Apart from the continual dreaded fatigue, which can lift for a short spell but not very often, does anyone find that the also dreaded head fog causes you to make bad judgments or decisions? At the time they seem very sensible, but afterwards you realise that it was not well thought through? This year I have broken numerous plates and glasses! Why? Was I not concentrating properly? I am not normally careless and the worst was recently when I was left behind from a coach trip (not a long one) because I was not waiting in the right place, and didn't see the coach!! Not see a coach? No I am not blind but was I just not thinking things through properly? I have also had major problems with my computer, and although things have been sorted out I can't help feeling that I have made impulsive judgments. I find all this quite a worry, can I blame PMR or is it old age? It is happening too often!
Head fog - Does it affect judgments?: Apart from... - PMRGCAuk
Head fog - Does it affect judgments?
Hi
Certainly some is down to PMR/Pred - I think we’ve all been through what you explain.
Reading through an article on arthritis some time ago - Brain fog is connected to most chronic auto immune illnesses.
But of course, age doesn’t help either. But if you realise you have done/ said things that are slightly out of the normal for you - I would say there’s nothing too much to worry about!
My judgement was certainly impaired at higher levels of pred. I got lost driving to a place I have been driving to for 40 years.
Well at 54 Pred made me feel razor sharp but I was anything but. My memory was shot such that I didn’t allow myself to walk away from the cooker hob lest I forget I was cooking. My spatial awareness was rubbish and I would keep knocking into things or missing things by a small amount. I now have quite a high ‘head count’ for broken kitchenware, for the first time in my life. I’m happy to report that this has got better with dose but at a lot lower than I’d like.
Hmmm - I blame PMR for all the breakages! Can't have been pred - wasn't on it!!
Thank you to all who have replied, it is slightly reassuring and hopefully it is not entirely decrepitude, but I definitely feel my judgment in many things is slightly impaired, but I only realise it afterwards! I am so exhausted anyway. As for cooking, I have several
times left the hot plate on, once overnight!!! Luckily I am still here and haven't burnt the house down - yet! At least I have something else to blame for my mishaps it's not my fault!!
Well I am a young sufferer below 50 and the brain fog affects me the same ways too.
From fumbling with buttons and not doing them right , to having to read and read again a news story or simple set of instructions, forgetting what I am talking about mid sentence, even forgetting where I should be going when the Brain Fog closes in I feel like the biggest idiot in the village.
You are trying to think and it actually feels like you are trying to find something in a head stuffed with cotton wool.
Both types of Brain Fog are horrible , from the pain and drug induced , for me , it's sometimes worse than the Fatigue , although they usually come together so brain fog is like a nasty topping on an already nasty piece of cake.
I have got in the habit of recognising the signs for both and being very careful about what I decide to do .
I count to ten before reacting to things and I have given up making spontaneous decisions or making quick remarks now .
I don't do any important jobs or paperwork or make decisions on important things when I have the Brain Fog , or I ask someone to remind of things , appointments etc. or just double check with someone that I have my facts right or I have read instructions properly.
I also take a moment when I am more alert to check my diary or writes lists of things I need to remember to do.
My to do list pad hangs on my fridge , unless I go out and I put it in my bag . The amount of times before I took a list to places I came back from a trip to town only to realise that I still hasn't picked up my prescription or had forgotten the shopping is quite ridiculous.
I also do mental exercises ( puzzles, suduko, brain training , art , even madly dot to dot!) when I am not in Fatigue or under Brain Fog as it seems to help me keep more order in my thinking even when Fog induced Confusion sets in.
Doing coordination exercises also help to stop that Brain Fog induced loss of key physical skills , touching each finger on your thumb one way then the other, touching the parts of your face with each hand in alphabetical order , unlacing and relacing shoes, moving your feet in and out in zig zags as you sit , buttoning and unbuttoning clothes in different directions . All helpful ways not to lose coordination when you are in the Fog.
Age may not help , but the getting lost in the Brain Fog can happen to us all when we are dealing with a lot of chemicals and chronic pain.
Take care , Bee xx
Thank you so very much - it almost made me laugh, but of course it is not funny at all, but so comforting to know that others are struggling too, and we all look so " normal"!!
Honestly , you need to laugh , you need to think all the silly mistakes are unimportant and will just be funny stories to tell in the future when PMR is long in the past , and you need to forgive your mistakes and not sweat the small stuff .
The key to surviving with some of your marbles left in the bag is laughter , let's face it, if we loose too many of our marbles as we go along that Brain Fog will mean we forget where we put them , or what we were looking for in the first place!
Hugs , Bee x
My brain fog came very much to light two weeks ago when I met another local HU member. We had a lovely 3 hour chat with tea and cake. I saw the new friend go in the direction of her car and then I wandered to mine, well I wandered to where, in the sainsburys car park, I could remember parking the car but some how it wasnt where I was positive I had parked it. I could see 3 immediate rows of cars and not one on them was mine. So I headed back row and started again, still no car. I was on the phone to my husband by this time asking him if he taken the car without telling me!! Not sure why he would have but I was not admitting the lost car was my fault. OH made me go back to sainsburys doors and look over the half a dozen rows of cars I could see because he was certain I would have parked where we always do when shopping and our car is a new shade of red which stands out. Needless to say once I could see all the rows I could see the damn car only 4 rows out from where i had gone to. As i am only 55 I am blaming pmr and pred head totally for the mislaid car!! You will get used to it and learn to deal with the blips!! Good luckx
Does you being as mad as a hatter have any effect on your brain fog?
The madness thankfully hides my many mistakes and mishaps , people often think it's just me acting like a good for their amusement and not the Fog addled Brain.
Goodness knows how people who were not as mad as me cope with the changes .
At least nobody thought I was normal in the first place!😋
Greetings Kathleen
If it helps: I tend to agree with others here. From experience, the Head / Brain Fog is likely to be a conspiracy of the Auto Immune illness itself (known to cause Chronic mental / physical fatigue amongst a host of other symptoms) and the side effects of Powerful medication - with possible cognitive / biochemical changes in the Brain as a result.
And, of course, the Stress associated with the above can lead to a psychological, perceptual vicious circle in causing you to believe that you are truly 'Losing the Plot' (when you aren't really)!
As others here suggest (and I agree): try to accept that these unfortunate side effects go with PMR / GCA and / or the Preds, learn to slow down a little / take things in your stride and make adjustments accordingly. PMR and GCA are Life Changing illnesses after all, and although invisible to others, can be quite devastating to our daily lives: and, perhaps more significantly, our Self Concept.
On the positive side: the dreaded DF (Deathly Fatigue) and / or the often associated Brain Fog can and do often get better / less intense as PMR ebbs in intensity and / or you reduce the Preds. I speak from experience (although a few of That Lot here might disagree)
Most of all, have faith that things will get better in the long term. 'This, too, will Pass'
Best wishes and try to keep smiling on the Journey
'Uncle' MB
Thanks!
All part of the service kathleen - even if PMRpro and I answered in the same way but different styles! Either way, hope it helps
Kathleen 18 we all do silly things with this brain fog . I went to the supermarket today and could not get the doors open to go in eventually a stroppy man said this is the exit door , feeling rather stupid I went in the correct door I wouldn't mind but I go to this store regularly and know it well ,well that's my excuse haha 🙄
Most likely to be PMR in combination with pred!!
And it will get better over time - slow down for the moment and be patient.
I think 'Slow down' is the operative word but sometimes you have to force yourself to keep going!
It's getting the balance right that is crucial! And forcing yourself to keep going is NOT the way to live well with PMR...
.. within reason? With our types of debilitating illnesses, don't fight too hard to keep up Business as Usual
I can't give up everything!!
Of course not - you don't have to! Just try to ration / pace your mental and physical energy a little if you're struggling with Brain Fade / Fog etc. Many of Us Lot here can relate!
You dont need to give up everything. I work on the basis that I have a limited amount of energy and how I spend that energy is up to me. I decided that spending time with my grandson was more important than most things so that's where a lot of my energy goes. We try and do something useful like baking which makes me feel even better for doing 2 things at once! I have always hated housework so as long as people dont write in the dust I can live with it and I try and make my husband tidy up as he goes but that is not always successful but again it's our house and as long as we are ok with it then it's hard luck to anyone else. OH is in charge of hoovering and the rare bit of ironing we have! I make and sell quilts and find sewing relaxes me and helps me top up my energy whilst still achieving things.
Basically it all comes down to doing things that mean the most to me with the limited energy I have. Its not ideal but there is absolutely no point doing things just because you always did them, that then end up making you feel worse. Once you realise its more about quality than quantity things seem clearer.xx
Absolutely agree, I had brief spell of beating myself up about slip in housework but like you realised that bigger picture matters than gleaming windows etc. Never going to win housewife superstar award and never was😂
I look at it as making adjustments with my symptoms, and historical experience/knowledge to guide me. I play ping pong with my husband instead of tennis. He plays, I sing, we slow dance more than fast. It’s chicken veg stir fry for supper, no rice or egg rolls. We still enjoy time together, just in ways that are manageable for me.
So try not to think of it as “giving up” something....you’re just adjusting and exploring ways to get on in the “new normal”
I'm only on 2-3mg now and the brain fog is still distressing me. I recognise everything that's been said. It's been 5.5 years of PMR and nearly 5 years of steroids. I am so afraid that when I come out the other side of this, I will still have it! Do we expect not to have dementia when we leave the steroids behind?
I'm sorry I'm having a 'down day' today and it all seems a bit bleak.
I wonder if this is now adrenal function catching up? I don't think I have brain fog, most of the time at least, and mine did improve once I was on pred. But I think one also needs to practise the skills - and it is too easy to not bother.
However, wiki has this - and assures us it will reverse once off pred:
en.wikipedia.org/wiki/Stero...
They also suggest medication can be considered.
Thank you for that Eileen. The article was very helpful! It's so scary knowing that your brain has slowed down and simply isn't functioning properly. The awareness is awful. I was afraid that permanent damage was being done. However, the article explained what is happening where and certainly gives hope that it will improve in the year following zero steroids. I will hope I will be one of the ones that improves almost immediately.
I blame the pred as it causes me to be exactly as you explain and was never like it before - however old age etc is creeping on so who knows....Friends aren't like it and they're older than me so I definitely blame the pred. Even on low doses it's the same.
I was told not to sign any legal documents without advice when first prescribed steroids. It doesn't seem we're making the wrong decision at the time but becomes very apparent soon after the event - I've stopped being embarrassed about it - just stay in if I feel I can't think properly. I always make a shopping list regardless of number of items.
Dreadful it is, you can't explain to anyone what it's like can you? Hope you weren't too delayed getting home after missing your coach! Don't you just feel like crying when that happens.
Oh I felt like crying and angry. Still not over it! I am on 6.5 pred but may increase to 7 as have a busy day tomorrow! And I look so well!!! You cannot explain to others. Didn't know about not signing documents, that is interesting it just proves we are not rational!
Hope you settle down soon. The dose you're on means your adrenals will be attempting to wake up - another reason for the brain fag - and no we're not rational at the moment! Just don't tell my OH!
Me too kathleen and extravagant on-line purchases for my much missed grandchildren in the middle of the night. Like a massive inflatable paddling pool because it’s rather hot in Australia. Sort of long distance hugs.
I do that even though grandson lives 5 miles away. Maybe it's not a pmr or pred thing but a nanny thing!! I imagine that i would be a lot worse if grandson was abroad.xx
...and some of my best purchases SJ have been in the middle of the night - like my Dyson hairdryer - love it to bits. Must be the quietness when no ones around!
They are the best hairdryer ever. I got the curling thing for Christmas from my OH. It takes an hour to have hair like Farrah Fawcett-Major ( electrocuted)🤣. I keep trying, because it was so generous of him. What a bore though!
I was waiting for Dyson to make straighteners - in the meantime no 3 son bought me GHD ones for Christmas and they are really good. Have seen the barrel curling tongues by Dyson - can imagine they are hard work as you say.
Tricky to work out what is Pred and what is the natural aging process. I’m slower physically but haven’t quite adapted yet so make mistakes! I am more clumsy. I live on my own and realise that my brain seems to sharpen up when around people and stimulus. We talk a lot about our physical needs but I do think we Need to feed our brains too. I can be quite zombified at times - in a gentle haze 😄
I do code-word books everyday Thelmarina and love to watch TV quizzes - it works at the time I'm doing them then the brain does it's 'don't know names' party piece. I don't worry anymore - it is what it is and if it doesn't change it will stay the same! I am alert in company but afterwards feel absolutely drained.
Take a nap when you can - we all make mistakes even when we are well - forgive yourself
Most of us know what brain fog is like - and SOME days are sure worse than others. I think the first year after my dx of GCA was the worst - my OH tells me that anyway - and it now seems a scarily retrospective 'blur'. Even though I am in a 'mini' flare at present (it is just simmering down) my memory is much improved and at the end of 2 yrs with this I feel like I am heading in the right direction - but I do regular NEED caffeine - that sharpens everything up for me at least .... and I haven't broken anything for a wee while !
I cannot tell you how your post has helped - I thought it was just me! After many months of doing weird things, forgetting stuff, doing things over and over again my ultimate sin was towards the end of last year when, wait for it , I forgot to collect the grandchildren (teenagers now) from their mothers (ex daughter-in-law who lives quite a journey away) ). Son rings. Hi mum, how are you. Fine said I. Hesitant pause from him - and how are E & M (grandchildren). Well said I, I think they're OK - why are you asking? Well, you were supposed to be picking them up this afternoon from their mothers. Oh s**t, said I. It all turned out well - everybody thought it was hysterical including grandchildren but I was, and still am, mortified. And I write everything down - my diary is HUGE.
Hi, The brain fog is real and so is the dropping things, I think it just makes things harder but still possible. I have managed to write a Doctoral thesis with brain fog, although I have my Viva in a few weeks and I know I will blank and forget words, I am making a crib pad of words I forget and will just explain why I am using it.
We have bought IKEA's cheapest crockery and it is chipped to bits, not so much because I drop things as misjudge edges and spaces.
Last year I read that Omeprazole that many of us take can cause a loss of Magnesium, although there have been no peer reviewed research. But I started taking a Magnesium supplement daily (250mg from Holland and Barrett) and I feel sure it has helped the brain fog to improve.
I have found this all very upsetting because I used to carry a complicated work diary in my head and always knew where I was going, but I have also discovered that I can still do stuff, just differently. My OH has said he hasn't noticed, he reckons I was always absent minded and clumsy!!!!!!!!!!!!!!!!!
Ikea-type stuff is chipped - the bone china we use everyday and which has been used for up to 45+ years is almost all whole! It is much tougher - cheap stuff is liable to losing bits just by looking at it.
The young are not even developing these skills. It’s all in their Smart Phones and Alexis or whatever. I talk back to my OH’s sat nav and feel that she is upset if we go another way. Just thought I’d put it out there.
Our youngest bought us the Alexa thing so we wouldn't need to turn lights on or get up from bed to turn TV off(we do have a remote I might add) but the stupid thing listened for certain words from the TV and kept randomly saying "sorry I dont understand". I kept telling it to shut up. When it decided to start talking in the early hours of the morning I told husband to sort it and told daughter I would ring her up every time it wokd me up. It will be deposited on the front lawn the next time it makes a noise!!xx
How thoughtless of the offspring - surely they should be encouraging you to get the exercise? Remember when we didn't have remote controls and you had to stand up to change channel? I have replaced that by watching recorded TV and I refuse to watch the ads - currently too much risk of seeing Jerremy Clarkson - and have dragging the dot on the timeline down to a fine art...
Agree SJ - we generations that were not 'born' attached to devices seem to have much more acuity in many areas - well I reckon that anyway. i managed my academic career 'manually' and 'held' copious info in my brain and at my fingertips as required. Perhaps I would not be as 'effective' today but think still more 'useful' than many young ones. This is not either about 'memory' and what might or not be regarded in the scheme of things as 'trivia' - but about being able to make interrelationships between things - which can only occur if certain 'ideas' are at the forefront of our thinking (sufficiently enough) to be correlated ... sorry ....blah, blah. blah, whinge etc etc ....
They also seem to be born with a flair for computers. When my grandson was 18 months old he took my IPad to some strange page I’d never seen before. When I looked unhappy he immediately took me back to where I was. Perhaps they are little aliens come to take us over? Smoochy ones!
I laughed when I saw the word 'flare' - with all the associations all of us here have with that word - as a NOT 'good thing' - anyway of course children are not actually 'born' with a flare but sucked into the zeitgeist as all humans inevitably are. I'm not against technology however - or a 'Luddite' but think that information - 'bits' of it at least is most meaningful when imaginatively and intelligently related to other significant bits. You'd think the Internet would be helpful this way - and of course it really can be - but what we 'choose', make of and do with the 'content' is still everything.
I agree totally. I love that whenever I want to do something difficult, a selfless soul has made a Youtube video on how to do it. I love that we can support each other with these diseases and share knowledge. I hate that it has become a vehicle for trolling, persecution, bullying and pornography. I use it sparingly.
Going to be picky here:
flair noun
1.
a special or instinctive aptitude or ability for doing something well.
"she had a flair for languages"
synonyms:aptitude, talent, gift, knack, instinct, natural ability, ability, capability, capacity, faculty, facility, skill, bent, feel, genius
"an activist with a flair for publicity"
2.
stylishness and originality.
"she dressed with flair"
synonyms:style, stylishness, panache, verve, dash, elan, finesse, poise, elegance, sparkle, brio;
Flare: a sudden recurrence of an inflammation or other medical condition.
"corticosteroid treatment for colitis flares" (amongst other meanings...
And.. 'Flares' (noun): style of tailoring in male / female legwear characterised by tight waist and thighs contrasted with gradually widening shape from the knee towards the hem'. I still have mine..
Quite correct of course PMRpro and that is one reason why I did not immediately see the word 'flare' as a positive thing - but then I see I also later substituted with the wrong spelling/meaning even though it often also bothers me that others do - Well I blame it on the - yes - 'brainfog' and the fact my OH has dyslexia and by the time she has finished with me on some days I am TOTALLY bemused !!! But the main thing is we usually know what 'we' mean anyway (maybe) ....🙃🙃🙃
Absolutely, I never think about being ill at all when I am with my Granddaughter, I run around without thinking and then pay for it the next day (and don't care)
I agree, I have done some strange things, I think I am more prone to let emotions rule my head. But is it getting older as well. I used to do a very full on job and made decisions all day long, now I don't, because I only do small amounts of work from home these days, I think I am out of practice in quickly summing up situations. I tend to sleep on important things if I can. At the end of the day, don't ever get upset, think about all the people in good health who do stupid stuff. look at the Government!! can't get much better at making bad decisions as they do and they get paid for it. (in my opinion)
One of the reasons I retired was I didn't trust my judgement any more and i was the boss!! I agree that decisions look so right and upon reflection...what was I thinking? I am in charge of our finances and pray everyday that I am making good choices. I also find I get mentally overwhelmed very easily. Thats my cue to quit.
I also can no longer spell correctly. Something that I used to pride myself on. Hopefully it will return.
I still work and do a complex job with PMR, however there are definitely days when I’m not ‘switched on’ and so tired. I’m beginning to accept this and try to adjust my days when this happens but it’s not always that easy, my boss doesn’t understand how it affects me.
Well I’ve just started a wonderful new job but it’s only a six month contract.I work for 12 hours a day three days a week.Im desperately trying to make a good impression as I’m hoping to be able to stay on but sometimes I get so very tired and the brain fog gets to me .There are so many new complicated things to learn.I haven’t told my colleagues about the PMR as I don’t want it to get in the way of how they see me.It does get embarrassing sometimes though when I cant seem to grasp things.
You’ve had some helpful comments.Best wishes to you.
High Dose Pred makes me an Exaggerated Version of Myself, this is not always good!......
It makes me over generous, super bright n bouncy & my thoughts flit around, when l was on Dexamethasone plus my Pred l was a Girl n a Half but once that bubble burst & the true effects of Chemo on my Brain Function became apparent it was truly awful.
It took me two years to recover from cognitive impairment but I did it & many things l had to relearn, spelling being one of them, thank goodness for google microphone!
But l also have experience of high Pred when it stopped me sleeping, it turned me into an over organised OCD Sacatuer carrying Gardener when everything was trimmed into an inch of its life BUT when l came back down to my previous dose l was always muddled & could only concentrate on one thing at a time, my decision making was not always good & l was ‘afraid’ to make any big decisions myself.........
I’m not so bad now but l try not to make snap decisions & consider things overnight, l’m turning into my Mother 🤪 actually she was very shrewd so l hope l won’t go far wrong!
My Best Advice ~ Sleep On It! And, take a picture on your phone where your suppose to pick up your coach 😉
Take Care
MrsN 🍀
Good advice!
I think doctor’s suspect we feel like you describe in your first paragraph, on Pred. It really doesn’t last and I didn’t really like it, more overwrought than useful, like you.
Oh my goodness ,yes all of the above and more ,frustrating annoying and upsetting .