PMRGCAuk

Worst part of PMR for me is my brain function (or not?)

I am close to 2 years on the PMR journey and the pain has diminished greatly, though still there. What I struggle with and the main cause of my retirement is my brain function. "Uncle Mark" wrote once that he felt physically and mentally he was at about 50%. His answer helped me to feel much better at the time. Then I was at 12 and now at 9 I guess I thought my brain would be feeling better just as my body is . Physically I would say I am at 60% and don't feel as weak as I did before. I am now lifting weights and exercising more. I no longer pull something everytime I try and do sometime physical. I know we are all different but does dosage cause any brain function improvement? For example, it took me 5 minutes to figure out how to post. I have no memory and carry notebooks around with me all day. I don't even try to do more than one thing at a time, which isn't necessarily a bad thing, but can also get very flustered if I have to try.

I dread my next Drs. appointment when I have to give a narrative about myself in a cohesive fashion. I don't know how you all do it and write such intelligent posts BTW! Sorting meds, vitamins, etc is very challenging.

Thanks for the rant. I know that many of you totally understand what I am talking about.

Wishing you well,

Bunnymom

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OH Bunnymom I feel your pain. It is SHOCKING how many things I forget .. now if I can't find my keys or socks or letters to mail I have to look in the freezer or the laundry. who knows. what I am doing with things!!! It IS frustrating. I am just TELLING everyone I have prednisone Brain and to bear with me! I'm taking tap and Swedish which I think helps my brain... and hoping when the prednisone is less my brain will come back!!!

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I can't tap even without brain fog. Good for you!!

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Yup I can totally relate to what you say re brain fog. I sat today filling in some forms and it was a nightmare. I needed to find some documents to enclose with the forms and my brain would not help me!! It took ages to find what I was looking for and usually I'm quite organised. I'm still organised but just had forgotten where everything was 🙄😌 Ah the joys of pred head

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Yes I am totally refining myself as I was the organized one. I am going on a trip to Mexico in the fall which involves just showing up. That is the best I can do.

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A good thing for me is that I have ALWAYS been totally disorganized...so at least this is familiar to me. I cannot imagine what organized tidy work-aholics experience on this drug. What a change in life style!!!

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😂

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Yes, I can so relate to your post! I prided myself on my cognitive skills and abilities to multi-task! After 34 years as a Project Manager, I knew some of my my strengths to be; planning and organising, problem-solving, strong analytical skills and a good eye for detail! Now? 🤣🤣🤣 Sometimes I find myself sitting here staring at the little green power button on the TV and have to question just how long I've been sitting there! Perhaps try to do something cognitive each day... I love to write (which is difficult because it's hard to stay focused) but I force myself to write each day. It's like doing mini mental weight training exercises! Embrace the change! ... or go kicking and screaming!

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I have turned in to a t v watcher because in the evening I am too tired to try and read which I love. Well for those who like to write we can make lots of lists, notes and calendars of symptoms and events. I pace out my whole week; work, laundry, shopping, appointments so I don't get overloaded on any one day. Usually it helps but not 100%.

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Oh yes...pred head leaves me.......what was I saying?

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:-D

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Hahahahahahahahahaha! Perfect!

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Hi Bunnymom, Yes it is annoyant, my memory since Pred still is there but in a far away place. Answers to questions pop up but sometimes hours or even a day later. I work in a healthfood shop, a small one, and people tell me stories and events. And the next time I see them forgot completely what it was about; whas the pain in the knee the hip or the foot; where did they go for the holiday; what was the name of the newborn grandchild. Learned Some tricks, but hate it. Hoping for better times. 🌝

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I catch myself repeating stories. I am afraid I might be coming a bore. Oh well.

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I am almost sure that is not happening, on the contrary it can be endearing. A hundred years ago😉my mother in law told the same stories over and over again and I could fill the facts in for her, but it never felt boring. S o please don’t worry, aletta

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I spend a lot of time with 82 yr old friend and we are always on repeat. It's comforting sometimes and we have a lot more past to discuss. Let's face it who wants to think about the world today. Mind you I am 56 so maybe more concerning I am on repeat😂

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Hi bunnymom,

Have sent you a link to a magazine aimed at people with arthritis specifically, but this article does cover auto immune illnesses and ‘brain fog’ , it may help, but even if it doesn’t, it confirms that you are not alone in having memory problems

portfolio.cpl.co.uk/inspire...

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Thank you. That's a very good article and very affirming. I am printing it off for my husband to see :)

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Thank you DL...a very good article. I have told my gp I am worried about my memory. He says I think about it too much? And I must carry on with my crosswords etc. It;s more than that, though. I stop mid-sentence, and, recently, have felt my mouth 'twitching' to the left. I have a diary in the lounge, and 1 in my bag. Recently, I started attending a social morning, in the next village, for people with memory problems, Alz, and carers.

We make jigsaw puzzles, play dominoes, other table games, have hot drinks and cake, and spend a good 2 hours with each other.

When I was 34, I had a nervous breakdown with depression and loss of memory. I wonder if there is any link?

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Maybe. Plus I think in today’s world we are bombarded by some much information 24/7 (sorry..I hate that expression!) that no wonder our memory sometimes goes into meltdown.

If it’s any consolation, I’ve noticed that younger people get it as well...maybe not as bad as we do...but then their brains haven’t taken in as much as ours!

I agree with your GP don’t worry about, just keep doing what you’re doing. Engaging with others, whether face to face or on here is a must!

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Hi DL,

Pleased to see you have arrived home safe and sound, you have just missed our 35 degree heat wave!!!

Pleased I read this blog, here's me thinking forgetting people's names and the like was the creep of old age, what a relief, it is only my pred!! Must read that article.

Cheers John

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Hi John,

I’m not home yet....roasting in Methven along with everyone else.

Grandson just had op on knee, so am “acting staff nurse” at moment as Mum is back to work.

All good with us, hope it is for you.

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Hi DL,

Have you ever come across anyone with Achilles’ tendon pain because of pmr? I have strained my left one, very painful and having physio, but now right one is playing up. Now wondering if there is a connection.

Hope you are keeping well yourself?

Kind regards, Sue.

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Hi Sue,

No I haven’t, but for sure people seem to suffer from myofascial pain in all sorts of places when they have PMR. PMRpro is the expert on that, but It sounds as if you’ve got things in hand with the physio. Hope is sorts things out for you.

I’m good at the moment thanks, still enjoying the NZ summer!

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Thank you. I will ask PMRpro. Glad all well with you. I would love to visit NZ.

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Hi Suedeshayes, yes I had it! I strained my tendon walking very slowly and with frequent stops up a long and not very steep hill!!! Ridiculous! and it took ages to heal even with Physio. However it does go away in the end so don't give up hope!

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Thank you for your reply. Did you increase steroid dosage or does that not help the tendon?

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How long? And did you increase steroid dosage?

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At least 6 months! and It was before I got onto the steroids, I had the symptoms but not the diagnosis then. I'm not sure if the steroids would have helped, but as they are anti inflammatory they probably would. Ask the 'Aunties' who would most likely know better than me.

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Thanks for your reply. Did you do exercises throughout your recovery? How was walking during that time? Would you be able to advise me as to how you worked through your 6 months? Thanks, Sue

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I went for Physio for the first half and she really mangled it but it did help! Physio also strapped it up and gave me exercises to do, gently at first! such as standing with toes on step and gently lowering and raising heels. (I think there were others too, but steroid brain can't recall them!) Also non weight bearing, toes up and down. For a while I used a stick or elbow crutches for longer walks outside. As the pain diminished I could discard these. I continued with the Physio until she was satisfied, although the pain had not gone entirely. I tried to walk without limping and wore a tubigrip around it, using a stick for longer outings and keeping up the exercises. The pain gradually got better until I was able to walk normally and pain free with no stick. I was quite careful not to over use it for a while even when it was better. It was just a matter of being patient and not trying to go too fast. I hope this helps!

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Thank you so much.

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Hi suedeshayes

Yes I got Achilles tendinitis in Oct 2016. I went for physio and did excersises at home. It has only just got better so hang in on there . It will get better albeit slowly.

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Hi. Thanks for that, but would you please tell me a little bit more? Just the one ankle? The best exercise you found for it? That’s about 12 weeks? Is it still a bit vulnerable? Did you manage short walks? Any other advice? You can see that I’m desperate to get back out there, but I do understand the rest and taking it easy. Just not a pleasant experience when I seemed to be managing the polymyalgia fairly symptom free!! Thank you in advance. Sue

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Hi, no it was 2016 , so over a year. The main exercise I did was to stand on tiptoe [both feet] then transfer weight to bad foot and hold for about 10 seconds. Lower feet and repeat about 5 times to start with. Also lunges with one foot against wall. I was told not to go for walks but I was naughty and used to walk through the pain. The pain used to wake me at night and I would have to get out of bed and walk around. Drove me mad. Found it better to wear shoes that were not flat. I bought some trainers with a deep heel drop. Also, ice it as much as poss. I am virtually pain free now. Good luck.

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Thank you. But a year? That’s hellish.

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I’m afraid it was. Hopefully you’ll heal quicker x

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Make yourself a crib sheet with bullet points of the main things you have to convey and then notes expanding each point if they need it. Take two copies, one for the doctor and one for you. The bullet points are imporant for doctors of lack of brain (yes, they suffer it too) and the details are imporant for their notes and the ones who "get" understanding a patient is important.

It will get better - honestly!! In the meantime, don't crucify yourself over it.

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I have started my list already. And "it will get better". That is the hope that soon my brain will follow my body. At least it doesn't shut down like it did at the beginning of all this.

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Hi Bunny,,, at 4+ years with PMR, I an beginning to regain my ability to plan, organize and follow through with tasks.

It was scarey, over the years, to recognize how much my executive function had declined. As an artist, I was unable to pursue the details necessary to start and finish projects...and the incomplete carcasses of several projects , still remain in my studio.

I found myself asking my spouse if I was losing my mind. (Horror of horrors). Fortunately she reassured me repeatedly, that my problems were PMR and Pred related, and I am getting better!

.....and...Drumroll...🥁🥁🥁. I am getting better!

So, to reassure you, your experience is shared with others, and you will get better! Through it all, I found easy crossword puzzles were pleasing to work, and helped me.

Kind regards, Jerri

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Well said Jerri ;-)

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Thank you for the encouragement. PMR is quite a journey.

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Thanks for the mention about the '50%-of-usual' energy factor, bunnymom :-)

It reminds me of when I complained to my GP that I was having problems climbing the stairs at home since I've had PMR. He then reminded me that I live in a bungalow and asked me if I know the name of our current Prime Minister in the UK. I answered: "Do you mean as at today or in 6 months' time?" ;-) :-D

But on a serious note (unusual for me, I know..), the 50% factor (+/-) is my best effort at describing how it FEELS with PMR, compared to 'Normal' - and, I guess, with GCA too - even when the physical symptoms are adequately managed with the 'magic' steroids. Throughout my PMR Journey I've been aware of having far less mental and physical energy / stamina than before. It varies, but on average, noticeably less, and still, at 2 (+/-) mgpd Preds..

I'm certain that one of the most insidious / quietly-wearing elements of these types of chronic AI illnesses is that they affect the ability of the Body and Mind's energy battery capacity to 're-charge' itself - and keep itself charged-up. My amateur 'take' on things is that, with the constant (even if relatively well-controlled by Preds) inflammation, pain / stiffness and often resulting DF (Deathly Fatigue), the entire Physiological and Psychological system is out of balance - and struggling.

My Conclusions?

1. No wonder many of Us Lot complain about often 'feeling' mentally / cognitively wiped-out with PMR and GCA despite our best efforts at the sometimes unpredictable Art of Pred tapering, adjusting Lifestyles, healthy Diet, trying to keep a PMA (Positive Mental Attitude), etc. etc. And, of course, this unresolved dilemma between the Rational and Emotional Self can bring Anxiety, Stress, Confusion, and possibly Self-doubt. In other words, we might ask: "What am I doing wrong? / what did I do to bring this on? / am I doing enough to assist in my recovery, etc" when, in reality, we might simply / still be struggling to accept that we're in the grips of a nasty and Life Changing (albeit not Life-threatening) illness after a couple of years-or-so of hoping to defiantly kick it into touch and join the elusive Club Zero. Hummppphhh :-(.

2. And, yes: despite the playing-down by some research studies around the potential side-effects and risks of taking the Preds, this is a powerful drug after all - and for some of us, a real Catch-22 when we're free from significant pain / stiffness / immobility etc: but feeling in a cognitive Twilight world as a result. Double Hummmpphhhh... :-(

3. As I've suggested before, Trying to 'Roll with it' and not over-analysing or looking for elusive answers can help, at least in part, to Cope with PMR and GCA symptoms. Not a magic solution, but a Survival Strategy maybe? As The Aunties and other experts here say, excessive Stress / Anxiety are all part of the equation of PMR symptoms - and possibly the cause too..?

As always, this comes with the Disclaimer that mine isn't a professional opinion - but I'll repeat this answer a New Post in case anyone else is interested.

Try to keep smiling on the Journey - and remember the wise words 'You are not Alone'.

Now, where's my Dinner? Ah, yes, in the wardrobe of course! :-) :-D

'Uncle' MB :-)

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Love your overall response... but the bit that REALLY resonated with me was,

"... struggling to accept that we're in the grips of a nasty and Life Changing (albeit not Life-threatening) illness after a couple of years-or-so of hoping to defiantly kick it into touch and join the elusive Club Zero."

THAT'S ME IN A NUTSHELL!

Actually I'm waiting to be told it's not PMR/GCA..... it's just a virus! : )

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I thought l had better start doing some crosswords to help with my brain fog,but oh dear l had to keep looking at some of the answers in the back of the book.....

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Think most of us have to do that sometimes! Plus it takes some time to get used to certain compilers (especially if it’s cryptic) - once you do, it gets easier! Then there’s no excuse!

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Hi Grants148 Try doing Lumosity brain training. It is fun to do and they score you. It is interesting to see how the scores drop when the PMR fog is at its worst. I started before the PMR, having been diagnosed with mild cognitive impairment! It certainly isn't mild any more!!!

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Ohhhhhhh, Thanks for the reminder!!!! I used to regularly use the puzzles and games on Lumosity to stimulate my cognitive abilities! I'm an "on-line" kind of gal, and loved that I could play the games & puzzles I enjoyed and perhaps had scored low in!

I'm back in as a subscriber and they now offer even more!!!!!

Cognitive Training

Speed

Memory

Attention

Flexibility

Problem Solving

New Skills

Language

Math

Mindfulness

>>>>>>>> www-shop.lumosity.com/app/v...

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I know the games are fun. But there is some question whether they really help cognitive ability. More effective is supposed to be getting the blood flowing through exercise, and most effective of all dancing! Dancing is exercise, plus it's social. Both these things are supposed to help our brains more than puzzles and games. I have been able to get the exercise but the social aspect is a real conundrum for me.

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I agree wholeheartedly! .... but sometimes I just don't have the energy to off the couch! I normally LOVE socialising, but I need to have energy. I am hibernating right now. So on-line games are good. ❤️

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Puzzles and games teach your brain to do puzzles and games...

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Oh yes! I totally understand as well. The first 8 months after diagnosis were a true challenge at work. But I think demanding my brain to function bc of work has improved its function. It still takes me forever to remember my students' names and I often call them the wrong name. High schoolers can be unforgiving...but chin up, shoulders back, and forward 😄 Right?

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There is also the explanation that at this age our BRAINS are full of wonderful information and useless information and OF Course we have so much to sift through to find the right answer we naturally forget things. I also have recently decided that if I forget what I'm saying in mid sentence maybe it wasn't so important anyway! The only thing to remember..and I now set the alarm for it.. is to take those pills!!! I think of this PMR journey a little like I think of traveling to a new city for a visit!! Enjoy the new sights and experiences. And eventually. going home again will be delightful

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Your post came at the perfect time, Yesterday my husband said again I answered a question stupidly either because I couldn’t hear him (I have hearing aids but can’t find them!) or just not paying attention. It was upsetting. Some days, I am just too worn out to be bothered listening, trying to figure out how I can get through the day. I play brain games on the computer, jig saw puzzles, read. Some days,my brain is tired and doesn’t want to think anymore! I tell my husband if you could spend a day in my body you’d be the same. On top of it, returning to work this week. Hang in there, yes, we understand.

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Thank you,everyone,l will try out some of the things you have suggested .

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Hi Bunnymom,

I'm glad you raised this subject because I've also been very worried about my inability to remember, think, concentrate, find things, read and manage stressful situations, so much so that I was beginning to think I have onset of vascular dementia.

Is there any possibility of a Connection between PMR and vascular or any other type of dementia? Before I was diagnosed with PMR just twelve months ago I suffered with severe neck pain and could not tip my head backwards without feeling like the blood had been cut off to my brain. But my mental faculty was uneffected and I prided myself on being organised and efficient. How much has changed!!

Good article, Dorset Lady, Thank you,

Chrissie

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If PMR tends to the other GCA end of the spectrum and certain arteries are affected so certain parts of the brain aren't getting a good oxygen supply - poor function is inevitable in the long run if it isn't treated. But it isn't a link unless those criteria are fulfilled.

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I have always wondered whether migraines and the medicine I take for them are compromising the oxygen supply to my brain, that's how it feels sometimes.

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This is interesting:

americanmigrainefoundation....

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Thank you PMRPro, it is interesting and slightly alarming in confirming my suspicions.

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