply to Thelmarina]

No I’m not actually although I could be [in real life!’] - apart from the gender - but apparently did have a liaison with him 😳

I am Freyja … and have blue cats not a raven.. 😊

[Thelmarina in reply to DorsetLady]

Perfect! ❤️

[DorsetLady PMRGCAuk volunteer in reply to Thelmarina]

Surely you mean ‘purrfect’..

[Thelmarina in reply to DorsetLady]

😺😸😻

[Longtimer in reply to tangocharlie]

Couldn’t have said it better myself! Hope you are winning the battle.

[tangocharlie in reply to Longtimer]

The PMR/health battle or my ability to resist a rant when I read something that makes me go 'ffs!'? The former is like being in a sinking ship but the orchestra is playing on. For the latter I need to keep applying laughter, a good soh and mindfulness .... and patience .... which is not without great effort on my part....😆

[Longtimer in reply to tangocharlie]

Exactly, such frustration in so many ways. Went tp GP last week, lots of blood tests, long story cut short MRI result showed I need to go to Neurology.....she said she would refer me, got letter yesterday, had to read it twice.....it said there are NO appointments available!....they will contact me if any do come available!.....oh lucky me......that's when I can swear! ......deciding what to do next....

[tangocharlie in reply to Longtimer]

Best to PM me or start a new thread with your news x

[Longtimer in reply to tangocharlie]

Will do👍

[Pollyone in reply to tangocharlie]

So interesting re rheumatologist comments. I’ve just got a letter after 8 months struggle on steroids and said no sign of PMR! It took 8 months to get appoint,ent and when he said this at the appointment I said don’t u think it’s because I m on steroids?. I forgot one day to take them in a muddle and couldn’t get up the stairs or out of bed easily. Classic symmetrical pains prior. My bloods look ok but maybe it’s the steroids again helping! Left me a bit def.ated to say the least as I’m struggling to get dosage down without aches.. heyho! Don’t think a rheumatologist should need educating.

[PMRpro Ambassador in reply to Pollyone]

A lot of them seem to!!! Some seem to have no idea WHY they put us on steroids!

[DorsetLady PMRGCAuk volunteer in reply to Pollyone]

Don’t think a rheumatologist should need educating.

No they shouldn’t, but sounds as if yours does…if he thinks that PMR goes just because you are on steroids then he’s mistaken - it only controls the inflammation caused by the underlying illness, it doesn’t get rid of the PMR itself. .and that’s why your bloods are low.

And if you are struggling to reduce then maybe you are trying too quickly - how are you doing it?

Small steps and a slow tapering plan may help.

[Koalajane]

well done for pointing this out which acts as a reminder to us all.

I think this is a wonderful forum with lovely, caring people on it who I think of as my online friends.

A big thanks to all who support in various ways on here

[Kendrew in reply to Koalajane]

I truly wouldn't be managing my condition (or life) as well as I do without the support of this forum.

[cycli]

I've learned to tame my acute observations and this forum and contributions here have helped. I've learned patience and tolerance, especially of other peoples opinions. For me that's almost unheard of. That is the silver lining of this condition. Thanks Kendrew.

[123-go]

Well said, Kendrew! I would like to say that it makes me a little sad when people apologise for asking a ‘stupid’ question. Every question is relevant and deserves a sympathetic reply which is what is offered on this forum and what makes it such a brilliant resource.

[greengages]

well said this forum is a like a beacon of light, any questions I have seem to be answered before I ask them, it’s like everyone is in it together to help and advise. Thank you so much to everyone for their kindness , empathy and practical advice 🙏🙏

[par600 in reply to greengages]

Me too! I don’t post but read almost every day.

[prunus]

I agree entirely with all you have said.

[Janet57]

Well said - always a good reminder. We all need to treasure this space that helps us through our PMR/GCA journeys 😊

[LemonZest11]

To be honest, I have never read an offencive post, probably because it may have already been removed, I’m usually a bit late to the party! This forum has saved me. I think we all feel safe and reassured every time we come here to ask for help/advice/support. It never fails, so thank you to all the ones we know, who never let us down. Now I’ve gone off track!!! 😜

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Despite being ahead of us time wise - the majority of posts have been on the site a few hours before you see them, so as you say have been dealt with. The other

In all honesty in most cases the original post is not the issue unless it’s obviously spam. It’s the odd response in the thread, and if you haven’t saved the post you probably wouldn’t be aware.

[Paulamac77]

Hear, hear! Well said, Kendrew. I’ve had so much support and learnt so much about my illness (GCA) through this forum.

[Swdai]

I totally agree . I really do not know how I would have got through the past four and a half years without it. So informative : I had never heard of PMR until January 2020 - just before the pandemic and have come to 'rely' on it to get me through my experience.

Thank you

[Posey1]

Very well said 💐

[Almostaweed]

A timely post. It is the scientific and carefully thought out responses that help us stay on course and navigate these perplexing and for some dangerous conditions. Must try harder to ask myself when posting, is this helpful or is it the Prednisolone talking?

[Elispeth]

Very well said Kendrew. 👏 👏 👏! I don't know what I would have done without this forum over the years. At times (like when I contracted covid in Spain) my health has been dependent upon it🙏 ! Thank you all x

[Steal]

Thanks Kendrew, totally with you on irrelevant issues. This forum is so supportive and informative, and I have encouraged others with the condition to join, but have occasionally hesitated about recommending it when there have been times when you have to plough through unrelated chat. I would never wish to silence anyone, but we all need to be aware and keep the right balance!

[DorsetLady PMRGCAuk volunteer in reply to Steal]

Of course it’s a medical forum, and that is paramount especially when someone has an issue that needs addressing. ..but much like real life after the question has [hopefully been answered seriously] some posts do wander off at a tangent.

If it wanders too much, then anything can reported to the moderation team - and anyone can do that if they consider that the case.

[RosyPollyandMe]

Well said!

[Predderman2020]

Seconded. Especially as we will normally be at an emotional low point, when we ask for advice. I so agree about Pro and Regulars.

[WillOllier]

Very well said

[AtopicGuy]

Well said. Unlike 99% of the internet, this forum also seeks to stick to the science.

[cycli]

What I find most impressive is the patience and perseverance that is paramount in the continuing reliability of those like PMRpro and DL who read EVERY post and unswervingly answer each with a constructive comment. For my part the dedication shown over the years is awesome. I don't read every post or even comment much. I am probably too bound up in my own striving to concern myself unduly in everyone's issues. When I do comment or post I try to make it constructive and positive. That's the best I can manage . My congratulations to all those less selfish.

[tangocharlie in reply to cycli]

Well said, they all deserve a medal

[Bluesew]

Totally agree with everything you’ve said Kendrew. This forum has been a lifeline for me over the last few years. I am so appreciative of all the advice and support.

I just wish I could find the same support for some of the other medical issues I have recently developed.

[DorsetLady PMRGCAuk volunteer in reply to Bluesew]

There are plenty of other forums… but not so forthcoming as this one.. 😊.

But I think that’s because many new patients have never heard of PMR or GCA before they get either/both.. and neither has the wider world. so ask more questions and engage more because of that.

Most people have heard of heart issue, diabetes, arthritis, cancer etc…

[BartsDad]

Although I haven’t posted much I do read this site nearly every day and the folks here have had a very positive impact on my well being for nearly a year. My only addition to this thread would be based on my experience taking 60 mg of prednisone per day. Given that I can’t imagine anyone ever going “off the rails”. For further confirmation consult my dear wife😜

[SheffieldJane]

I agree with you 100%. We seem to have managed to avoid the trolling that infects so many other sites. The years long dedication of particular women is an important factor in keeping our culture kind.

[Kendrew in reply to SheffieldJane]

How are you doing?

[Hunter134]

I totally agree with you.Well said and most people on here try.Very thankful for all the responses I've had on here.

[KASHMIRI1]

How very well said. I completely agree with you.

[Blackcat1M]

thank you for expressing how i think about this forum it has saved my sanity many a time thanks to all of you and especially PMRpro and DL 🌼❤️

[Dorsetdream1]

Thank you Kendrew, this site is helping me immensely and I am amazed at the wonderful, quick and helpful responses I have received, especially from Dorset Lady and PMRPro.

[Zebedee44]

Well said Kendrew.