Hello. Could someone help me to understand why it is so difficult to concentrate? Is it the Pred or the PMR? I have been trying to balance my bank statement and it feels as though my brain has been wrapped in cling film, the brain fog is awful😶🌫️ 🤯
Concentration: Hello. Could someone help me to... - PMRGCAuk
Concentration
71 Replies
•
PMRproAmbassador
"Is it the Pred or the PMR? "
Basically - yes! PMR itself can cause it, it is a very common effect of almost all autoimmune disease. But in some people pred can cause it too, especially at the higher GCA doses. So some people have no problems, some have problems due to one or other and some have it due to both.
In the early days of PMR no pred I can remember rereading paragraphs to be translated or that had been translated to be sure I had got it right!! Then on another day - no problem. Being tired or otherwise unwell makes it worse - and so, needless to say, does being stressed, So you start on your bank statement and get in a minor muddle, you get stressed and it gets worse.
I have to say - I am a very bad girl, I get my statement, skim through it and if it looks reasonable compared to the major outgoings, I accept it. I pay for absolutely everything on my card or by transfer in the bank (we still have a branch in the village) so it is all traceable but a lot of entries. Digital banking is instant, not like the old days where you had to wait ages for a cheque to go through. I did notice that they had deducted a whole YEAR of charges one month here in Italy - should have been 1/12 of course. - so I obviously do register what is there and I do see payments I think "what was that?" when it is a strange name.
DorsetLadyPMRGCAuk volunteer
Very common - this was written on lupus [another a/i condition]- but it’s applicable to many situations -
lupus.org/resources/lupus-a...
• in reply toDorsetLady
Good morning to you both and thank you. I tick all the boxes for cognitive problems in the link Dorset lady.I feel reassured strangely. My maternal aunt developed Alzheimer's in her early 60s and it has been at the back of my mind as I am almost 68.
I think I still try to do too much, mentally and physically , I get so exhausted 🥱
Hubby is away for a few days, I have some thinking to do before my appointment on Friday.
"I think I still try to do too much, mentally and physically , I get so exhausted"
Neurodivergence at its game - my daughter is in a similar state at present with courses and exams and work needs. I don't really know what the solution is. But one for you is to try not to worry it is dementia - it isn't!!!
• in reply toPMRpro
I realise that. Aunty wasn't aware that anything was wrong 🙄I tend to overthink everything, our grandson and son are the same. They are both on the ASD.
All the best to your daughter for her exams x
Hi Lady Jane,I call it PRED HEAD,unless I write appointments etc down asap,I am done for.Same as shopping,I do a list,and leave it indoors and end up buying stuff I don’t need an forgetting stuff I do,OH has dementia and asks me to remind him about things in case he forgets,well…………….. 😜🤯🤯🤯🤯😱
I filter important stuff through my partner. Christmas shopping has been a challenge with strange items arriving for my grandchildren, that I have no memory of purchasing. Yesterday I lost the word for “shoulder” and came up with umbrella. Yesterday I had a pain in my left umbrella. This has been going on since 2016. It was distressing when I worked, not so much now.
Do you know what causes it? I lose words, can't think of the name of things. I put it down to ageing but now I'm not so sure.
Angelsmummy• in reply to
pred,age,stress,time of the year,just a few of what it can be!x😜
Another which comes to mind, linked with stress, is 'overload'. The more it worries us, the worse it is. I am ready for a desert island - warm, not hot!
Me too,always been a worrier but am finding with age and Pred that I have little capacity for people whose problems are mainly due to their own fault,and think it is ok to dump all their tales of woe on me and get upset when I tell them what they really don’t want to hear!They honestly think that “ tough old me” is better now so they can give me overload!Getting to the point like you Herdy,Would love to go somewhere remote and let them all get on with !Have made a promise to myself that if OH passes before me,I am moving far away enough to escape the chaos!I sound really awful,but as far as I am concerned,my time now is to look after OH ,animals and myself,all the rest of ‘em are big enough to find their own way in life!Absolutely torrential rain here,still better than snow eh?Hope you are well?xxx🌼🌼😜😡😡😡
• in reply toAngelsmummy
Good morning, We have woken up to snow here in the Midlands ⛄
Angelsmummy• in reply to
WOW,bet it is pretty?Best you snuggle up in the warm and watch from afar!xx😜🌼☃️🫧
• in reply toAngelsmummy
Yes, I have cancelled an appointment as hubby is away and I can't risk slipping as we live on a hill
At our ages somewhere remote brings its own problems!!! One thing that does help with having a chronic illness is to withdraw from negative people. Trouble is, you do need to be comfortable in your own skin being alone - which is in no way the same as being lonely! Lonely is bad - alone is not.
I live in a village with good public transport to the hospital and all that is essential in the village, 300m or so away. I have lots of acquaintances is, no "best" friends but nice neighbours who are helpful if I ask. Not even "best" friends would help you empty your freezer that had thawed after a powercut while you were away! It could have been worse, just totally thawed but not yet totally stinky, but really not nice. Heidi brought a bucket and scissors to take all the meat products down to the bio bin where it belonged - luckily it was to be emptied a day later and is always a bit smelly! But they don't hang over me ...
Well said,probably not remote for me but away from the people around me who even though they take me to appointments ,shopping etc,for which I am truly grateful,and they get paid for it,( family) they have such chaotic lives,always a drama and am beginning to dread going shopping with her every week.No matter how many times I say that I do not want to hear all the constant drama,you can’t teach stupid,it continues!So I am now thinking that maybe I will have to make alternative arrangements ,please or offend.Have always had to be the matriarch as such as OH is always for a quiet life but I call that sticking one’s head in the sand!Maybe I should adopt his attitude …..SORRY for off loading,but don’t we deserve a bit of peace at our age after bringing them all up and hopefully teaching them the right way?xx🌼😜🤬🤬🤬🤬😡
My lot don't usually tell me anything until it is all done and dusted! One daughter is ADHD (so is her partner) and a bit chaotic - and the one I will be living with. That's why I need my own space!!! But she is a nurse and very good at her job. The 2 months in the summer were doable even though I was living with them.
Lucky,lucky,you!There is absolutely NO WAY I could live with my daughter and her partner,I would end up being done for murder or have a complete breakdown.My patience is really naff at present,floods of tears over something silly or opposite end of scale ,over the top.Just trying to get them to understand is well…….I must try and be more tolerant of them I guess but as my mother said to me when my first husband was physically abusive to me” I told you not to marry him,you’ve made your bed now you have to lay in it!”Perhaps the Ukrainian army could do with a one eyed sniper,or I could join the foreign legion ,just a thought!…….😜🌼🤬🤬🤬🤬😪Rain stopped ,everywhere sodden,as long as we don’t get flooded out like last winter,after all it is the season for it.How is your snow going?Do you ski,maybe on nursery runs,or is that a really stupid question?
I used to ski but stopped about 7 years ago after illness and injury. I could have started again but looked at it sensibly: I needed all new gear, skis, boots, clothes - that alone was well over £1000, Then the ski ticket for the whole season was another £700 for the one I wanted - to escape tourists here occasionally! And it wasn't as much fun any more, no empty slopes until 10,30, everyone was going up at 9am like me! And carver skis really spoilt it - you can get from top to bottom after a couple of hours instruction but that doesn't mean you can ski. Tourists thought they could but were skiing outwith their capabilities and if something went wrong, they were very likely to cause an accident. And everything was so expensive. Loads of my neighbours gave up about the same time.
WOW,must have been great,don’t think I would ever have had the nerve,self preservation!Damn tourists get everywhere dont they?😱We dread the summer up here,everybody coming to the Norfolk Broads etc.Got every right of course,good for the economy,but shopping,roads,parking etc become a pain.Thats the good thing about the colder months here,nobody around,life goes back to normal,whereas you in Italy get it all year round don’t you?Shame….xx🌼😜
November is pretty dead, and April once it is too warm for decent snow but too much snow on hiking trails for safety. But Saturdays are still major changeover days and we go nowhere - traffic jams along the one and only road along the valley. Be even worse next year with the train off for major building works. They keep telling us how wonderful it will be afterwards ...
Wonderful they say,for whom?Probably entice more people there.That is the trouble living in such beautiful places isn’t it?During lockdown ,once people were allowed to meet up outside,all the townies descended onto our beautiful heath and river,could not get a place to park anywhere to take our dogs out.Plus all the litter,dog poo,and other paraphernalia.Treated it like a rubbish tip,not showing any concern for the swans ,deer ,Exmoor ponies and other wildlife.Made me so mad especially as there are bins plus dog poo bins dotted everywhere.Perhaps I should live remote,!When I first lost my eyesight and got this disease ,I was very lonely,not being able to drive anywhere I liked but I have got used to it I think,and don’t feel lonely any more,and maybe the state of mind because of Pred etc. I am better off not seeing too many people!xx🌼🌼😜🤣🤣
Probably not as it is aimed at people commuting from here to the regional capital, Tourists can't be doing without their cars to bring all their stuff and get to the remoter corners while here. Our bus service is amazing but doesn't go that far. The trend to shorter breaks doesn't help, almost twice as many arrivals and departures when they come for 3 or 4 days instead of a week. But the worm is turning - we all know the region is so prosperous because of tourism but it is getting too much now and people are objecting. Tourists get a travel card included in the tourist tax - which they would pay anyway - so travel free while we still pay. Not perceived as fair whatever the politicians say.
DEFINATELY not fair and as you say,the politicians don’t see it that way,the same as over here.Cutting our local buses,that would have been great for me to do that once a week on my own but that will not happen now.That is the only bugbear of being rural,if you don’t drive you have had it!2 visits to hospital in 3 days for hubby £140!But a necessity to get the taxis for him.But never mind,grandson went into loft at weekend,got all my Xmas decs. down so am looking forward to putting them up for when my gorgeous great grandson comes down.Gives me such a lift seeing all the lovely things we have accumulated over the years and guess what,I have been listening to Heart Xmas on the radio all week!Asked OH what he would like for Xmas dinner,he replied “Bacon Pudding” so that is what he shall have.Me,I am going to have a prawn curry !
Our tradition for years on the 25th was pizza!! Have to cook the 24th as nothing is open in the village - all at home doing Christmas. Years ago when we were having our ski holiday we had lunch up the mountain and went to a hotel where a lot of Italians went in the evening - wonderful but not expensive. My younger daughter always had Kaiserschmarrn, a Tyrolean pancake, and my husband had Wienerschnitzel! But he always had Schnitzel wherever he was!
So we are not weird with our choices then?We only have brief visits from family before Xmas Day and daughter Xmas morning as OH cannot cope with lots of hustle and bustle.We used to go out to his workshop,all decked out,roaring fire ,all the animals and have our day out there.Peaceful to say the least ,then all the family would come in the evening for a big buffet tea out there and roast chestnuts.Didnt care how much mess they made ,OHs domain!Now we are happy with our meal,Xmas films and I might treat myself to a bottle of Prosecco!Just thinking about it gives me a warm glow!xx🌼😜🎄🦌🧑🏼🎄🎅🏼
NOT the Christmas films - heck, no. Christmas here is totally different, much prefer it.
How is it different..?Love the Scrooge films,seen them SO many times am nearly word perfect on them.Dont watch the Bond films,hardly Xmas is it?Just anything cheery and festive does me,and I love watching the choirs from Cambridge College,now that IS Xmas!xx🌼😜🎅🏼
• in reply toAngelsmummy
The Muppets Christmas Carol with Michael Caine, brilliant and beautiful 🥹
Angelsmummy• in reply to
Never seen it I am afraid.Got enough muppets around me without watching more!xx🌼🌼😜🤣🤣🤣🤣🎅🏼
Exactly - the fancy Advent and Christmas music that I and OH used to sing for multiple choirs. One year I just went from German to Austrian to Italian to Swiss TV for concerts! Now I can get UK TV so Cambridge and the like is back on. Locally, Advent is much more meditative, preparation for a big Church event, and CHristmas Eve is centred on the church traditions. And Christmas markets of course - though once you have seen one, you have seen them all!!! But most locals will be out skiing or other snow sports on Christmas Day. No turkey of course - no real fixed "This meal is Christmas", Christmas Eve is often fish or soup with sausage - quick easy and simple before the presents and then to church.
Wow,so you were a singer,wonderful!Just love the Xmas choirs,gives a real warm feeling doesn’t it..Starts Xmas with a bang,gets one in the mood for it all.Fish soup and sausage!😱🤮🤮Sorry,makes me heave thinking about it.Lucky we are all different with different tastes eh?xx🤣🌼😜
They are lovely - and you are a lot less likely to get indigestion!!!
DEFINATELY would not get indigestion with my prawn curry,the hotter the better!xx😜🌼🥘🥘🥘🤣🤣🤣🎅🏼
• in reply toAngelsmummy
,🥵🔥
Angelsmummy• in reply to
LOVE a curry,probably all the holidays I spent in India !Dont eat meat but adore prawns….Glad you got a good response regarding memory etc,I call it Pred Head.Afraid it is just part of the condition,though my dear daughter is now likening me to my poor OH with dementia,she really has no tact.,Still think my marbles are better than hers!Glad you are on an even keel now,better to have people around you who know what you are going through than try and deal with it on your own.It affects us all in different ways,and today I am a bit all over the place as it looks like OHs prostate cancer is rearing it’s ugly head again,so just having PMRpro have a bit of banter with me has taken my mind off it a lot.Expert advice,sympathy and a dash of humour goes a long way Dont you think!xxx🌼😜🥘
• in reply toAngelsmummy
Fish soup & sausage 😂PMRpro said fish, or soup with sausage 🤣
Thanks for the chuckle, very timely as feeling alone. Just had video call with daughter and baby grandson. I miss them 🥹
Angelsmummy• in reply to
See what I mean??My brain said “ fish soup,and sausage “ Now you know you are NOT alone with your muddled head!🤣🤣🤣🤣Lovely that you had a video call with your daughter and baby grandson,I get SO much pleasure from my great grandson.He is my world.Gentle,loving,not a bad bone in him.Whenever I see him he asks if my eye is better and that he is looking for a new one for me!Will you see them at Xmas?xx🌼😜
• in reply toAngelsmummy
Yes, hopefully. Son in law is not working at Christmas this year 🙂How old is your great grandson?
Angelsmummy• in reply to
He is just eight.Slightly autistic but oh so clever at maths etc.Never asks for anything when I take him out but of course he gets spoilt.He is more than happy when he comes to me to draw figures of Pokémon and I cut them out.He is not materialistic at all.He sees joy in everything when I take him out,even the squirrels in the Abbey gardens eat out of his hand.He is truly a blessing.No doubt you feel the same about your new grandson.they somehow give you purpose in life Dont they??Glad you will have him for Xmas.xx😄🎄😜
• in reply toAngelsmummy
He sounds delightful. Our 11 year old grandson is autistic, high functioning. He is an amazing boy in how he deals with it, but full on and tiring. He loves to come for sleepovers without his sister.
Angelsmummy• in reply to
My little man is quiet as I say,but he makes up a story,very imaginative,and it goes on,and on and on and on….Bless.,🩵🩵
I LOVE fish soup - especially in France ...
REALLY???Could not bear the thought of it,makes me shudder….Like my fish as it is ,not swimming around in a bowl of soup,YUK!Must be an acquired taste…..🐠🐠🐠🐠
Didn't take me long to acquire it ...
Just cannot be adventurous like you,like plain food ,like to see what I am eating!Still,if you enjoy it,good for you!x🤣🤣🤣🐠😜
But you eat curries?
Ah,but I make my own from scratch,not that I have had one for a long while,but on reflection,all the ones that I ate whilst in Goa and Kerala from mainly beach shacks I shudder at the hygiene issues,must have the constitution of an ox( or did have!) Freezing cold here this morning and have got a humdinger of a cold and sore throat,always wear a mask when I go out but guess the pesky germs can get in anywhere !xxx🌼😜🫤😤
I find it so frustrating. I try and concentrate on something and it is like being in a grey mist!
Pre diagnosis, my husband said he noticed that sometimes I was a bit vacant. As though my mind was elsewhere. Now I sometimes lose a word or name that I’m looking for. Very frustrating.
Dear Lady Jane,Thanks so much for bringing this up. It's reassuring to know that so many of us have this problem ,and we're not just losing our marbles. I wouldn't even attempt to do any bookwork these days. Just answering letters is a real task.These are the things that annoy me.
I can't remember any dates of appointments, deliveries , or friends visiting without having the calendar right in front of me.
I can't add up accurately any more....have to keep double checking and then it comes out different every time.
I spend ages looking for something thats right under my eyes.
I go to get something from the fridge, then can't find it because I've left it in the fridge. That's because I get sidetracked thinking about my next shopping list.
I can't remember if the dog's had his dinner or not.
I often have to talk to someone who phones me while disguising the fact that I've completely forgotten their name.
Getting out of the house with everything I need to take with me is hardly ever accomplished in one go...I always leave something behind and have to unlock the front door to get...a different coat because it's too hot or too cold when Iget outside, I've forgotten my mobility scooter keys, my handbag, my sunglasses, my stick, tissues, shopping bag....the list goes on....and then...hang on,
did I lock the back door?
Thank goodness, it's not just me,
I can blame both the illness and the cure!
P.s
Not long ago I bought myself a lovely bunch of flowers . put them in a vase with the flower food, and wondered why they died over the next few days. Wasn't till I went to throw them away that I realised I hadn't put any water in the vase.
• in reply toPris80
Thanks for sharing, it's reassuring that it's not just me but it doesn't really help. I hate it but am coming to terms with it a bit better now.
Pris80• in reply to
So sorry, I didn't mean to make you feel worse. I was just poking fun at myself, which is pretty much how I approach my life these days, and hoping someone might recognise some of the silly things they do themselves. There's some consolation for me in knowing that that I'm m not alone, which came from the comments the people who answered your post made, because sometimes I do question my own sanity.
I wish you all the best. Pris
We call it having a bad day with the worms (words, but one day I called it ‘worms’ & that stuck! I have it to some degree every day, due to other medical diseases, & just hope, when I wake each morning, that it maybe a better day. When you discover a poor day, don’t do the bank account…get used to it, most of us have it, to some degree or the other! I hate it when I’m talking to strangers we meet out walking, & just having a pleasant chat to…they don’t know me at all, & I’m sure most think I’m mentally incapable!! Just accept it, & remember PMR is not life limiting & will go into remission at some stage. Sadly my problem with the worms, won’t! Think positive, not negative, look forwards, not backwards, practice acceptance, & be grateful it’s only PMR! Lots of folk with life limiting diseases would change diseases with us at the snap of a finger!!
• in reply toPixix
Thank you for your thoughts. I know, of course I do. Our son in law and his mother have Huntington's disease but the fact doesn't help me. It is all relative.Some years ago I had an impression of a toothache and a broken leg after our son said " there's always someone worse off than you mum". It went like this
'I have a toothache, you have a broken leg. Your broken leg is much worse but that doesn't make my toothache any less painful.'
Pixix• in reply to
Hm…interesting…ah, well, it helps me to think of all those worse off…& I’m so grateful I don’t have a terminal disease…that helps give me a perspective, I guess. After all, PMR isn’t that bad a thing to have, or that complex. I would keep it & give up most of my 12 diseases instead, if I had the choice!! It’s not a huge deal. It’s great that it has a treatment, steroids. Yes, they have side effects, but they aren’t awful, compared to other drugs. But then my cup is always half full!
Hi,for me, it’s the PMR. I also have Ankylosing Spondylitis; my PMR is untreated and by far, I have much more brain fog and concentration/memory problems since having PMR. However, I believe it’s the exhaustion that causes it. I’m far more fatigued with PMR than AS.
• in reply toBramble2000
Thank you, yes, the fatigue is difficult. I am trying to learn to pace myself better
This kicked in with me, seven weeks after being diagnosed & on Pred.
Sorry to say, i'm still the same now some 9 months later.
Only good thing is before spring it was a constant every day. Since then it now comes in waves every day with a base level of just being tired.
GP is still probing & believes I have PMR along with 'another'
What the 'another' is we do not know.
Will be on the waiting list to see a rheumy but from what I read about them, I do not have much faith.
While we should not self diagnose ( but you can't help but research when no answers are coming) ....my symptoms match MS....or....i'm just suffering real bad with PMR & Pred.
Think it's a triple whammy for me on top of late states of peri-menopause. My brain fog has not responded to HRT and despite rheumatologist stating there is no connection to PMR, recent research showed 71% of us suffer cognitive decline. Steroids definitely affect my short term memory and more recently my brain literally feels empty which I assume has something to do with stuttering adrenal glands. I had a CT scan few months ago and awaiting full cognitive assessment whilst knowing little can really be done about it
Think you rheumy needs a reality check - PMR is an inflammatory autoimmune disorder, inflammation and autoimmune are often associated with brain fog in other things, so why on earth should it not be associated with PMR? What a closed mind they must have, no scientific curiousity.
I printed off last years research and left it on the rheumatologist desk at last appointment. It wasn’t thrown back at me but discreetly covered by other files so hopeful it might get read. Never mind curiosity - as a professional they should be aware of advances in medicine
They think they learned it all in training ...
Surely they have to undertake continuing professional development ?
I work in a different industry but would get struck off if I did not study required hours/topics and submit annual records to the regulator
Well they do - but very few rheumies or GPs would choose to do it in PMR or GCA! It seems there is a belief that PMR is a benign, short-lived illness that is beneath their dignity in the case of rheumies, This was partly created by rheumies themselves some years back when they decided it was simple to diagnose and treat so was handed back to GPs - it was admitted by one of the small group of top PMR/GCA experts in the UK who have realised that isn't the case at all, that many patients are misdiagnosed, PMR that isn't, PMR not diagnosed when it is. and that there are a lot of patients who have it for far longer than the 2 years many claim. There are a lot of rheumatological disorders and most of them have a choice of medications for management - PMR and GCA have pred. Even GCA only gets a very limited option for tocilizumab, nothing that is really effective for PMR.
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