I have been an avid photographer and loved spending hours on my computer working in Photoshop for post processing my images. I have found in the last couple of months that I have lost interest and have no patience to sit and do what I love.
I have tried making beads which I used to enjoy and ran out of interest whilst doing that, I seem to have lost my interest in all things.
I also have become more intolerant, from a very placid easy going person, I get quite irritated and again, for me, no patience. It may just be getting older but it has coincided with having this complaint. I don't like it but it is happening and I am working as hard as I can against it.
Have you guys experienced any of this.
Many Thanks
Riversnan
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Riversnan
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Yes! Think it could be a lack of concentration as much as lack of enthusiasm!
I know we blame the Pred for virtually everything, but it does have a lot to answer for. I certainly found after the initial euphoria which lasted a few months, everything just became too difficult to contemplate - lost interest in most things, couldn't be bothered to lift a book, whereas previously never had my nose out of one.
Good news is, when you get to lower doses your interest in life generally does come back, and you feel ready to go back to what you liked doing before.
Pred certainly is a powerful drug, and works on your mind as well as your body, seemingly in equal measures of good and bad, but we're stuck with it so guess we just have to go with the flow!
As always you are a source of reassurance, I don't know how I would have managed without this amazingly supportive group, and reading other people's posts. You realise that the symptoms you have are in some degree shared by everyone.
I agree with DorsetLady, the combination of PMR and the preds which manage it really do take it out of you in terms of mental as well as physical energy.
I can relate to your waning of interest in the things that we usually enjoy. I'm sure it's because mind and body are so besieged by the illness and the meds that the energy 'battery' is at best half-full compared with previously, and so easily / quickly run down completely. I have days when it's an effort just to sit at the computer or potter around at home in the morning, and by early afternoon feeling wiped out completely At the same time, I feel 'jangled' and restless - a real conflict between mind and body.
This (almost constant?) exhaustion is bound to be frustrating and annoying, no wonder tempers often get frayed with PMR. I'm sure that, for many of us, it's not an 'age thing' but of course the mind can play tricks on us if / when we're struggling to come to terms with accepting that we actually have quite a serious illness. I've been through it many times - blaming myself for being lazy or looking for other 'causes' for my lack of energy / motivation rather than accepting the reality and unpredictability of PMR!
As many have mentioned here, patience and acceptance are the keys to 'rolling with' both the 'dual demons' (sic) of the physical and psychological symptoms of PMR and the powerful meds that manage it (easier for some of us than others!). All I can say (from experience) is, try not to 'fight' against it as this will only make you more frustrated and angry - and these emotions will in turn exacerbate the symptoms. As DL says, PMR thrives on a bit of Stress!
Finally, it helps to have some faith in yourself to cope with and hopefully, eventually celebrate PMR going into remission. There are no guarantees but, for many, it eventually does - and you do get some energy 'breaks' in between if you get lots of rest and pace yourself in the meantime. I'm sure you'll regain that enthusiasm for the hobbies you love - sometimes we just have to let time do the important work...
You have hit the nail on the head, I feel so much better knowing it's not me, I don't want to be this grumpy person. I think your advice about having to go with the illness is so helpful as I was so active before, and now I have to learn to slow down and even stop sometimes.
I am supposed to be going on a photography holiday to Scotland in February. It will be very strenuous with lots of cold weather and some very high hills carrying a heavy backpack etc, my dilemma is, will I cope.. I am seriously thinking of cancelling as its2 weeks of intense activity.
I doubt I will be better by then.
You have helped me get this into perspective as my attitude up to now has been". I'm not I'll it's just a blip"
I have to accept I have an illness and deal with it.
Maybe keep an open mind about the hol - or at least what you do / how you do things whilst away? It's several months away and sounds like something to look forward to. Perhaps you can plan it so that you don't take on too much physically, and enlist the help of friends / family with lifting and carrying kit etc? Also, if you're feeling a bit better by then (even if not still 100%) but have a comfortable base camp / hotel etc, you know you'll have a 'retreat' to go to if you're struggling. So, less stress and anxiety about not being able to enjoy the experience 100% as you normally would.
I think one of the challenges with PMR is, even if / when feeling wiped out, not to give up Hope on once again being able to enjoy at least some of the things in life that you normally get excited about. Looking forward to (gradually..) getting back in the stride can be a great motivator (and good for those sleepy adrenals?), as long as you're realistic about your limitations.
Yes, accepting what PMR brings is important, and difficult for those of us who've been very active before, but it doesn't mean that we have to give-up on life totally - just to plan it a little differently. When I was first diagnosed a year ago and reducing the preds quite quickly, due to often being totally wiped out fatigue-wise, I gave up on one of my favourite hobbies (maintaining / valeting the family cars - sounds daft, but it's quite strenuous physical work if done properly..) for a few months. I was pretty fed-up about it and wondered if I would ever be able to enjoy one my favourite hobbies again. A year later, I'm back to cleaning / valeting 3 cars in a day, once a month. Yes, kn****red and stiff afterwards - but 'nicely' so, with a sense of achievement and a lovely I CAN do it! feeling afterwards. And, strangely, not too tired the day after.
Ah, Scotland! - a magical place, and your post brings back memories of many happy holidays there over the years. Many a Munroe admired, if not conquered. Glencoe.. Skye.. I'm there in my head right now!
Keep looking forward to doing what you love to do.. eventually. Getting excited about your holiday won't do you any harm - if anything it might just gently start nudging those adrenals into action again. Just pace yourself along the way, and roll with it (but not give up). With PMR, life continues - we just have to plan and live it at a gentler pace for a while
I know it's early days and I must think long term, but this holiday is with an active group of mostly very tall strong guys and women, I am only little and a not so strong female I don't wish to spoil anyone's holiday by being a " hanger on" so to speak. I have to pull my weight and it's no picnic, no warm food waiting at the end of the day, self catering also. The thought of missing out on days out and holding folks back is high on my not to do list, I may get the chance to do this another year. If I do cancell, I will have a warm sunny chilled break somewhere else.
You're welcome Riversnan. Sounds like you're being realistic, but good to know you have a plan 'B' until you're feeling stronger. Scotland will always be there!
Agree with Mark - Scotland's going nowhere, so let it rest on the back burner until you're well enough to enjoy it!
You can still have a break away, but much less strenuous, and where you can do things at your pace, and not feel to have to keep up with others.
If PMRGCA does anything good, it teaches you that YOU have to come first sometimes. That's not being selfish, but realistic, sometimes it's good to say - no thanks, not this time.
Well put Dorset Lady I think I may have come to a decision, I will be dissapointed when the time comes and the others go, but, there is always another time.
The fact that I have been struggling with carrying all my gear, plus heavy tripods etc make me realise I am not up to it.
Good for you ,If you had gone and come back dissappointed and frustrated it would have knocked you so far down and that is not what you need right now .
Hi Mark B - always enjoy reading your posts and think its delightfully refreshing to have a male articulate in detail the intricacies of PMR - not that I am saying the very few other males who post threads haven't but, you have a great knack of going above & beyond.
Many thanks for your lovely feedback. In my ramblings I always try to say something positive or helpful that might add to others' experiences. Either that, or something that will at least help people to smile on the journey. Fortunately, my mischievous SOH hasn't been a casualty of PMR!
Yes, us boys are in the minority with PMR / here and so I feel privileged to be taken seriously by you girls!
A side effect of pred is personality change and I was told to warn friends that I could become grumpy. My sister said no one would notice the difference!
Hi Piglette - interesting comment you make re side effect of pred being a personality change - can you or anyone else elaborate on this aspect & what is happening for this to occur?
On my many scribbled notes on my desk from limited research I have found on the net is the following:- steroid affects the "HPA" (hypothalamus pituitary adrenal axis) when taken longer than 7 days ........................
My question would be - if or when we are blessed to go into remission & no longer require steroids, does the HPA return to normal, whatever that may be?
The HPA axis effects include the ones I've mentioned above (er, below actually, since this website orders replies strangely), the regulation of certain cognitive functions, such as 'executive' planning, short-term memory, emotional impulses, responses to stress hormones such as adrenaline and cortisol, as well as responding to appetite triggers. So, as the steroid doses reduce the effects on the HPA functions start to become less. In a very basic sense, prednisolone, especially at the high doses, means that we don't switch off or regulate our instinctive impulses as quickly as we would when not taking it. We respond much more quickly and in a more exaggerated way to small triggers.
These effects lessen with the reduction of the prednisolone dose. It may not be immediately noticeable with a gradual reduction plan but it does happen.
As for your question about personality change, well, that's not really to do with a fixed entity that changes with an illness or a medication. Our personalities are fairly well established by the time we reach early adulthood. The experience of coping with a chronic illness of sudden onset and all the adjustments we have to make can be difficult. How each person responds to that adjustment process is influenced by our personalities and established coping strategies. Sometimes a coping strategy can be very effective for one set of circumstances, such as a busy working, multi-tasking life, but doesn't transfer easily to a different set, such as being slowed down by PMR or GCA and unable to continue facing each day in that way. We have to acquire new ways of living each day whilst unwell and that can be a difficult process if slowing down is not what we are used to. That can lead to feeling frightened, miserable and frustrated, on top of being in pain and unable to sleep.
There are two aspects of prednisolone that can feel as if they might be a 'personality change'. One is feeling very short tempered. The other is that steroids can cause significant lowering of mood or feelings of being hyper-active or in severe cases having hallucinations that can be very distressing. In some people these can be extreme and require urgent professional psychiatric and medical help. Strictly speaking, these are drug effects, not personality changes, even if the person appears to have a changed personality.
Cloudgazer 6 - this is most interesting & of course I have re-read it several times - will continue to do so as my brain soaks up more in the ah ha basket with each re-read.
I guess my interest with piglette's comment re "personality changes" comes about as my PMR journey of 18 + months has seen many changes in my health having a flow on impacting my psycho-social paradigm.
I have become more reclusive to cope with my day to day life, not only the discomfort of the PMR + disinterest in making the effort, but my lack of immunity. I am prone to respiratory issues in the past but more so since being on steroids - found I picked up every virus in circulation.
I appear to have a great day where I feel 99% & the next day see's me a bit below par - secret not to overdo on the good day.
I have dropped one or two long standing friends simply because they did not appear responsive when I asked a favour when in the past I would drop everything to assist them. I call this the changing seasons of life.
Like others I don't suffer fools gladly where as in the past I would be inclined to let most things flow over my head, within reason of course.
Most importantly my precious husband has absolutely no interest nor would even know what PMR is or consists of hence I think & feel the reason for "mostly of the why" I have become reclusive. I am a full time job looking after myself & him as well.
Oh by the way........ I intend to take myself on a pilgrimage next weekend with a bus load of strangers - I have never ever done this in my life especially on my own, can't wait, bring it on.
You know what? I think that rather than become reclusive in a negative sense, you’ve been on a journey of adapting to a new way of life - but of course not one you’ve chosen to have thrust upon you. It sounds as if you have been making some really understandable and sensible decisions in pacing activity, doing what you can when you can, and keeping yourself as protected as one can be from obvious infections when you’re on immunosuppressants. Not that I imagine that any of this has been easy.
Like you, I've had problems with infections. I’ve found that being very upfront with friends about infection risks has been fine with them. They’ve even started checking with me if they have a cold about whether they should stay away - they never take it personally if I ask them to postpone meeting up. I think they are glad to have some guidance about what's best.
I like your idea about changing seasons of life. It is often said but it turns out to be very true that it’s at times like this we learn who our friends are, or rather, who we want to continue to be friends with. I think that we make friends in so many ways, over time and in all sorts of circumstances, and sometimes we might not choose the same friends now that we made many years ago. It doesn’t mean we always have to continue to be friends with them. I’ve discovered new and extraordinary friends through being ill and have also found out how supportive some of my long-time friends can be when I’ve not even realised I needed them to help. It’s nearly always been the everyday, small things that have turned out to mean the most. Other people have turned out not to be helpful - or not known how to be a friend to someone whose circumstances have changed - and I’ve decided to leave those contacts aside for the time being.
I can’t remember if you’ve posted before about your husband not understanding about PMR; apologies if you have and I’ve forgotten. If it would help, the NE group has made a good DVD to help explain about PMR and GCA to friends and family members. Someone recently suggested cutting and pasting into a document some of the descriptions and suggestions people have posted here to show to their relatives. I hope he can come to understand eventually a little of what you’re going through.
Going on a pilgrimage with a bus load of strangers (and potential new friends, I hope) sounds the complete opposite of someone who is a recluse. It sounds exciting and very enterprising - I hope you enjoy it. Who knows what you’ll decide to try next?
All sounds very familiar to me - however, don't panic yet. I had 5 years of PMR without pred - the things you describe are all very typical of PMR I think. I never suffered fools gladly but it was increased greatly during those 5 years. Initially the pred added to some of the things but over the last 7 years all have faded to perfectly acceptable levels - except when I am tired and having to cope with someone else! Leave me to my own devices and let me die in a corner on my own and I'm fine - unfortunately my OH isn't quite as sensible as that! I have to live with that - doesn't stop me snapping back though! (Like last night in a hotel room - the bar had shut and he doesn't go to bed until midnight and wants to watch Sky News International when it is available. Me? 10pm. And I hate Sky... You can imagine the result??????? Fine this morning...)
Scotland? I think I'd defer that pleasure and anticipate a pleasure gained - it will be much much better when you are a bit further down the road. I'm not sure I could do that even now - but I CAN do things that a few years ago would have been a pipe dream. But I can only do them happily when I know there is a safety net - an important part of which is being able to say, sod it, that's me for today and don't knock on the door even to give me a cup of tea. Which won't be an option on the sort of trip I suspect you are planning?????
All this is so reassuring I am so glad I posted today, I have been getting so concerned about my, ..as I believe Piglet referred to as personality change. I have always had endless patience and am normally very placid, mind you it may do a few people I know a lot of good to have a different view of me..... YES.
Scotland in the winter is a subject I have wanted to photograph for a long time, but to be honest I haven't got the drive or interest at present, due to this illness. This decision is the best at present.
Yes it will be very hard and intense, I know I would have been wiped out after 2weeks before I had this illness, but I would have done it. Talking to all you lovely people has made me see sense and I would be mad to go.
The expense of the holiday would be wasted if I couldn't go out for some of the days.
I will do something else which will cost a lot less, and do me some good.
PMRpro , You are a tonic !! After meeting you 2 weeks ago I have tried to reassess my PMR and just talking to you was a booster because you have been through so much as well. I have been made to feel that it's Me in the wrong all the time but you have knocked the nail on the head when you wanted to sit in a corner and die and to Riverbank I have fought for 13years to get better and not spoil anyone elses day because of my condition ..My partner hates that I can't keep up and do more but I make myself rest in the afternoon depending on my exhaustion, I get pushed to do more when I know im not capable of it like Can't you load the washing machine before your rest ?and I give a snappy No back!! Don't get me wrong he is 76 and hates getting older and does a lot for me, but Always expects more of me. I have found that PMR goes well with rest and today I am more relaxed because I had my Bowen Therapy treatment yesterday and it was wonderful..I'm no further down on the Pred but I just keep trying..The posts on here lately have been very interesting and a lot have applied to me which has been helping me through a bad patch ..i say to my Family and Friends just don't take any notice if I snap back at you I don't mean it ..i have spent 13 years saying sorry for my Condition and what I've become .. Best wishes to everyone fighting this Chronic Condition and with this Wonderful Forum and Advisors we are Not Alone ..trish29
I suffered burnout syndrome years ago, not a million years before PMR, and, after a rather iffy year with very poorly trained counsellors and a psychiatrist who seemed to do nothing much in the lengthy sessions we had, I was able to finally get an appointment with the GP practice clinical psychologist service. Jonathon was amazing - previous therapists had suggested it was me who had to change because there was something wrong with me. He seized on the opposite aspects: yes, I didn't necessarily fit in but that wasn't bad, it was just different. I was as normal as his wife, he said - we could have been twins!!!! It wasn't the entire answer - it's taken a long time to get where I am now - but it gave me a basis that also has helped with PMR. Realising that my husband has a lot of traits that fit him nicely into the autistic spectrum has also helped. Instead of feeling guilty - I just say no or ignore it. Usually in a fairly friendly manner but occasionally I explode - like the other night.
That's very interesting PMRpro !!My Bowen Therapist is a Good listener and if I start to cry when I'm updating her on how I've been since my last treatment she says "just let it out it's good to get it out your system". I did e-mail my Rheumatologist last week and it was suggested that I stay at 13/13.05 pred and persevere with the pain but that's just not possible,i was like an old lady of about 90 so I am back up to 15mg I wouldn't have got out to my Therapy or off the bed,i aim to stay at that this week or longer if necessary and pray that we can have a quiet week. I believe this Burn out syndrome will take a long time but the more we learn through our own pain helps others because most of our problems get put down to PMR but my Special Doctor at Chertsey ( you know who) does subgest that in my case it is the PMR..aaahh!!best wishes trish29
I try and Do as he says PMRpro but to me at 70 years old I feel that No 1 thing on my list is Day to Day Quality of life..and laying on the bed in tears and unable to move and not being able to look after myself re shower or dress myself is not the way to be ..so I listened to what my heart was saying and upped the Pred ..I'm not out of pain completely but it's bearable and I feel better in myself and I can't feel any inflammation at the moment ..you take care trish 29 xx
Yes I am very irritated by my own inability to get on with things the way I used to . I am beginning to feel like a recalcitrant child . I struggle to do the things I really want to and give up too easily sometimes and I have no idea why . I have gone from the biggest multi tasker in the world to the most disorganised ,bull in a china shop . I blame the Pred or me or PMR or me or osteo athritis or me or the thyriod OR MEEEEEEEE LOL or the job I do . Try one thing at a time Dorset Lady is right the initial euphoria leads us up the garden path . One thing at a time ,rest one more thing .It does get easier its just different and it depends . I say my teprament has changed but I wonder if it has or that I was so very busy busy busy before I had no time to get so frustrated .Whereas now I have the time as I stand looking at things incompleted to get irritated at the the time I have not used wisely (Problem with the upbringing ) Don't worry you will find a balance .It's just different .
You have hit the nail on the head, that's how I feel, I start to do something and lose interest part way through, then.. Get cross and frustrated with myself for not completing.
I am also wanting to eat something all the time!!!! I am not hungry...just greedy.
Having a bit of weight gain, no self control either. I feel a bit ashamed to admit that.
Feel the same way as you and the others. What I do find is if I'm able to complete some little necessary task (and I don't mean the stuff that has to be done every day or every week, like the dishes or the shopping) something like tidying up the junk drawer, for example, or dealing with out of season clothes to send some off to Goodwill, that makes me feel better about myself. At least SOMETHING got accomplished! And if it only took ten minutes, or one hour, still it was an achievement. Sometimes it's quite hard to motivate myself to do even that much.
Not sad at all it's a weird condition my house always clean and tidy no matter how much I was at work or out doing stuff ,degenerated into a b,,,, awful mess when this started . I still dont have it where I would like it even though I have reduced the working hours to 30/40 instead of the ridiculous hours I was working . Just had 2 months off and done nothing to what I planned .Sigh and eat Oh yessssss well i have always had an appetite but now ,Gasp . I am managing to combat that somewhat by having porridge for breakfast and lunch because it stops me feeling hungry and I know that is not the best thing but I am very weak at dieting . Hungry I think is the steroids or is it stress eating or both . It is what it is find a way round it that suits you ;-)This post sounds all about me ,hahah it's more to say yes what you are experiencing is probably not unusual . I get angry with myself but if I am honest it is a trait I have always had . Just everything seems more intensified dosn't it . Try to stop feeling trapped by it .easier said then done work within your limitations for a while .Then you can become like me give advice and dont take it
I was just as you described yourself and I would have thought I was the healthiest person out there at my age. Stress plays tricks and now we are forced to slow down and appreciate the quiet things around us as we heal.
Frustrating when you want to continue with your normal lifestyle an you feel a fraud saying " I am not up to it at present" . As you look as you normally do and thankfully, with the pred, move as you would normally, they don't see it. I hate admitting I have a problem but accept I have to change.
Prednisolone on its own affects the cognitive processes that deal with memory, concentration, planning and completion of tasks, multi-tasking, sleep, impulsive reactions, stress management and appetite - and that's before you factor in the effects of the illness itself!
So, don't worry. You haven't permanently turned into a lethargic, quick-tempered, ravenous monster. Things do get better slowly but surely as the steroid dose comes down. It's very disconcerting to find that a medication that is essential is also a truth serum in the midst of what feels like a temper tantrum. I've found it helpful to tell friends and family that I'm having 'a prednisolone day' or 'moment'.
Please don't feel ashamed about your increased appetite; it is very common. It's caused by the prednisolone. You might find it helpful to search on the forum for some of the advice threads on how to manage it. Let me know if you can't find them and I'll find a link for you.
As for the loss of interest in things you normally enjoy, I've found it very strange not be able to read or do even the simplest of things that I usually like doing. You can't do much about it as it's not you failing as a person, it's the drug doing its job.
Rather than fight against it, I have found that it helps to notice that there are good things about having to do one thing at a time. You might also start to notice that there is an hour or so in the day (or night!) when concentration is better. I have a small window of less foggy thinking when I first wake up and then again in the early evening. I think it's related to when the prednisolone is at its lowest effect for me.
Good luck. It's a process of adjustment. Not easy but it has its compensations. I enjoy just looking at things and designing projects in my head, storing up plans for when I'm better.
Yes Riversnan, all of the above. My little grandson Theo helps me to connect with my inner creative child though. We spent ages the other day just washing sea shells then putting a sparkly marble in each clam shell. Totally in the moment, his excitement driving us along. Not minding splashed water or the seemingly pointlessness of the task. His stiff bodied celebration of this small creation taught me something about patience and just being exactly where you are in the minute. Do you have a little person you could borrow?
I have thousands of shots on Lightroom that need editing, the last from a trip to India in tiger reserves almost three years ago...I am ashamed to say that only a handful have been dealt with. I find it easier to have a nap. The pics will still be there when you feel better and often the longer you leave them the fresher your ideas when you go back to them.
I find have no patience in the car.... there are so many idiots on the road these days. Did you know that it is now illegal to make hand gestures (and we all know what I mean) to other drivers? I discovered this on Westminster Bridge a few months ago when I was having an altercation with a chap who came up a bus lane inside me and then barged across me....I then hit the horn which alerted a couple of bobbies on the other side of the bridge that I hadn't seen and I then proceeded to exchange hand gestures with the chap in question who then got out of his car and walked back to me.......hooray for central locking. The police stopped him and gave him a severe talking to as they could see from his car what he had done but they then told me off for making 'obscene gestures', which of course I denied. So now the only way is to content myself by screaming insults with all the windows tightly closed!
Fascinated by the Tiger story wow! No wonder the Road hog presented little challenge. 👋
Haha! This is a really interesting chain to me, particularly today. At work I'm normally complimented on my patience but today I was livid twice and succinctly aired my feelings to colleagues on stuff at other times. I was enjoying reading the above responses but, guess what, it's 21.30 and my concentration on this has now gone and I'm off to bed for some P & Q and hoping to get back into credit on sleep and patience for another day at the office tomorrow!
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At the same time, I feel 'jangled' and restless - a real conflict between mind and body. 
Insomnia from Pred or Lack of Melatonin?
Blood sugar monitor 
Do I have symptoms of PMR
How long does the deathly fatigue phase tend to last when adrenals are kicking in at lower doses of Pred? 
