Thanks Scats. I won't be leaving. The people on here are so warm and supportive and the information on PMR much clearer than from the expected sources!
I'm very glad to be on here. I'm still giggling at Mark Benjamin57's diagnosis of my SBS! I thought about it in Town today and laughed out loud, thus reinforcing the diagnosis of Slightly Bonkers Syndrome. It's good to laugh. X
Oh sod it i forgot about the parish council and the unfortunate incident of the inflatable crocodile, mind you the fairy light fiasco was not my fault it waa that stupid ladder!!
You may recall the ladder was sent home in disgrace to my slightly mad organ playing neighbour. He probably nobbled the ladder because my other neighbours got to see the crocodile incident and he didnt!!. It was decided by the parish council that our lights are to stay up just in case there was a repeat of last years fiasco!!
Don’t worry Christine you stimulated a lively debate, gave folks a chance to express their views and a great deal of silliness occurred also. I have been on this site almost daily for 3 years. It is a robust site that seems to sort itself out organically. Please don’t go away. This disease makes us all nuts in various ways, and as you can see from the views expressed, you are not the only one who sometimes feels that way, about deviating from the central purpose. Others have been upset by politics. I got into trouble for a quip about President Trump and have not mentioned him since because it hurt someone’s feelings. Good reminder!
I completely understand where you're coming from as when I've been in a bad place, I have taken the odd comment to heart and over reacted but my style of over reacting is to withdraw silently so I managed to get away with it without anyone else knowing. Having said that, I thoroughly enjoyed reading the debate and possible solutions (if one is needed) so thanks for stimulating it albeit unintentionally 🤣 Absolute praise to b.e. for maintaining an open and interesting debate, I was at the back of the line when tact was given out so loved the gentle prodding to consider other opinions, awesome job. I agree with you that this site is fab so please don't change anything peeps xxx
Thanks for that Angie. People on here are so lovely!
Hi Christine
Don’t worry about it, you’re just as entitled to state how you feel as the rest of us. I too muttered expletives 🤬 & closed the App so you’re not alone.
Personally, l’d prefer PMR/GCA/Medical related topics PLUS something to make you/others smile or realise there is a way through this & that you can come out the other side.
Politics & World Affairs you can get on the TV & that you can switch off!
So more to the point - how are you feeling & what did your Rheumatologist say/advise & when do go back to see him/her? Hope the Pred is doing it’s thing & you are improving?
My GP suspected PMR in early December. I'd never heard of it. He had been treating me with strong pain killers and anti-inflamatories for a month with no effect on the pain. Despite the bloods not being conclusive, he decided to try me on 20 mg Pred. All pain disappeared within days. He tapered me down to 15mg and then 12.5.
At 12.5, I got back the unilateral (excruciating) pain which I'd had with the bilateral PMR pain. Up went the pred dose to 20mg, which didn't touch the unilateral pain.
The rheumatologist was very good.
She had no doubt that I had PMR but said the unilateral pain was Sciatica, caused by damage to my lumbar spine when I was caring for my husband with Motor Neurone Disease.
She gave me an injection for the Sciatica and wants me to taper back ASAP to the lower dose of pred to manage the PMR. I'm on 15mg this week, 10 for the following 4 weeks then 7.5mg until I see her again in six weeks.
No, it’s always good to get your story out as someone may have some input to help. Hope the injection helps the sciatica, l had one in my shoulder & it was a ‘miracle cure’
Rheumatologist’s always have a Plan on reducing Pred & in theory it sounds great but in practice it’s an other matter. See how you do as you reduce but take it steady & keep in touch with the Forum & your GP
Welcome to Our Forum, you’ll soon settle in & any questions don’t hesitate to ask but always start with a new thread as then it’s easier to pick up.
Be VERY CAREFUL of a taper from 10 to 7.5. I wouldn't have done well with that, and I don't know that anyone would. The best practice is never to taper by more than 10% at a time, and at 10 mg that's only 1 mg. And you should stay at each new level for several weeks. At 10 mg you are already at a level where side effects are diminishing so there shouldn't be any hurry.
True - but not discuss it and the same applies as the support for medical questions: some people are isolated and don't have the luxury of someone to bounce their problem off and let off steam.
I agree PMRpro, but it works the other way too. I live alone and had no one to bounce my distress off on Wednesday, which is probably why I overreacted, for which I'm sorry.
I live alone as well, normally I can get out and witter with friends about the state of the world, but bit handicapped at present, so know where you are coming from.🌷
Exactly - you were perfectly at liberty to say so here and most of us wouldn't have turned a hair and many of us would have sympathised.
You can't imagine how often I look at a post/comment and sigh loudly or swear roundly - for all sorts of reasons which I won't go into here because someone would assume I meant them when I don't, apart from anything else this is only one of several medical forums I haunt. It is not reasonable to take everything personally so it is perhaps helpful to regard anything you dislike or struggle with the same as you would if you heard from the person sitting behind you on the bus. You wouldn't get off the bus (in most cases at least) nor would you turn round and shout at them either.
I know people on the forums who sometimes DO reply very strongly - may or may not post it but immediately delete it. It's gone but they feel a relief. I've done it myself.
This is where we discuss our PMR/GCA issues, we’re here to help where we can & ask when we need advice. I personally don’t want Politics here, that’s just my opinion.
The I don't want chat on politics etc. when I feel poop enough as it is.
And, the I feel poop because I have noone to talk about this and get how it could affect me as a PMR/ GCA sufferer .
Maybe we can have the big debates and choose to read or avoid them just like more social posts .
But limit those political and big issue debates to chat relating how it affects us all with PMR/ GCA at home , and for some campaigners for awareness , of how big changes in the world affect ignored health groups in terms of our rights as sufferers .
Many would find that helpful I think , and just as many would want to avoid it as well. But I'm was good that Oxford made the point of how she felt , it helped us all chat it out .
I enjoy many discussions on the forum and often they go off in another direction without much help but I decide what I join in with. For me the politics talk was something I just wasn't interested in. That was my decision but it didn't stop lots of you having a good debate over the subject nor did it stop any one from asking for medical advice outside of the politics conversation. That's the beauty of this forum. We all get to use it the way that suits us best.xx
Totally true and that's why it is a vital partof this forum that people are allowed to discuss what they want as long as it isn't deliberately insulting aggressive etc. All adults on this site have the ability to stay out of every and any discussion if they don't like the subject but no one except the adjudicator have the right to say what we can or can not talk about. YB
Christine, I can imagine your reaction after just having been diagnosed with PMR to the rather 'robust' thread that you landed on while you were seeking answers (but not to that particular vexing question!) Nothing to apologise for, and welcome to the Forum where we all sometimes let our hair down if we haven't already lost it to pred...
As new members join and add their distinctive voices to the mix the posts change in character and personally I don't think we require any more rules to abide by if we are civil, respectful and can summon up some humour to help us all with an holisitic approach to our PMR dilemmas - like Jane, I've been on the forum for over 3 years with an almost daily check-in, sometimes I need fun, sometimes advice, occasionally I feel able to add some relevant information, it's pick and mix, depending on one's mood. I hope you'll really enjoy the community in all its diversity, and add your own voice to it
Oxford8, NO WORRIES! That is what makes this site so amazing, we are all totally unique individuals; "warts and all." If we all thought the same it would be a very BORING, ineffective forum! Never apologise for expressing your true feelings, even if they were shared in a moment of emotion. ❤️
Oh Oxford dear. Don't be so hard on yourself. Crikey I am a nightmare , saying things and only afterwards when it's too late realising it could be taken a different and ghastly way.
So very glad you arent leaving! We need you and you need us. You've been through a difficult and painful time. Plus pred makes us act a bit up and down. Lovely to see you. Take care. Love, Linda xxxx
Thanks Linda. I love your posts. You manage to smile through some very grim moments. I'm not going anywhere... I've learned more from this group than from any medics and in a warm and friendly way.
When we aren’t feeling our best we sometimes react in a way we wouldn’t normally - it’s happened to us all.
I remember early days on Pred I had a right moan at a cafe assistant because the service was slow! After I’d had my coffee I realised I was out of order and apologised!
I have so many count to ten before reacting moments these days I have started to learn to do it in foreign languages , and sometimes, even that doesn't help!!😂😂😂
Please don’t be sorry and I’m so glad to read you are staying with the site. When times get bad, which they inevitably do with PMR, this site is invaluable as a source of much needed help and support. When times are good it is also a wonderful place to share our thoughts and have some lighter conversations. What I have learnt on my 1 year journey and from being on this forum, is that PMR doesn’t care who you are, what you are, where you’ve come from or what you believe in. It’s natural then that we all have different views on the world we inhabit. We all get down, we all get grumpy at times and pred sure doesn’t help our tolerance levels 😱 !! So hang on in there and I wish you well on your PMR journey. I am sending you a virtual hug. Xx
Thanks for this, but don't worry - I'm sure a few of Us Lot are guilty of letting-off steam and being a bit impulsive in our replies here sometimes. And, of course, if it's a contentious topic AND we're not feeling well / stressed it's no surprise that tempers can get a bit frayed?! Grrrrr!!
It's very kind and courageous of you to write this post. More important, you now seem to have a reliable (if unwelcome) Dx of PMR and can move forwards with a little less uncertainty (e.g. the possibility even more serious health conditions).
I agree with you that this marvellous Site has something for everyone: from serious, urgent advice and emotional support to light-hearted social banter and links to various resources via PMRGCAuk. As many others have said, we all can dip-in and choose / follow whatever suits us at any time.
Best wishes on your PMR Journey, and try to keep smiling during the tough bits - it won't fix PMR but (in my opinion) it can help in the coping process
The one thing I haven't done since this PMR diagnosis is cry, but the warmth of the responses this morning have certainly altered that.
Earlier today, before I posted, I was laughing out loud at some of your posts.
Daisychain responded to my post in a wonderful way - and then I read her posts of her current fear. Where did she find the goodness to reassure me when she was going through so much herself?
No worry Christine, all part of the service and I agree with you about this Community.
All I would say is: sadly, if you find yourself laughing at my silly ramblings you are also probably well-down the road to having SBS (Slightly Bonkers Syndrome) - a distressing and rare affliction shared by a few others amongst You Lot here. But don't blame me - I'll deny all responsibility (as usual)...
She is lovely and giving when she can , a great support and friend.
But even she will admit , on times you are feeling vulnerable or down, its best to steer clear of more serious posts or Dr Google and just read something uplifting or supportive instead , just in case what you read makes you feel worse .
It's a trap we have all fallen in , and one we all try and advise others to avoid to help reduce the stress or anxiety of the early days.
No apology needed at all. But there are many aspects to living with chronic illness and being able to discuss them with others who are in the same boat and may be able to empathise. Those who don't want to look at a particular outlook can ignore it - we even have sections for the family/pet/holiday photos. Not everyone goes nuts over a puppy or baby thread - but I haven't actually seen any of those people objecting here, they just look the other way,
Well, good for you and good for us. Yeah, sometimes what people say is upsetting. Sometimes, the way they say it is upsetting (that's usually me, New Yorker that I am.)
But it's healthy for a community to have a good thrash about every once in a while. Keeps things fresh, you know? As long as it doesn't descend into childishness, but remains an exchange of ideas, I'm OK with it.
We here are a full range of folks, chock full of knowledge and experience and hopes and fears. We're friends, and while friends might check out of a few conversations they just don't want to deal with, they don't abandon their friends.
And since we are friends, more than one of us has "lost it" over some perceived or imagined slight, or over some turn in conversation they didn't like. So what. We all get over it and come back to the friendship, as adults should.
There's more gold on the pages than less wonderful stuff.
But you gotta sift, and take some of the other to get the gold.
So, no worries, Oxford. All is well in PMR/GCA land. And we're glad you're here with us, slogging on through.
Much calmer Thanks MhairiP, largely down to this group. In the light of some of the comments I've persuaded my Consultant to taper my prednisolone drop much more slowly, so thanks all of you.🌹
My doctor told me that I would have a lot to say about the taper. She believes in symptoms being king, not blood tests. So I would like to gently suggest it's not the consultant who is in charge of your taper. Unfortunately, it's the PMR and only you know how you feel. But it does sound like you have a reasonable one who will listen to you.
PMR pro was right when she said that being on your own means there is nobody there to talk to when there are stressful situations ,please do not worry about finding our recent posts unusual on a health forum,we do not usually discuss anything political on here ,it was just such an important topic at the time. I am sure that everyone is much calmer now,and l found it very helpful at the time,after feeling very stressed all day.l hope that you will manage to taper the pred without any more flare ups,it does need to be done carefully ,a little at a time.Thisis a very friendly forum and we look forward to hearing from you to let us know how you are .Take care and l wish you a nice weekend xx.
So pleased you are now a ‘believer’ in our wonderful forum.
Of course we do go off-piste regularly, but it’s just good to know we are all human, with the same sort of illnesses, the same need of ‘understanding’ our disabilities/fears etc. And we are often cheered up by “silly” posts.
Serious posts also keep us sane - we receive better health information on here than I have ever got from a rheumatologist.
Great photo you posted this morning. Thank you! 💐💐
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Starting trial of prednisone I'm so sick
Tapering again, sorry I'm new to this
So many new an interesting words I'm learning
I'm so disappointed
Shingrix yet again. Sorry
