Memory and brain fog. : Hi - has anyone's memory... - PMRGCAuk

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Memory and brain fog.

Slosh profile image
80 Replies

Hi - has anyone's memory hot worse on Pred? I've noticed my memory getting worse for a while but seems to have become increasingly so since been on Pred?

Thanks

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Slosh profile image
Slosh
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80 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Absolutely! It's not called the Pred head club for nothing! Although having said that lots of drugs have a similar effect.

It will get better as you reduce/become more accustomed to the Pred. In the meanwhile you'll have to join the club of writing yourself messages, lists etc...... and then not remembering where you left them!

Take care.

Slosh profile image
Slosh in reply to DorsetLady

Hahaha - phew! Was getting increasingly worried! Thank you. Can't think of words either. Think my adult children are starting to become concerned.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Slosh

Hi again,

It's only when you don't realise you are losing it, that you need to worry! It's quite normal to forget things as you get older even if you don't have an illness.

markbenjamin57 profile image
markbenjamin57 in reply to DorsetLady

Good point DL. On that topic, er, well, actually, oh ****** I forgot what I was going to say.. ;-)

markbenjamin57 profile image
markbenjamin57 in reply to Slosh

Defo Slosh. Worry = Anxiety = Stress. Emotional Stress is known to 'narrow the consciousness', and memory is part of our conscious experience. #

Conclusion (unless there's anything else of neurological significance going on..): RELAX!!! (and tell the kids to as well) ;-)

MB :-)

Slosh profile image
Slosh in reply to markbenjamin57

Thanks

SheffieldJane profile image
SheffieldJane in reply to Slosh

I tell the family I have nominal amnesia, that tends to suit them up when I can't remember which actor was in what film etc.

Fo some reason I couldn't remember the name for a Unicorn for a while. My husband tends to understand my " you know thingy who was in wot sit with hugit

Peggy76 profile image
Peggy76 in reply to DorsetLady

Hi Dorset Lady..... so pleased to read your response about meds I've found I'm on numerous meds, but since taking oxynorm I sometimes feel befuddled ,going to try & cut down albeit I'm on a lowish dose 5mg x4 daily but with life threatening other health issues I'm on a lot of meds......keep safe & well

Peggy ❤️

markbenjamin57 profile image
markbenjamin57

Hi Slosh

I think you'll get plenty of responses to this one!

Personally, yes with both PMR and the Preds - and in conspiracy with each other. My best (I stress, amateur) explanation is because the body's mental and physical energy battery is very depleted and slow to top-up. I've read somewhere to expect to only be able to function at around 50% of levels pre-PMR, and this applies to physical and mental energy reserves.

In my experience, with PMR and the preds, Body and Mind are affected equally - and mental / cognitive 'fatigue' can lead to perceived, if not actual symptoms of inability to concentrate, short term memory, irritability, depression etc that are greater than your individual 'norm' This seems to be the pay-off for the preds managing the worst of the physical PMR symptoms - which as you probably know can be quite devastating.

That said, quite a few other things can contribute to a subjective worsening of memory for anyone, even at the best of times - stress and tiredness being just a couple. I've also read somewhere that the short-term memory and cognitive parts of the brain do deteriorate with age (like everything else!) - although for a normally healthy person, not as badly as we might believe when battling with powerful medication.

Hope this helps. Now, where is my lunch? Ahh, yes, in the wardrobe - as usual! ;-)

MB :-)

HeronNS profile image
HeronNS in reply to markbenjamin57

My keys have gone walkabout again.

markbenjamin57 profile image
markbenjamin57 in reply to HeronNS

Whistle HeronNS, and they'll come back - like a dog ;-)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to markbenjamin57

Dog? What dog?

markbenjamin57 profile image
markbenjamin57 in reply to DorsetLady

:-D :-D

HeronNS profile image
HeronNS in reply to markbenjamin57

I was thinking about trying the dowsing rods I got some time ago. :D

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

Got them sussed!

It's the shopping list left on the kitchen that winds me up! 'Spose I shall have to go digital and do it on my phone! Mind, that might raise another problem......... oh ****** life's too difficult some days.

Slosh profile image
Slosh in reply to DorsetLady

😂😂😂

HeronNS profile image
HeronNS in reply to DorsetLady

Went to a memory workshop a while ago. Taught that famous technique about using a place you know well and placing items you want to remember in the locations you've selected (and learned well). It really works. You put one grocery item on, for example, your front steps, the next item in the mirror in the hall, the next on the back of the sofa, the next on the desk, and so forth. You are supposed to make up a silly story for each item which locks it into the specific location. For example, milk pouring down the front steps, your reflection in the mirror with a bunch of broccoli on your head, eggs lined up along the back of the sofa....

But it doesn't tell me where I absentmindedly dropped my keys instead of the right place last time I used them. :(

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

I'd never get out the house when I need to do a weekly shop!

But it might be useful for other things!

HeronNS profile image
HeronNS in reply to DorsetLady

I find it helps when you are out and about and think of something, but not convenient to write it down. It does help to fix the item in the brain long enough to actually get it onto the official list.

markbenjamin57 profile image
markbenjamin57 in reply to HeronNS

I know about that memory technique Heron - if you can get your foggy brain around it in the first place!

But seriously.. (what, me?) I find that rituals / habits work well: e.g. always keeping car / house keys in a specific place at home, or always in a certain jacket pocket when I go out, helps me to avoid almost ever mislaying them. Call me a bit OCD if you like, but it works for me (PMR & steroids or not) :-). Losing important keys can be a practical nightmare!

And for lists.. why not? It's a busy Life even in Retirement (or so I hear). Nothing wrong with a good old list (or 2, or 3...?). Now, there's Shopping... Admin... Jobs on the cars...The Weekend... Lottery win... and, ah yes, mischievous ideas for my next Post here... ;-)

I think for some of us it's simply about slowing down and being a bit more methodical in everyday life - and especially important with the dreaded Brain Fog!

Happy days :-)

PMRpro profile image
PMRproAmbassador in reply to markbenjamin57

I've NEVER been able to get my head around it...

HeronNS profile image
HeronNS in reply to markbenjamin57

Mark, it was a three part workshop - three consecutive weeks which included a lot of discussion about memory and why we don't remember things and how we can improve. One week we were told about the technique (I had known about it but it always seemed like too much work) and told to create our own pathway through a favourite well known place, usually our home. We had to decide on twenty spots and learn them well, had to be things that would always be in place, like a front door, large furniture, etc. The following week through demonstration and practice we learned how to place items in sequence in our chosen spots and our homework was to use the technique during the week. It turned out to be very easy to learn and apply when taught that way, although I do forget to use it ;)

markbenjamin57 profile image
markbenjamin57 in reply to HeronNS

That's ironic HeronNS! :-D

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

See, that isn't a problem - I leave the list behind, but I can envisage writing it and will get well over 90% right. There is usually one thing I miss though...

HeronNS profile image
HeronNS in reply to PMRpro

I find walking through the store usually jogs my memory. It's things you don't buy every week that tend to escape the mind.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Like cleaning products... ;-)

markbenjamin57 profile image
markbenjamin57 in reply to PMRpro

That's natural PMRpro, even without PMR and Brain Fog.

Slosh profile image
Slosh in reply to markbenjamin57

😂😂😂 Thanks

tgca profile image
tgca in reply to markbenjamin57

Hello MB your description seems to fit steroids generally as I have GCA...."and mental / cognitive 'fatigue' can lead to perceived, if not actual symptoms of inability to concentrate, short term memory, irritability, depression"....I'm tapering at the moment and forgot this might be why I am all of the above!! Hey ho, brave are those who live with me!

markbenjamin57 profile image
markbenjamin57 in reply to tgca

Thanks tgca.

It's only my (amateur) hypothesis, but it makes sense in terms of my own experiences of PMR and the sometimes equally awful side-effects of the b****y steroids to manage the symptoms!

As you say: 'Be brave, etc' - and, most of all, keep a steady head and a SOH on the Journey of PMR / GCA. 'To laugh is to live' (Blimey, where did that come from..?!) :-/

MB :-)

tgca profile image
tgca in reply to markbenjamin57

You're the second person this week who uses the word blimey.. thought I was the only one... sign of our age?

Yes, I couldn't live without my SOH and like minded friends...

Rokerman profile image
Rokerman in reply to tgca

Have to think carefully which expletives are ok for typing! Mind you youngsters don't seem to give a **** ! 😀

Rokerman profile image
Rokerman in reply to markbenjamin57

You should worry MB - I've got the pub quiz tonight - or is it tomorrow night......?!

markbenjamin57 profile image
markbenjamin57 in reply to Rokerman

Now that IS demanding Rokerman - all those long walks to the bar and lifting of beer mugs... ;-)

Rokerman profile image
Rokerman in reply to markbenjamin57

I have to be pointed in the direction of the bar........

In an attempt to keep my diet under control (see other posts re: Statins, blood sugar level, diabetes-avoidance etc) I went along with the girls' choice of strawberry-flavoured cider until somebody pointed out that beer has less sugar...! So I've changed to a draught Peroni - that's my total alcohol for the week. Just as well - got to keep a clear err, you know - wotsit - ah yes, head! (God help us on the music round - I have to mentally sing the whole song to get to the title, never mind the artist/year)

markbenjamin57 profile image
markbenjamin57 in reply to Rokerman

Know what you mean about the alcohol Rokerman - the sugar content can vary considerably. I drink red wine but only the dry types. I'm convinced that anything more sugary can give you a worse hangover than the alcohol itself! Peroni's good stuff :-)

in reply to markbenjamin57

I read this stuff but half way through I forgot what you were talking about, just remind me will you?

P

Slosh profile image
Slosh in reply to

😂😂😂 Yes that about sums it up

in reply to Slosh

You obviously don't know MarkBenjamin57, he's a bit like "Heinz 57" if you see what I mean.

PMRpro profile image
PMRproAmbassador in reply to

We used to call dogs of uncertain parentage a Heinz 57 variety.

Not that I'm suggesting anything about Mark ;-)

markbenjamin57 profile image
markbenjamin57 in reply to PMRpro

Be very careful PMRpro. I come from a family of Championship Boxers (with a few motley Terriers in between) ;-) :-D

PMRpro profile image
PMRproAmbassador in reply to markbenjamin57

Vesti la guibbia! Dogs on stage? Is there no end to your gifts?

markbenjamin57 profile image
markbenjamin57 in reply to PMRpro

Well, I did come 17th in the Mixed Breeds category at Crufts when I was a pup. Since then I've gone to the dogs... ;-/

in reply to PMRpro

No he's a great guy. Koo, forgot what I was going to say, but anyway we're getting plenty of miles out of brain fog

PMRpro profile image
PMRproAmbassador in reply to

Maybe it isn't as far as we think - driving slower in poor visibility and all...

in reply to PMRpro

I get you. Yes come to think of it it's the same problem

markbenjamin57 profile image
markbenjamin57 in reply to

What on earth's a drain frog..?

in reply to markbenjamin57

Nice one, wife said I must get on with some work now and switch of my bloody phone. Only kidding, I just read her mind!

PMRpro profile image
PMRproAmbassador in reply to markbenjamin57

That greeny gunge that develops in the u-bend maybe???????

markbenjamin57 profile image
markbenjamin57 in reply to

Ha, Pete! :-D No idea what you mean, but I take it as a compliment all the same (he said, bowing graciously).

Was it you that got me going onto the outrageous Dick Emery character ('Mandy')? Just as a reminder: "You ARE awful, but I LIKE you" (followed by hefty shove..).

Now, enough of that. It's Friday evening and time to open a bottle of rare, 1962 Vintage Claret (not really, just a special offer Bordeaux from LIDL ;-) )

Happy Weekend all, keep smiling on the Journey

MB :-)

in reply to markbenjamin57

of course it was a compliment, your input is well received by many of us and I think it's great, as we said before "You ARE awful, but I LIKE you" shove and all.

To day has been a bad day! did some gardening yesterday because I was feeling pretty good, but boy have I felt it today. Have a good weekend.

Pete

markbenjamin57 profile image
markbenjamin57 in reply to

Thanks Pete :-)

If it's any consolation, I also did some outdoor work today. 3-4 hours cleaning the conservatory roof and pressure washing paths. Result? Feeling nicely 'cream-crackered' but at least with a sense of achievement (and having enjoyed some sunshine / fresh air).

I think the bottom-line with PMR is not to be afraid to stretch yourself a little physically - but to know your limits at the same time. It's a slow and frustrating process, especially for those of us who are mentally and physically 'programmed' to being very active.

On, and Forwards!.. :-)

in reply to markbenjamin57

Yes, I agree entirely

HeronNS profile image
HeronNS in reply to Slosh

I am really losing it. Well, losing things. What I resent most of all is the waste of time searching. It's all down, so far, to not paying attention.... 🙄

markbenjamin57 profile image
markbenjamin57 in reply to HeronNS

Good in a way, HeronNS. So maybe more about you than Brain Fog ?! Can't imagine you're 'losing it' from your very articulate and informed posts here ;-)

markbenjamin57 profile image
markbenjamin57 in reply to

:-D

polkadotcom profile image
polkadotcom

I've put bananas in the saucepan cupboard and I still can't find my T shirt - flippin' eck, I was only wearing them yesterday. Daughter's had another earthquake in NZ and she blames me for them!

markbenjamin57 profile image
markbenjamin57 in reply to polkadotcom

I let the cat out this morning - and later realised that I haven't had one for 10 years... :-/

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to markbenjamin57

Must have been the lack of sleep..... or did you forget to alter the clock?

markbenjamin57 profile image
markbenjamin57 in reply to DorsetLady

What's a clock..? :-/

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to markbenjamin57

Something you watch when you're at work... we retired ,or just tired, folk have no need for them.

markbenjamin57 profile image
markbenjamin57 in reply to DorsetLady

I hear that's why there's a clock on top of the leaning tower of Pisa in Italy. The idea is: 'there's no point in having the inclination if you haven't got the time'. :-D

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to markbenjamin57

Time's not the problem..........and I'm too much of a lady to refer the anything else! 😉

1602 profile image
1602 in reply to markbenjamin57

I keep talking to the dog, we lost her 3 or is it 4 years ago. Hey ho

Slosh profile image
Slosh

Oh goodness ok - feel better now!

markbenjamin57 profile image
markbenjamin57 in reply to Slosh

That's more like it! :-)

Slosh profile image
Slosh

Thanks everyone! 😂😂😂

markbenjamin57 profile image
markbenjamin57 in reply to Slosh

All part of the service Slosh (a bit of a giggle, that is)

Have a relaxing rest of the day :-)

Slosh profile image
Slosh in reply to markbenjamin57

Thanks you too and everyone else.

PMRpro profile image
PMRproAmbassador

On a slightly more serious note, PMR (and all autoimmune disorders can cause brain fog, in some people pred just makes it worse.

Slosh profile image
Slosh in reply to PMRpro

Yip - and I have Hashimotos. Also have had way too much stress in the past five years.

bunnymom profile image
bunnymom in reply to PMRpro

Is the 50% of cognitive ability correct? No wonder I struggle at work!

markbenjamin57 profile image
markbenjamin57 in reply to bunnymom

It's difficult to measure bunnymom, and quite subjective but there's no doubt that PMR and the steroids do give the mind and body a right old kicking.

I can only speak from my own experience but the 50% feels about right - for physical strength / energy / stamina and also brain function / mental energy. I've found that even fairly simple mental tasks which require concentration are much more tiring than previously, socialising too, and even driving for a couple of hours (which I enjoy and usually do without any effort).

Quite a few people here say that work becomes a challenge even if it's office based - and a few have had to give up work as a result of the fatigue that goes with PMR. I certainly find my group training work more demanding nowadays and feel emotionally exhausted after a day on my feet with an audience. I enjoy my work, but it takes it out of me much more than pre PMR!

I also had a 'big' birthday recently, and lots of socialising with family and friends for a couple of days. I was whacked out for a couple of days afterwards and just had a quiet time catching up with myself.

So, you're not alone!

MB :-)

bunnymom profile image
bunnymom in reply to markbenjamin57

Mark i agree totally with all the above. It's not that I feel pain so much as I just have a hard time basically functioning. I get worn out mentally and physically. Whacked out is exactly the word I use to explain to my husband. He feels that I am going downhill but actually it's that I am not getting better. That's really the issue.

markbenjamin57 profile image
markbenjamin57 in reply to bunnymom

Yes bunnymom. Some of the symptoms are difficult to pinpoint and / or describe - other than feeling simply whacked out, wiped out, deathly tired and generally awful all-over - and can be for no obvious reason (e.g. reducing preds too fast, etc). But this IS PMR at the end of the day, and the Fatigue part must be very hard to understand for those who haven't experienced anything like it :-(

I agree, when the whacked-outness is at its worst, even basic functioning becomes a battle between determination and motivation. If it helps, at times over the past 2 years (and even now, sometimes, at 6mgpd Pred), I've spent / can spend endless hours and days in a mental and physical twilight world where just getting up in the morning and pottering around at home leaves me exhausted - and no amount of sleep or rest seems to fix it. And, yes, it gets you down... inevitably.

On the positive side, if and when there's some relief from the fatigue, it feels like a miracle. It can and does happen at lower dosages of pred when the 'system' is cautiously getting back into balance - I've had a could of breaks recently and the difference is night and day :-/

All other things being ok (e.g. suitable pred taper, good diet, no other major health issues, moderate exercise, avoid stress, pacing yourself etc.) I think we just have to accept this especially nasty symptom of PMR and learn to roll with it. And, perhaps, to keep faith that 'things WILL get better...'

Fingers crossed for you, and try to keep smiling on the Journey. Roll on a nice warm, relaxing Summer (at last..) - that'll help too ;-)

MB :-)

bunnymom profile image
bunnymom in reply to markbenjamin57

Thanks mb

bigg8 profile image
bigg8

Hi Slosh,

Lol memory fog have had that since I was a lot younger I'm terrible at losing key's and alike in my hand one minute taring the house the next looking for them.

Can't say for sure if it's got any worse.😄

Slosh profile image
Slosh in reply to bigg8

Haha -,Yes used to have total recall about everything, got worse with my hypothyroid and stress but really really bad now!

Marcy47 profile image
Marcy47

RE alcohol - I was told Cava is low calorie, that's my excuse and I'm sticking to that!

PMRpro profile image
PMRproAmbassador in reply to Marcy47

I prefer prosecco (Sekt is even better but it costs more). Gin and diet tonic is zero carbs...

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