short term memory loss: I have recently been... - LUPUS UK


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short term memory loss

jani4063 profile image
22 Replies

I have recently been diagnosed with SLE, but i have noticed recently that my short term memory is dreadful, to the point were i have to write things down straight away or i will forget them, has anybody else had problems like this

22 Replies
Sue2803 profile image

This is commonly known as brain fog and is well know in people with sle. So you are not alone.


jani4063 profile image
jani4063 in reply to Sue2803

hi sue,

does it improve with meds?

Sue2803 profile image

Well mine hasnt, wish it would.

jani4063 profile image
jani4063 in reply to Sue2803

its like a rollercoaster ride every day a different wonder depression is common

Sue2803 profile image

Verycommon and it will take you a long time to get used to all the different aspects of it, but there is always someone on here to talk to. Also on facebook there is a group called Lupus is Real, started by Dawn. Brilliant site if you want a natter about how you are feeling etc. Also both are good sources for info.

jani4063 profile image
jani4063 in reply to Sue2803

thanks Sue, it really makes a difference just being able to talk with someone who knows what i am coping with


larissa profile image

This happens to me often ! not sure if its the Lupus or Fibromyalgia as it happens with both illnesses ! I tend to forget the names for things ( everyday items ) Medication hasn't made a difference to this symptom , in my case anyway , used to really upset me but got used to it now x

jani4063 profile image
jani4063 in reply to larissa

i was thinking i had dementia, so its a relief that it is probably related to the lupus, i sitting now with loads of things written on my hands and half of them i cant remember why i have written them!!!

justjan2 profile image
justjan2 in reply to larissa

I have both to so we are hit with double trouble. Poor us.

Sue2803 profile image

I am the same, I have Lupus and Hughes and never really sure which illness causes which symptom, and I agree with you, you kinda get used to it. I often laugh about it and my family know that unless I write things down there is no way I will remember. My mum is nearly 80 and her memory is better than mine.

larissa profile image

yeah , i can laugh at it now too !!!!! although sometimes frustrating but usually i am ok with it !

janiceray profile image

Join the Gang I even forget what i am saying and now my fam & Friends tend to finish what I'm saying or look at me odd.

But i also have a good laugh at myself too.

Love & Sunshine


kulie13 profile image

This is a horrible fact of life for most people with Lupus - I noticed it when I had my first major flare about 20 years ago and it has never gone away. The best thing I have been able to do is find ways around it, and not let it defeat me. I was so worried that I had dementia symptoms at first, and it made me feel so old and stupid (I had been a teacher), that I did a part-time law degree with the OU just as a kind of brain gym - it took me 6 years but it was incredibly helpful. They say 'use it or lose it' and I think that is dead right. I can't say my memory is in tip-top shape because I still have problems, but I think the more you do memory-related exercises it will help you. Learn a language, go dancing (the kind where you have to learn steps), learn a musical instrument - anything that requires memory and concentration is good. You will still have to use lists for the boring everyday stuff, but you won't feel stupid or that life is over any more and that was key for turn the corner and not feel depressed.

SLEEPINGDOG profile image
SLEEPINGDOG in reply to kulie13

When it started happening to me I thought it was related to the brain tumour they took out in 2002, which was connected to memory tissue and it's become quite a joke with my friends... "Have you got that in your diary, John?" --- "If he hasn't got it in his diary it WON'T happen for any of us".

In an effort to exercise my memory and build new cells, I've been trying to learn the composers and names of pieces of classical music. I actually became good enough to answer the occasional pub quiz question correctly, but since Lupus arrived my newly acquired expertise is gradually slipping away again. In particular I forget people I've been introduced to, so I say "I'll have forgotten your name by the end of this meeting, so I'm apologising in advance!"

kittykat68 profile image

o god yes, the thing that puzzles me is that i clearly remember things when i was 18 but not wot happened this morning lol

Lhrlovesmar profile image

Since my diagnosis w/APS, I cannot remember anything, but just short-term. I have a joke that I share with those people that "feel sorry" for me. After I'm told something I say, "I'll probably forget what you just told me, but, give me some time and I'll remember it". Because I may have deficients in short term memory, but I still can remember things that happened long ago. Jani, my advice to you is cling to those things that you find you can remember and be thankful that you are still vertical.



Natura profile image

Boy this post made me feel better. I have terrible short term memory loss down to what I did two minutes ago as well. I thought I was getting Alzheimers since that is getting very common here and I was working at the Alzheimers Disease Resource Center months ago. I purposely don't always write shopping notes down so that I can practice retrieving out of my brain. Fortunately, the grocery store is close by. Ha! And yes, my family knows this about me as well, and we all laugh about the words that come out of my mouth. We were thinking of writing a book about it called, "Schneck." That's the area between the neck and the shoulder. My mind starts saying one word and then I change my mind in mid sentence. Sometimes its hilarious. At first I felt like my daughter was constantly correcting me and it was upsetting. Now we realize what two words were going through my head at the same time. And we laugh about it. I believe in use it or lose it as well. We have something online called luminosity. I can't afford it, but I got a free trial. It's brain games. Fun...Good luck everyone!

daisyd profile image

Hi I have Hughes syndrome sometimes comes along with lupus

I am now on Warfarin, which has improved things a lot but still my neighbour who is 92 remembers things better than I do

My favourite saying is never mind it will turn up.

Char458 profile image


I've not been officially diagnosed with lupus but I also suffer with bad memory loss

Hope your memory improves soon!! :)

jegboo profile image


Swizzle14 profile image

It's the illness, my Gp has done a memory test on me a couple of times. She reads questions from the computer, I passed although sometimes when I sat round the dinner table I can't remember my children's names!

My husband has joked that he'll get me a dog tag to wear with my name and address on in case I forget where I live, it upset me at first, but know I know he is just worried about me.

I have loads of lists, forget where they are, lists and calander alerts on my phone, and a blackboard in my kitchen with days of the week on. I fill it in weekly with appointments and things to do, so then I just have to look at it. Sometimes my husband will say, don't forget the boys have the dentist Mon or you have Drs tomorrow.

Take care

Ayomi profile image

Same situation here. I also diagnosed with SLE in 2013. Now i feel my short term memory is not good. I forgot small small things very quickly. Sometimes it is so much irritating me. I want to know about possible treatments for this

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