hi all,
Pmr from may 2017, now 72 yrs old. And a variety of other “ health stuff”.
like many of us I too have landed in the rollercoaster of PMR.: sometimes it is OK/ and manageable, sometimes I feel anxious and “ upset” and worry about the whole thing!
this aspect: “ how we relate to our illness/ what we do with it” we CAN change, and that aspect gives us some power. The stuff “between our ears” and in our hears and minds.
Anybody wants to comment about this??
I believe that knowledge is power. Learn all you can about your condition by reading material from a reliable source and from others’ experiences. Try to stay positive ( can often be difficult) and surround yourself with people who, although they may not totally understand, are supportive. Don’t suffer in silence. Be your own advocate: your body, your health.🙂
I believe acceptance is key - as it is for all chronic illness. Sounds a bit saintly perhaps but once you accept this is how it is, it makes it a lot easier to adjust to the changes that are needed.
Great to see so many of us recognising ourselves in all this. ( all the hearts). I love it!
It is a shame though that most of our doctors (?) don t inform us what sort of an illness/ condition we are dealing with.
18 months to 2 years…yeah right ( for most of us!)
I don't think a lot of them realise. Though I don't think anyone told me a timescale - right or wrong.
I haven’t commented before because I don’t/didnt have PMR.
I had GCA -and the ophthalmologist consultant who treated me initially had a better understanding than many rheumatologists seem to -and certainly most GPs (understandably). But then he was aware the devastation GCA can cause with potential sight loss (actual in my case).
He fully explained what had happened, and the outcome and his words to me regarding treatment were -
“You’ll be on Pred (and high doses initially) for at least 2. years, although probably nearer 4 and maybe for life.”
He was spot on -just over 4years -although it may have been less than that if I hadn’t lost my hubby during it when I barely reduced dose for around 10-12 months.
I’ve always said, once diagnosed I think GCA is easier to manage -and although it wasn’t easy at the beginning, I did accept my situation - and got on with life.
But so many are left with not enough information initially so struggle.
I think we all think you ARE a saint on this forum at least Pro!
Hmmm, maybe, maybe not 
Will need to watch that halo doesn't slip and hang me ...
hi, I think it’s a shock when you get diagnosed and it takes time to understand and adapt. I was diagnosed in May and clearly my head has not accepted the long term nature of the condition. After weeks of feeling rubbish, last Friday I felt heaps better and so decided to go for a walk. 6 miles. I don’t need to describe how I have felt since but pretty stupid is one expression. I guess it’s like when someone feels better and stops taking the medication…..we want to be “normal “ again. Forums like this are invaluable in helping us to change, there is no “ ought to, should do” only can I and is it wise to. Pacing and accepting significant limitations are very difficult but essential lessons to learn in order stay on some sort of even keel.
Hi Kaaswinkel, I am a similar age (74) and have also had PMR since 2017. You are SO right, it is about keeping a positive attitude. This forum helps enormously just connecting with others in the same boat and sharing experiences is very therapeutic. No one who hasn't got PMR really understand because we all look well. The rosy cheeks and weight gain generates "You look so well" comments all the time.
I think it's a good plan to have some strategies for your not so good days like treating yourself to something therapeutic like gentle gardening or going to see a film. Above all steer clear of negative people. I seem to attract them probably because I am a VERY positive person. But, I now realise I am not interested in this energy exchange!!! Now, I've got to a place where I can tell them that I'm not in a good place myself and to take their misery elsewhere!! All the very best to you.
Hi Louisa that’s a great plan. I’ve had comments from good friends that have made me feel I don’t even want to bother to mention pmr as it’s dismissed as ‘ you look well anyway’ and ‘my mum takes lots of tablets too.’ Just had a really bad Dexa scan result which I felt must be for someone else but says I’m at high risk of breaking a hip (Alenronic acid to be started after I held off). Will be keeping issues to myself and hoping to reduce steroids in timely manner whatever that might be. As a previously fit, 70 year old who is the one who helps other family members with babies, young children, and general care for aged aunt and brother it’s mighty inconvenient to say the least. I’ll practice your sentiments to others. Keep the negativity away - we have enough to deal with.
Oh, Polly I know all about those friends who can't believe there's anything wrong with you! I know it's daunting having to have to have another drug. I believe your Alendronic acid will be given as infusions? I had those for 5 years which, for some reason is all they will do but now I am on six monthly Prolia injections. They have been fine with no side effects. It's actually a relief to know I am, somewhat, safe guarded against potential fractures. My doctor said she has seen too many unnecessary fractures......
Feel free to air your issues on here and have a good moan. It does you good and it's what we're all here for! What's more WE understand whereas those well meaning friends simply don't.......
Louisa is nt amazing how long it takes us to tell negative etc people to “ go somewhere else”. That we first have to get “ not in a good place” before we speak up!
i also like your “ strategies” advise.
You say it so nicely.
Yes, how very true! I know that for me, I loathe confrontation. I like to "people please". These habits are very entrenched...
we are all told by our parents and others to "fit in". No one likes to be seen as unsociable so we all try to say what is required and not stir trouble or dissent. As we get older and more aware we realise that we are individuals with our own needs. We start to learn that pleasing others doesn't necessarily help or improve our selves. If we can help others by sharing knowledge or speak kindly then that is a good thing. My great uncle once told me that to care for someone was good , but to care for ones self was more important. Life requires one to be sufficiently selfish.
So true. You can't love others without first having a healthy love of self.
"Once you accept what you cannot change and change what you can then things are easier to live with". Not my quote but a quote from HH Dalai Lama. Totally true though. Acceptance and mental attitude makes all the difference. I fought against my own body for a long time. Now I accept it and all it's peculiarities. Makes me a happier more contented person. Still get grumpy when I am in pain though but that's only until I realise I am lucky to have modern painkillers and so what if I can't do housework 😂
The only thing wrong with that easy wisdom is that you don't really know what is possible until you try. Admittedly one should give up trying something if it becomes obvious that one can't succeed but at least give it a go first. One never truly knows what is not achievable until one tries and sometimes we even surprise ourselves. The Dalai Lama's philosophy leads people to give up before even trying. If you reach for the stars you may not succeed but you may get to the moon.
There are so many health risks from being on Pred that I hesitate to mention the plus sides. But for me there have been some.
It has given me some lurid but memorable (and so treasured) drugged-up experiences such as wandering around Stratford East London in January as the light faded looking for a medical facility, haunted by a feature of Christmas lights strung across the road where one light was a different colour from all the rest but only came on about every 4 minutes. Mesmerising!
More positively it has given me the energy to overcome dither and make a few decisions. eg: one day I felt I could throw out all my old diaries (boring daily log of my activities and feelings) which had become a burden to me. I just took them all out to the bin. End of.
As others have mentioned I also feel able to say to people who drain me that 'I have to go' and not feel guilty.
I find that stretch exercises make me feel better and have found the courage to go and do stretches in the local outdoor gym (mostly bars) which is a lovely urban space with trees, frequented by young men who thankfully ignore me.
The cinema and eccentric cooking adventures also figure in my PMR/Pred distraction techniques. Latest interest, gram flour (chickpea flour used in onion bhajis). I am enjoying looking after myself.
Only risk, that I don't take enough care of others who actually need me to take their situation seriously. And of course there are days when all I can do is absolutely nothing. And days when I want to cry - much less frequent now on 5mg Pred. And I am fatter than I want to be!
A great post - thank you! It's hard when the draining people visit you then you have to invent an excuse to go out! I'm with you on being MUCH fatter than I want to be. Yesterday, I had to wear a costume for a play we were presenting to a local history group. I hadn't worn it for over 4 years - AARGH! Talk about bursting buttons and seams.......
Not sure about throwing out the old diaries? I still have mine from over 40 years ago in the days I kept a daily one - fascinating reading to me...........
almost a weed....haha, a great name. A weed is only a good plant in the wrong place. Many years ago I decided that I was never in the wrong place but maybe the plants around me were the wrong sort.
As for diaries.......I always live in the present. What is past helped form the me that I am now. If we spend time considering the past we don't spend it constructively thinking how we may benefit from the present. That is to the detriment of our future selves.
Yes, cycli, that was my thinking about my diaries. I wanted to give the present my best shot. Thanks for your positive response to my name!
always welcome. If you can't say something positive, be silent. I wish I had learnt that when younger. Would have made my journey easier. 😀
I am certain that we must all go through a grieving process when diagnosed with a chronic illness and like all grieving, it takes as long as it takes. I went through the whole process. The denial, this wasn't going to beat me, trying to live my life regardless and failing miserably, the frantic researching for a way to get well again and finding none. Then the anger at the active part of my retirement being stolen from me, all my plans and hopes dashed, anger at having done the best I could to look after my health by being fit and strong all my life, so unfair, and the anger with myself at allowing all that work stress and life traumas for too many years to bring me to this. It took me well over a year from diagnosis to reach a point of acceptance, where I was able to think, OK, I am effectively disabled, I'm not going to get well in any kind of timescale that is going to allow me to do what I wanted to be doing. I think my final epiphany was when I realised that I am lucky, I still have a good life, I am not going to starve or freeze to death, and I am still able to do the things I love, I just have to find a way to do it in the small chunks that I can manage.
Though being fair on myself, I did stop work due to what I thought was mental health issues at the time, but in retrospect, was really due to an underlying undiagnosed physical health condition that was making even the most mundane things in life much more difficult than they would otherwise have been. I was just exhausted. No surprise that I couldn't cope with life, even on a day to day level. I reached burn out, in the end, and I think I got out of the workplace within an inch of a complete break down. So, aswell as managing my illness, I also had a long road to recovery ahead and it took me the usual 2-3 years that is normally suggested for a recovery from a burn out.
All that sounds like a bit of a sob story, but that's not what I intended. I have illustrated a process and I am sharing it, because I know that if I had read something like that at the beginning, I would have known that everything I was going through was perfectly normal. Someone mentioned negativity and one of the things that I did do was eliminate a lot of the negative influences from my life when I stopped work. But the things that have helped me is learning to pace myself and to take enough rest, being thankful that I never have to go back into a back stabbing work place again, doing what makes me happy, and enjoying the moment, accepting my physical limitations and finding ways to find joy in spite of that. And being able to forgive myself for allowing my body let me down.
Throughout, the most damaging thing that has been said to me is to think positive, when all I needed was just a little compassion. It is so invalidating to say that to someone who has a life changing illness and is finding it difficult to navigate their way through it. It's almost like they are denying the existence of your illness, though it is a common experience for people with invisible disabilities. It is perfectly OK to feel disappointment at loss and what is effectively a bereavement.
You summarise it so very well: it is a bereavement. We have to face that and accept that.
Unbelievable that all these pearls of wisdom you women dropped around , in some form or shape, are not part of “standard pmr care” like Prednison has been and is.
It would have saved us a lot of stress. If we would have understood all that.Many doctors still think they are expected to cure, while many of us would accept the thruth: “ how to manage” .
Success for all,
What a self-perceptive post Gimme! Thank you! In no way should you be angry at yourself for "allowing the trauma and work stress to bring you to this" That's the wisdom of hindsight. I didn't lead a stressful life at all but I still got PMR (and so did my brother which would suggest a strong genetic link?) The comment I most related to was how unfair it is that you and I have tried all our lives to exercise healthy options . I should be swinging from every available chandelier and beating my chest like Tarzan! But, life isn't fair is it?
Go well.......
Gimme...This is a perfect mirror to my experience. Thank you and well expressed. PMR pro was the first one to inform me that I was grieving for my lost life. It hit me like a rock thrown. The man I now am is so different to the athletic person I was. I spent the last three days picking soft fruit instead of cycling hundreds of miles. Now I have to top and tail them !!!! Life goes on but differently.
Sorry, should clarify, I am not saying gram flour is an eccentric ingredient, it is very commonly used. But it is new to me and my experiments with it are eccentric.
Lovely stuff - beats wheat any day!!!
I love eccentricity. Such FUN!!!
5 years in and I feel...totally robbed of my life...I can't walk more than about 100 yards...I get weaker not stronger (exercise is definitely a no no...moving is fine...I still clean my flat, cook etc...but suffer complete exhaustion.) fight exhaustion so that I can produce work on time. I don't have the energy for anger...just feel life has emptied out for me...almost completely....sorry not to be giving out positive vibes...great for those who can...
Many of us understand , in our own way what you are suffering, the battles you/ (and we ) have to fight. That is absolutely not what we expected and yes it stinks!
Thanks for sharing your story, great all the contributions.
Having to do paid work with this condition sounds really hard. It means you are having to fight how you feel instead of going with it.
such a kind and thoughtful response.
I listened to Kirsty Young on BBC radio yesterday and how she overame fibromyalgia by giving up work and focusing on recovery to health...she admitted that she was very privileged to do that...and indeed she was. My heart goes out to all the people on this forum who have to continue working...it is a financial imperative...there is no choice for many of us.
Yes I heard that news about Kirsty Young, very interesting. I must listen to a bit more to find out how she is managing her life now.
I realise this morning that what I said about work in my post to you might make some people want to give up work and that might not be the best thing for them. I think having structure and purpose is a very important plank of wellbeing.
I am lucky enough to have a small but interesting desk-based voluntary job which I can do in my own time. I also have some low energy community involvement at my church. Without those two bits of 'work' I might feel more lost than I still sometimes do.
This is link to podcast -only available for 2 more days
I’ve just listened to it this morning (13 Aug)
Super. Dank.
Not sure if you can get it as it’s via BBC but maybe as it’s a podcast.
Quite interesting- and some good points about coping with chronic pain whatever the cause.
It always surprises me what I can get from the BBC! Can't say this week - in Scotland ...
Thank you DorsetLady. I have just listened to this in-depth conversation with Kirsty Young about chronic pain. All of it very interesting. Most interesting to me is how close the sleep centre of the brain is to the pain centre. I am also interested in her thoughts on acceptance and acceptance practices such as Yoga.
I think the beauty of this forum is that we CAN have a good moan. It's totally unrealistic to to pretend to be positive all the time..... Poor you having to work whilst coping with this condition, I can't imagine how you cope with that - well done for being an overcomer!
you are right...this forum is the only place where we can be honest about our experience...and thank you for your positive words...they are appreciated.
Hugs 💐
I'm 72 as well and landed with PMR & Pred Dec 2023. The idea I was given was within 2 years I would probably be PMR free. Well 9 months in and the original taper schedule I was given has at least 9 months delay. You see where this is heading - to the 5 to 6 years Pred free if you're lucky.
I have decided to cautiously reduce Pred subject to a level of aggravation that lets me get on with my life doing the things I want to do in the most normal way I can. There will be issues as PMR has already shown me but I'm optimistic and will cross each bridge as I reach it but absolutely not look for them. Reading this forum shows you where things could go be aware but you don't have to go there.
Do you know I think it might be helpful if we didn't put any time expectation on where PMR might lead us or when we might be pred-free? Some lucky people it seems are free of it within 2 years but an awful lot are not ,myself included. It's been over 7 years for me and I know people like PMRPro has had hers for 20 years. We probably don't want to hear those stories! To use an expression of which I am not overly fond"It is is what it is". I think your current attitude of acceptance is a good one - well done.
Oh Louisa, more than two years! I'm not sure if I'm up for that. I was thinking this was, for my exceptional self(!) a short excursion into a minor disability. A ride, a story.
But on reflection I have been low energy all my life and having PMR is an extension of that. I am really interested that many of us seem to have over-exercised. I wonder if we have all been trying to up our performance with all that walking, and our true sluggish natures have caught up with us.
If you go about it right, it IS a minor disability. It stopped me doing some things sooner than I wanted to but on the whole it hasn't been too bad. I have still travelled the world.
Thanks PMR Pro. Minor disability - I'll take it! Problem with travel for me is beds. I fear that the wrong bed will give me a flare and am dreading a trip to Devon in the autumn for this reason. Actually, I may be on too low a dose of Pred, currently tapering to 4.5. Might have to stay on 5 or even 6 for many months for quality of life.
Might have to stay on 5 or even 6 for many months for quality of life.
That sounds like a very good idea. QOL is paramount…
Thanks so much for this affirmation of what I have been thinking. I am just on the edge of feeling quite manky.
Feeling manky is never good... haven't heard that expression for along time, but know exactly what you mean! So do what you know will help.
That is NOT the idea!!!!
A change in bed won't cause a flare, too low a dose will. The bed might wake up one of the add-ons which needs some attention. We had camped for many years - caravan and later mobile home, MY bed! But hotel beds for international meeting were rarely problem. Neither is the bed in my new VW camper ...
And if it eases your mind - my current change of beds has resulted in reduced low back pain! It might be coincidence but after a night on my daughter's bed it was much improved and has remained improved when changing to the other daughter's spare bed!
Hi PMR Pro, I accept that being on too a low a dose of Pred is my main problem right now and I can up the dose and all may be well. But strangely enough I think for ME beds ARE implicated in my PMR. I think it was sleeping on an inadequate bed for a year that precipitated my PMR in the first place. I may do a separate post about this sometime as I am curious to know if anyone else has a similar (wrong bed) history to their PMR, or GCA. But I will wait until after the holiday as it may shed more light on the issue.
Bad beds are a mechanical problem - PMR is an immune system disorder. I'm not saying a dodgy bed won't make your symptoms worse - I'm suggesting your symptoms may not be entirely directly due to PMR, Mine aren't but are definitely made worse in some ways by PMR.
Yes, very clear thinking there. I might need to think about this a bit more! And take more Pred. Thank you for your support through my responses to Kaaswinkel's post.
What I do - stick my nose anywhere that seems it might need it ...
Yes I get that! You keep us focussed on the realities of PMR.
Keep it up Pro we all appreciate your "sticky beaking" as we say in Oz. Do you have that expression on UK, I don't recall it?
Not that I know of - but there are a lot of new expressions that have been introduced to day to day conversation since I came to live in Italy!!!! Nosey-parker was the term in my day I suppose!
Hi Kaaswinkel, see how you have brought us out of the woodwork with your thought provoking post! I think I might have to scramble back into it now.
I just “ scrambled back” through the posts! Fabulous! What energy!
All the various post certainly got my brain stimulated.
I decided to extend my activity level a touch and joined a women s gym here around the corner. One can “work” as slow and gentle as one wants.
And yes, I will.
For me it is time to “expose myself to the world “ gently dragging me out of the “ careful careful sick role” that I have been in now for a while. ( i had breast ca.too, but all in the past!I am more than PMR. And ex breast cancer.
Iwill be careful careful, we will see: live or die!?
we will see! Success for us all.
Hi Kaaswinkel, I think you raise an interesting point. There is a risk we can get stuck in invalidism more that we need to. Good luck with your venture into the world. Take it gently. Be outrageously unimpressive! I sometimes sit on a bench in the outdoor gym just flexing my ankles, while the young men do difficult body holds on the bars. But there is mutual respect that we are all working on our fitness.
Love it!!! Great ankle movement girl😉
Why we need to share experiences with PMR/GCA
Campaign to raise awareness of PMR - We need your help!
PMR/GCA – Personality Types, the Journey of Change, and Coping StrategiesWhat to do when PMR/GCA means we can no longer continue to work in our usual role? Please can you help create a reference point.
Newfound respect for PMR and the people who deal with it.
