Memory issues ??

[Weemillie]

Hi 👋 I havnt posted in a while ,however I have had long standing JCA/RA among the rest that goes with it like MCTD .

So after years of intense treatment from the age of 11 . I now find myself at the age of 60 with memory issues. To start it was around a year ago ,my gp thought I'd had a stroke as I had a droopy face to one side eye drooped and it turned out I had a Mini Stroke . I was then told I had a muscle imbalance in my right eye 👁.

Then I went back to my gp some weeks later to tell her that I thought I was forgetting things mislay things speak and words come out wrong. So since then it's been much the same however in my favour I have seen a Neurologist/Centre for people with early signs of Dementia ect.

Now my results look like this ....

I have had to cut down on painkillers/night time tablets let's say any of them that can affect memory, but what I don't get is why Meveberine ?? There for IBS and I have never had an issue with them before .

I get the fact of being on long term opioids can affect lots of things . But !!!! Why now I'm 60 years of age and I have changed in a year ,my personality was always positive have a laugh at my expense, enjoy my grandkids live life as I have already been through so much in my 60years . I should write a book 📖 🤔, I what I'm getting at it has anyone been affected in this way with any of there meds . Also I'm on Entercept/Benipali for the RA . I wonder do they really study these things ?? I got 66-100 on my Memory test ,and it was mainly by brain wasn't reacting quick enough.

Anyway sorry for the big long story just to ask if anyone else has these issues . They are continuing to monitor me till I'm 65 why ?? Well I don't know that answer either .

Thank you if you read this . Take care everyone we all deal with things differently from one another. ✨️

[Runrig01]

I do have memory issues, but mine is the result of a severe stroke when I was 52. I’m now 58. I use butec patches, which is an opioid as well as Tramadol as required, and amitriptyline at night. I can’t say my memory is any worse from taking these, although I was on all of them with the exception of the patch, before my stroke. I rely on apps to prompt me to take my meds, reminder app so I don’t miss appointments or important tasks to do. I also have a To do list that I have to regularly check, and yet to hinge still get missed, meds get forgotten. I’ve accepted it, as I was fortunate to respond to thrombolysis, and recovered well physically. They had wanted to fly me to Kings to have surgery to remove the clot, but no beds were available, and the thrombolysis came with risk of haemorrhage, but thankfully worked well for me.

I can watch something on TV, yet 30 mins after watching struggle to recall the story or name the actors. I sometimes watch something on the streaming channels, then can’t recall which channel or what the program was called. Things could be worse and on the whole I get by. Hope you find answers soon 🤗

[Weemillie in reply to Runrig01]

Thank you for your reply. And I'm glad things got better for you stroke wise .It more days/dates/numbers I get confused with and I have to ask my husband .

However I feel he's having the patience of a Saint at the moment. It just gets to me when I'm Not who I was Me the fun loving Lorraine that loves a challenge, doing stuff others can't I feel blessed. But I can't seam to get that Lorraine back . I'm misplaced I feel does that make sense to you ?? . I don't think that reducing my meds are the answer however I have to go with that for now .

But I always say "you know your own body fact" . I also feel my confidence is taking a hit ,as I'm not as confident as I once was . But onwards & upwards I have to hope it changes and I return to beign me again some day 🙏 xx

[Runrig01 in reply to Weemillie]

I completely get it. My personality changed after the stroke, not something I planned on doing, it just happened. My stroke consultant said it is very common to find your personality changes. I had to take ill health retirement after the stroke, which isolated me from some of my friends, as they all live in Margate and Ramsgate, and I travelled to them, or stayed up there after work. With all the will in the world, it becomes a struggle keeping in touch when they all still work full time, and just want to collapse when their shifts done, and I live 20 mile away. I never used to mind night time driving, but since the stroke have struggled to keep eyes focused at night.

[Gnarli in reply to Weemillie]

Yup. I miss me too

[AgedCrone]

Well WM all I can say is if you can put a letter together like that your memory can’t be that awful . Everyone’s memory starts to go, some goes sooner than others. You know your memory is going a bit and you admit it I think that says a lot, I think the people who need to worry are ones who are all over the place but don’t realise it.

You say you had a mini stroke ….that could have affected all different types of brain function….but you remember that & you have recovered from it. Being monitored until you are 65 is surely a good thing.?

The only drug that had a really nasty effect on me was amitriptyline that didn’t suit me at all, I also came off opiate patches for the same reason….now I take as few prescription meds as possible. Luckily I am on infusions, so they just do their work. ..& after 6 years don,t seem to have any nasty side effects. I am prescribed painkillers, but if I haven’t got pain I don’t take them.

So please don’t fret about all this stuff….try to enjoy your grandchildren. Enjoy your life…….& if you feel any particular drug is affecting your memory, speak to your doctors about it….you sound as if you have a good medical team taking care of you ….so trust them & forge ahead with confidence.

[Weemillie in reply to AgedCrone]

You are so right thanks for your reply. Take care u am fortunate to have a good health team working with me. X

[AgedCrone in reply to Weemillie]

Keep in touch on here..I’m sure a lot of us here forget things all the time do remember 🤔let us know how you’re getting on.

[welsh12 in reply to Weemillie]

Your comments about your fun loving self often life events get in the way and has we get older we can get more serious. As aged Crone says you put a good post together expressing and showing insight. The more you worry about your memory the more it can affect you my memory . My memory is not as good but then my daughter In her 20s has a memory similar to mine she can be more forgetful.

[moon10008]

Hi, I am 50 l, RA diagnosis March 2021, Mtx 25mg and Benepali....whilst the latter been a life changer I have memory issues/brain fog...unsure if RA/meds related or maybe perimenopause?

It's very frustrating...however I have done much better by relieving some of the stress of it.

I have dry wipe boards and pens in my art studio and kitchen. Trained myself to write anything down that I may need to do....then a studio journal (I was forgetting how I mixed a colour etc).

Whilst it's not perfect, it's helping, removes some of the stress and I I have a better memory than my Google nest 😝....I have been much happier since making these adjustments.

I hope you find a way to take some of the stress of this out, I think it makes it worse....

😊

[Evie3]

Hi….have been on meds for 42 years and for the last two years I struggle for words…names and numbers are worse….it is embarrassing. Have been to the Dr three times over the last few years and had the memory test, but wasnt bad enough to be referred. 😵‍💫

[Weemillie in reply to Evie3]

I'm saddened to hear that ,as ppl whom have been in meds long term will suffer in some way I did always get told ,that you can become dependent on drugs you think are helping . But what else is the answer?? Iv been there and did it ,can't take a massage as my joints between my clavicle & lungs/breasts are so tender I suffer giving my kids hugs . But I did say not 2 of us are the same but it has been good to hear from others & there thoughts so thanks again . I'm now on word search books ,it can only help ?? Take care xx

[Evie3 in reply to Weemillie]

Worth trying! Lol

[WilfDog]

I'm sorry to hear of your struggles. I've had sJIA since the age of 5 and unfortunately contracted Reyes Syndrome when I was 7. The encephalitis has caused me to have memory issues ever since. Retaining information has always been difficult and processing it can be slow. I've never been able to tolerate opioids amd so have had to resort to alternative meds. I've been on steroids most of my life and take etanercept too. I've since contracted Ankylosing Spondylitis a couple of years ago which wasn't picked up initially.

As well as the meds, exercises and movement are my go to treatment along with potent supplements and essential oils, which I started in 2017. They have helped hugely with sleep, inflammation and infections.

Funnily enough, I am writing a book, a memoir and self-help guide to hopefully assist others living with chronic pain.

You have a lot going on. Don't apologise for your long story. People are interested and get your struggles, albeit not everyone has had a stroke, including me. It must be difficult to deal with. I'm glad you are under a neurologist and hope you find some treatment to relieve your symptoms. Sending much love x

[Weemillie in reply to WilfDog]

Thank you for your reply 🙏 and I hope your pain free at the moment. The thing is when your the youngest in the clinic (at the time) you don't know what life has ahead of you . So when my parents along with Professor that looked after me started to tell me what might and might not happen 🙃 I was young it went in one ear and out the other . I was loved up with my now hubby of nearly 35 years I'm sure no good with numbers, but he was with me and still does remind me of what the proff told me back then . But hey I guess like that you never look ahead or back . You just pray the worst dosnt happen . I was fortunate with lots of help from health team to go on and have 2 lovely boys and now have 4 grandchildren. They keep me going ,the oldest is 11 and his dad explained to him why he coudnt jump on me or have hard cuddles ect . But he understands it all now and will help me in any way in the house ,its a blessing we all have our own lives . But I ALWAYS rember myself there's lots of ppl out there so much worse than ME .

And I too was intending doing my own forum after getting my medical records sent 🙃 wow this would paper every wall in the house 7 doubled packs full since the of 4 till I was 58. I just need to know where to start there's so many issues JCA/RA and MCTD where do you start apart from the beginning haha . Hey thanks for listening sorry to go on . Take care xx

[WilfDog in reply to Weemillie]

Aww... Enjoy your lovely grandchildren. They are a blessing. Our life path is unknown. We just have to make the best of what we've got. Take care xx