does anyone have a problem with memory? - LUPUS UK


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does anyone have a problem with memory?

kerri_jharper profile image
10 Replies

I have no problem remembering things from when i was a child but recentlyl ive been forgetting simple words then remembering them a few minutes later. we have laugh about it at the moment as i tend to be a bit ditzy anyway but its a little bit worrying. Could this be related to lupus or perhaps something else? I also have killer migraines ut not had many recently (touch wood)

10 Replies

Yes I have a shocking memory. I have to take notes to docs with me to school meetings events everything. I find that i even am starting to forget bits of big events more and more. I have started doing memory exercises and going over things in my head to try and fix it in. I really hate the word salad stuff where it can take me several tries at a sentence and a word before its right.

I get killer migraines lasting for days. Sorry no great advice but your not alone.

bettie profile image

Yep I have a rubbish memory, when I am in mid sentance and I forget what I am saying some people try to guess at what I am trying to say others look as if I have lost the plot, very frustrating.People that I see a lot of (what was I saying) oh yes, have got used to my memory or lack of. As far as getting my words mixed up I stop tell whom I am speaking to that I have lost the power of speach should be back in a mo,after a mo speach is back, but I must say the way I have pronounced some words has been very funny. At work I carry a note pad around with me sorry not much help. I don't get headache let alone migraines,and I am very gratfull for that. Take care

WestEndGirl profile image

Yes, my memory is awful now. At work it starts about 3pm, words just drop out my head, i tell people that they shouldn't waste time asking my stuff after 5pm :) The more tired i get the worse it gets too. I keep a book with me so I can write stuff down when I remember it, especially before I see my GP or a consultant at the hospital. My family are good too, they'll sit down with me and help with my lists. I had a lot of migraines when I hit puberty but luckily not so many now, I do have arthritis in my spine though and that often hurts up into my head. My mum has Multiple Sclerosis and she has awful memory problems too, it's got so that we have a stupid code word now for when we can't remember the real word. It's just daft but it helps us laugh about it. So... you're definately not alone!

scary memory and migraines, ive fallen down the stairs because i forgot i was on them, put the tea towel in the freezer, the cornflakes in the fridge forgotten how old i was, ( though now i can remeber it might be best to forget), forget what im doing, words and lists galore but then i forget to look at the list. have set fire to many a meal and when i had a gas cooker went out leaving it unlit fortunatly didnt kill me or anyone else. dont mulitask if you can avoid it. have migranes where i lose the feeling in my face. use the reminders in my phone to go to appointments and all eletrical appliances get turned off at the wall. some of the backwards words i come out with are so funny though do have to laugh at myself and i'm still alive and in one piece!!!

have just told someone i have fairy tights instead of fairy lights he he :-)

Yols profile image

Similar to all of you above, I too have had migranes and now suffer with terrible word loss. Am forever using the wrong word or getting sentences muddled and back to front. I write lists to help me remember but then I can't remember where I have put them!!! After having an MRI I was told I have suffered numerous mini-strokes which have caused my memory lapses. Am on warfarin now to prevent any further occurences hopefully, have few migranes now I'm on the warfarin.

Least we all have a sense of humour about it, eh? :0)

45Jacks profile image

Wow, thought it was only me.....! I too suffer with muddled sentences , lost words and migraines. Gives my family great amusement sometimes :) there must be some connection between the migraines and memory . Does anyone know of any research on this?

My Nan who was the same, said once when talking about an earthquake ' it was 8.6 0n the rectum scale you know " :) bless her

Ani- profile image


There is some research linking cognition (including memory function) with inflammation and since lupus is an inflammatory condition there may well be a link here. Other brain issues such as depression, anxiety and mental fatigue are also linked to inflammation and oxidative stress in the body (oxidative stress also tends to be increased in lupus). I am currently writing a research review paper on these topics and finding many interesting links. Once I have finished I hope to share what I find here. I have found that taking some specific supplements has helped with my memory/attention issues (as mentioned in previous responses I am a registered Nutritionist BSc, MSc with a particular interest in nutrition for the brain).

irenestephen profile image


As a cerebral lupus sufferer (amongst other things) my memory is really bad as is balance. It is bad all day but especially is I am tired or upset.

It is only when you have problems like these that you realise how many times you have to say important things - name and address at doctors, telephone number. date of birth etc. I never leave the house on my own or I have to go on a route I know really well but if there is a diversion for some reason it puts me off track completely. Family bought me a phone but now have to try and remember how to use it!!!!!!!!!!!

Family and friends know but they still get frustrated as do I but I get SO annoyed when someone tries to finish the sentence for me or tries to prompt me!

When the lupus is flaired I even get to the stage of not remembering to swallow food in my mouth or even the art of swallowing - last year ended up being fed through a nose feed line for a while. It was'nt pleasant but a necessity!

I now don't eat unless there is someone with me and as my husband works shifts it can sometimes be a while till I eat - good way to loose weight but would,nt recommend it!

Although you know the reason why you do these things it still gets upsetting and frustrating. Forgetting my son's name was particularly heart breaking for me and for him :-( I now can't drive as I have forgotten how to - even after nearly thirty years of doing so - there goes my independence!

Have done everything in the past - serving tea on a tray without the plate, things turning up in weird places and even leaving the dog at the local shop!

kerri_jharper profile image

thankyou for all of the replies, I definetly dont feel alone. I hope you are all well :) x

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