Good morning, thank you to all who have helped with wise and positive words recently. You know who you are. I realise that I had got myself into a negative mindset that has been replaying on a loop.
I have had PMR for 8 months, 'only' 8 months, and have reduced prednisolone from 15mg to 7 mg because I felt it was expected of me by the GP who initially diagnosed me. I realise I have not fully accepted the reality of PMR even though it stares me in the face every day, I have been seeing it as something I can control and overcome which was how I was brought up. My mother would be annoyed if I was unwell and I felt I had displeased her in some way and had to atone for it. That mindset has been very strong. I realise PMR is no one's 'fault' and I need to accept it as a constant companion for however long it takes, as well as its partner in crime prednisolone. There is no magic cure or quick solution and there is nothing I can do to hurry it along. I have been in denial of the reality of the situation, resented it and tried to control and overcome it.
I apologise if I have not listened at times to those of you who have tried to offer advice and support. I realise I am not going to find a magic cure or a way out as there isn't one until the process is good and ready. I am ready to listen and learn and thank you all for bearing with me so far. GG xx
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Groggrim
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I've been reading your posts with interest and think you've coped very well. Like you I've only had it for 8 months and am on 7mg but hate how I feel. It exacerbated my AF so now on more medication and probably heading for an ablation.
Pain is bearable but the exhaustion is hard to cope with.
PMR is life changing, lie back, relax and smell the roses. You may find that some things are now more difficult but there are new things you can try that you do not yet know about. The mantra is rest, rest, rest. Just take it easy and enjoy life.
Well done, Groggrim, acceptance is such a hard lesson to learn. I'm with you on needing to be in control. I'm in NZ visiting family and frustrated that I don't have the oomph do much and have to rely on being taken everywhere. Used to take pride in being a fit and independent woman but she seems to have disappeared. Thanks for your insight into the roots of your mindset, it is helpful.
I think there is a degree of bereavement here. Grief for the loss of health and strength, also a certain amount of independence. Loss of security in the future. Loss of who we were, who we hoped to be and who we have become. Bereavement is not just about death but about loss and coming to terms with a new reality.
This is true and we all miss our former, more fit and able bodies. However, I counter those feelings by reminding myself and being grateful for the fact that PMR is not terminal and can be managed, unlike ALS and other things that friends are dealing with.
Yes, and getting old(er) is in itself a kind of loss of the adult we were, and so compounds the feelings of bereavement. I've often felt that loss and change were opposite sides of the same coin. But change brings opportunities so I guess it is our task to adapt and rebuild positively. For ourselves and not for the archaic rule makers we seem to hold within!
Good evening, been chilly and miserable here today. Such a change in the weather. Like many, probably most us here you have developed a disease/ailment that you had probably never heard of. To go with that you then, eventually find out that there is no cure, only a little white, in my case, tablet that only controls the symptoms and has the ability to do all sorts of other unfriendly things to you, until the inflammation decides, when it's ready, to go away. Might be two years, more likely to be five or six or more.
The hardest part then becomes the acceptance of what you are suffering from and how the medication works. No, take the pills for two weeks and all is back to normal. Even worse, you eventually find out that if you try to rush things you end up having to up the medication and possibly get back to where you started from.
You then have to, also, accept that many of the things you did before you can't/mustn't continue with because you are too fatigued.
It is a very big ask of a generation that is/was used to"pushing through" these sorts of problems and not giving in to the bits of pain, discomfort, days off etc.
It's not surprising that it's not easy for us to completely accept the reality of where we are.
You have now got to that point and can spend more time relaxing, working out what you can/can't do today or tomorrow, remembering that you can say No when asked if you can do or go somewhere.
There is no need to apologise for anything that you have done, not done, not listened to, or anything else. Nothing will affect how the people here will continue to try and help everyone who post here with a problem as well as rejoice with a success story.
It's also worth remembering that there are an awful lot of people out there who suffer from far worse things than we do. As Piglette says "relax and enjoy life". Sadly tomorrow's weather forecast is for rain all day so sitting in the garden soaking up the sunshine is also a no no😢
Thank you Bcol. I was familiar with PMR as my aunt suffered with it. There is a lot of autoimmune illness in my family history going back at least 5 generations on my mother's side. I have 2, Mum had 3, her sister had 2, her father had 2, her grandmother had 2. We blame my great grandparents who were first cousins. They had two sons and the AI gene was clearly passed on from their union. I'm ok on the whole, an occasional pity party when I can't take part in an important family event, but I've stopped acting like a sulky child and and am working on getting it in perspective.
What a really lovely post full of incontrovertible wisdom. A fellow GCA club member said to me within my first 18 months or so, not unkindly, “ you really haven’t a clue, have you?” … and she was right. I hadn’t. As discussed, I thought it would run its course by 2 years. Now, at nearly 5 years and with newly suspected PMR as well, I’m still raising my eyebrows in disbelief, continuing to experience body crumbling from Pred, but… yes, we go on, as the poet said. The rain means I don’t have to water the pots… xx
Does it help to bear in mind that the PMR is part of GCA for quite a high proportion of patients? Just you start on such a high pred dose that the PMR doesn't get a look in - until you get to a much lower dose and then it comes out to play too.
Probably. It is difficult to give numbers - you don't know if the PMR is a symptom of GCA until it happens - do you see what I mean? Some people definitely have PMR as a symptom of developing GCA right at the start, whereas others have PMR years before something makes it turn into GCA
Yes I do see what you mean… …last week I did ask my Rheumy, who in 2020 said the GCA would last approx 2 years, what proportion of her patients didn’t get over it in the approved time frame … she said I was in a small minority and “ very unlucky “. So there we are!
What rubbish - GCA is probably more likely to last 2 years than PMR but many of the GCA members here have had it far longer than 2 years. And if you read this month's Newswire Sarah Mackie talks about how actually it NEVER really "goes away". The propensity for the immune system to go haywire remains for life, waiting for another trigger to set it off again.
You see, i absolutely believe you, but it concerns me that a leading rheumatologist at a big London hospital ( mine ) is saying this? It’s obviously her particular West London experience, but you’d think she’d reference the wider picture…
Be interesting to know how many patients she has actually cared for - GCA is a rare condition, so she is unlikely to have seen that many in her career, especially if her personal interest is in inflammatory arthritis or lupus for example. And does she follow ALL her patients until a year after stopping pred? It may be the case for patients with pure cranial GCA that most are off pred in that time scale. PMR really mixes things up - but it is still the same disease underneath it all (also see Newswire),
Morning G,why apologise,we all have our foibles and problems,part of the reason to come onto forum and air them.and if people don’t like it,don’t answer,everybody needs a caring listening ear sometimes.Whenever I get in a tailspin and feel sorry for myself,I try and think of people in a far worse situation than myself and that brings me back to earth with a jolt.Whatever we are going through on here,we will get through to the other side,and even if some of us take a lot longer than others,we will hopefully be in a better frame of mind to deal with it.Try and take some time out from thinking about this damn disease,and focus on things that are far more worthy of your thoughts and time.You’ll get there as we all will.x😜💐
Why apologise? It's a learned habit from when I was young, deeply engrained and, I believe, stems from my searching for affirmation. Thanks for calling me on it as I am trying to find a better path, even at my advanced age 😉
Please realise this is a very normal reaction to your situation. Most of us have dealt and still continue to deal with the same feelings. I’ve had this condition for nearly 8 yrs and I still try and fight it and feel the loss of my former self on an almost daily basis. Acceptance is hard and to me feels like giving in. Try to be kind to yourself and turn to the lovely folks on this site whenever needed.
Thank you, you too. You are right and I realise I need to calm down for everyone's sake. I have been struggling for some time with learned behaviours that surfaced after some CBT counselling a while ago. I am grateful that there are forum members who are not afraid to call me on things and I thank them for their patience. I think that PMR might have happened for a reason 🙂
Hi Heron,is “ Raster “time an African holiday this time of year?Only joking ,I know you meant Easter really,just my warped sense of humour.Hope you have a lovely EASTER too,xxxx🤣💐💐😜
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