I certainly did not mean to offend with my previous question . It was an honest enquiry and not at all intended to be “rude”
I think I will withdraw from the forum if this is the sort of response that people give. I appreciate we can all be felling unwell or at a low ebb but had hoped that comments or questions would be viewed in an open minded way
I assume this is partially directed at me, and if so, I’ve already answered your previous post. As I agreed - it was a honest question, but maybe you should have left it at “why had I never heard of PMR before my diagnosis” and not include the following sentence.
You would have got a lot more information and probably sympathy that way.
It entirely up to you, but you will learn a lot from many people on here if you stay.
We are sympathetic having been through PMR - and GCA.
I’d take a breath there. My feeling is that to withdraw now means that you would be losing out on a hugely useful resource and compassion. For the sake of a sticky bit (for you) in one response from someone who has gone through hell and back and now supports others with her heart and soul, it isn’t worth the upset. The responses to your post were all helpful in my view but it wasn’t me doing the asking. I think that if you persevere you’ll come to see it as a one of the few places you can get well informed advice and people do rally round in times of stress. You’ll also see how much effort is put in by many, most of whom aren’t feeling 100%, get no pay or official support. The fact that these two conditions are life changing yet don’t get much money, recognition or attention is a travesty which means there will be raw nerves here and there. Occasionally they get stepped on. So I’d say, have another crack at it 🙂
I have just checked your previous post and can assure you that no insult was intended. Dorsetlady is one of the longest serving members of the forum and one of the most respected. I did not read any intent to insult in her reply.
This has always been a friendly and supportive place to visit as far as I am concerned and many of us here are very grateful for it's existance.
Please hang around.... You wil get used to us all and our quirks (not that I would ever say dorsetlady quirky😉). Believe me I have been on and off the forum like the proverbial, but come back for the support and good advice. As others have said dorsetlady is a stalwart and as her gca is in remission we are lucky to have her around. Most in remission just leave. Hope you stay.
This forum has been a godsend for me with its wealth of knowledge and support . Stay with it and you’ll find that too.
All the best 🌸
Thanks
For many of us including me the pmr journey was fairly uneventful in the first year once on the steroids—but the second year was far more taxing so do try to remain. Doctors including rheumatologist do not always have the answers but sometimes my friends here do!
I think your own offer to become a spokesperson once you're established on your own road to recovery was very generous and I very much hope that you stay around. I, too, was upset by some banter in an early post when I first joined (actually Patient forum in that case, but the same people) I thought I was being laughed at. Of course I wasn't, in fact that particular exchange had nothing to do with me, although it was on a thread that I had started so I assumed it was.
That's the problem with social media. No eye contact, no body language, no mechanism to adjust language in response to the other person's reaction. And sometimes even harder to cope with as most of us are unwell to some degree or other.
Thank you for your understanding
To react by saying you will take yourself away from the group is neither helpful to yourself or a reasonable reason to lose out on the massive amount of help this forum gives.
You assumed wrongly that nothing has been done to further the progress in these diseases because we all lack the energy or interest which is so far off the point its ridiculous and quite rude for someone who has only just joined our forum. We are all interested in progress and do our best to help.with this. Some people on here suffer from a lot more than just one disease. Others are in their 80's and have already done their fair share of promoting pmr/gca. Members have been involved in surveys and such in the past which you as a new member would obviously be unaware of unless you read everything on the forum. We as moderators and dorsetlady as a volunteer all do this whilst suffering from either pmr or gca. I think that means we are doing quite a lot and pmrpro is actively involved in lots of work being done investigating the diseases.
Maybe if you still want help and support you will stay around and realise that this forum does a lot of good supporting the many members we have. YBB Moderator
I have been participating in this forum since September and while people have given some great advice I have also been on the receiving end of some really quite rude and hectoring responses. I guess that is the problem with on line forums.
I found this forum after several years of PMR and GCA and it was a revelation. Although the GP who gave me my original diagnosis was informative and aware of the problems of tapering (he also gave a warning of what to look out for should GCA occur - which it did) - I moved away from his area and was very much on my own with these illnesses for several years. To have access to the accumulated knowledge of fellow sufferers and of experts like PMRpro and to the gentle wisdom of Dorset Lady is a privilege .
We like to hear when people are happy with the forum and that we have been able to support you on your journey. YBB
I am sorry to have prompted so much anger
It was an honest question which I hoped was apparent from my post ! Heigh ho
Not anger at all from me, just pointing out that a lot goes on that you wouldnt know about yet as a brand new member. As a new member you can also help promote just by talking about your disease. Everyone who hears about these diseaaes is a bonus. Dont just give up on the forum because you dont like the response to one post. There is more information to be gained on here than almost anywhere else. YBB Moderator
Without the body language it is easy to mistake what the person posting really meant to convey! Don't let us forget that we are all very unwell with this wretched disease!!
Hi again.
No, please don't go away. As others have said this is a really fantastic forum, and you would miss out.
I can but endorse all that SnazzyD said. For me DorsetLady is one of the best.
Best wishes
Paddy
Thank you
Please explain what is PMR. Thanks. New grandson in the family an I am having difficulties to carry the baby arms pain!!
Having difficulty in getting up quickly and walk. I want go to my GP to get investigation.
Thanks.
First of all, google polymyalgia rheumatica and read about it there. Second, try posting this question as a new thread.
And for a start, have a wander around this site:
pmrgca.co.uk/content/home-page
where to the left you will see a menu and the second topic is About PMR and GCA.
Stay and get the information you need.
Please stay! I'm a new person as well and my feelings that being diagnosed with GCA we're sort of the same issue been diagnosed with PMR. I was misdiagnosed and consequently he lost the sight in my left eye.
So I guess I sort of got on the emotional rollercoaster which was only enhanced with high doses of prednisone.
I went back and read your postings, not just the initial one and you sound like a sensitive and compassionate person who would not have intentionally offended anybody.
I felt very alone until I found this far and now I have Companions and resources which have made my six month Journey much easier than it would have been had I remained alone. Please stay because I know you will find the benefits worthwhile.
Welcome and I'm sure you'll be an asset!
I dictated that some my telephone so I hope there's not too many mistakes😉😉
Thank you for your understanding
Some of that surely got messed up in dictation...but if you read it out loud fast..... it all makes sense.
It is 50% understanding and 50% relating to all the questions you had...no harm, no foul. I just hope you will hang around.
Not sure what you are referring to
I did not see your post but would endorse what others have said about DorsetLady. She has been so kind and helpful and made up for inadequacies in our NHS/GP services. Sorry but she is a cool dude!
I didn’t see , nor read your post. To criticise the good people on this site,however is very sad to Read.
I’d apologise , take a step back , and realise how foolish you would be to opt out.
I would suggest you read my post then. I was not criticising any one! It was an honest question
It’s the perennial problem of the gap between the writer’s intention and the reader’s understanding of what are just letters on a screen. No facial expression or change of tone in the voice to guide the reader. Emojis can help but they are pretty clumsy. Don’t leave the Forum. It is excellent. And it sounds as if you are willing to help as and when you can. 😀❤️🥳👍
Thank you and to all who took my post in the spirit in which it was meant.
I find it very upsetting that some have responded without reading my post properly if at all.
As someone newly diagnosed ,this is the last thing I need and has brought me to tears so I’m sure you can understand why I would leave the forum
This is why until now I have avoided social media and my fears have now been confirmed
Thanks
NewPMR I’m so sorry you have been upset by this forum. I am just two months in and have found it an encouraging group and provider of much good information. I agree that it is often hard to tell the intent of typed conversation. I would encourage you to stay. I know you will find everyone helpful and encouraging. All the best to you!
My advice to you is to stay. This forum has been an absolute godsend to me. The only reason I knew about PMR and GCA was because I worked in a nursing home where we had one resident with a PMR diagnosis. I researched it a bit then as I wanted to see how and if I could help this person.
Then some 3 years later I was diagnosed. It took me a few years to find this forum and Kate Gilbert's very informative book.
Having previously worked in a global IT company at the very start of email and social messaging I was lucky enough to attend a course on interpretation of the electronic written word. Seems like a lifetime away but it gave me some very valuable tips. One was that, unlike face to face, messages are without body language to back them up and for this reason alone they can be misinterpreted. Another tip, and this one I have really applied over the years, is never put in an email or message anything that you would not want to see on the front page of a tabloid newspaper. So I pass everything I write through that set of filters and only then hit the send button.
I have still found on occasions I get misunderstood but this is part of being human. We all see things from our own experience, perspective and reality which is not the same as anyone else's reality.
I do hope you stay as this forum is excellent, but again, that's my experience and I can only speak from that position. Welcome xxc
Thanks. I always apply Obama’s policy of never immediately pressing send on an email and leaving it for an hour or so as I did with my original post
I did not read your post or the reply, however, I can say that the information I have received from this group in the past year has been invaluable. When people are not communicating face-to-face it easy for misunderstandings to occur. We all need to be tolerant of each other, and assume any perceived slight may be within ourselves.
THIS forum has been a life line for me.
Got diagnosed in Dec 2018. No real info given to me apart from the need to taper Prednisolone asap with no mention of flares etc. Always been fit and think PMR was the consequence of 2 major back surgeries in the summer of 2017.
Have learnt so much on this forum...info that your GP will not give you..
Stay with it. 😊
Hi NewPMR
I was intrigued by the title of this post so did read your original. I too had never heard of PMR/GCA until I started googling my symptoms. I have since gained much invaluable information from this site which I came across by chance.
I'm sure, well in fact, I know there are plenty of people trying to increase awareness but that doesn't alter the fact that many of us had never heard of this condition until we got it.
Fair play to you for wanting to help increase the awareness as it can only be a case of the more the merrier and I applaud all of you who are doing something to help.
At the end of the day, we all want the same thing.
Update on previous post "Any Advice please"
Update on my previous DEXA post
My Post Has Vanished!
PMR vs Fibro - follow up to my post
