Losing my memory: Hi, I was dignosed with SLE Lupus... - LUPUS UK

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Losing my memory

Lily28 profile image
10 Replies

Hi, I was dignosed with SLE Lupus since 1989, i`m very worried, i`ve been experiencing something completely new for me, i`ve been forgeting things even where im going or where i`m,

for example i`m in the office i do my own router where i have to go that day, go to undergroung and when i`m there, just ask to myself where i`m going i got blank completely blank, i just close my eyes and tried to remember, then after few sec my brain allows me to go back in track.

That is scarry some times for few sec i forget where i live,

any advise would be great.

Thanks

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Lily28 profile image
Lily28
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10 Replies
lulu22 profile image
lulu22

it's horrible isn't it, i went in the chipshop and asked for custard with my chips last week. i find i am constantly writing notes incase i forget, even for the silliest things. xx

Lily28 profile image
Lily28

Hi Lulu, that is true, have you ever heard of brain fog, i was looking at some comments in this page an others pages related to lupus, and i`ve found fibromyalgia, which i cannot understand very well, do you know something about this.

I think losing memory could be related to brain fog??

i dont know, just guessing.

but it also said it comes and it goes

but i would like to find out more about this.

xx

Lily28 profile image
Lily28

ohh i forgot how ships with custard taste?? haha

take care

xx

Lily28 profile image
Lily28

Sorry i didnt mean to be laughing at you

i just laugh at these crazy thing we have been experince lately

sometimes we need to laugh intead of cry.

xx

Hi all

I can honestly say, I understand the frustration of memory problems completely. In recent times my cognititive function has become quite severely impaired. Things are still being investigated, but I have learned that lupus brain fog is common and some sufferers develop central nervous system involvement. The greatest challenge for me at present is waiting to find out what kind of CNS involvement I may be experiencing. Fibromyalgia can certainly cause similar problems and other things, like stroke have not totally been ruled out yet, but all indications are that it is connected with my lupus flares. (raised white blood cell count etc. that accompany symtoms, like migraines, confusion etc.) I have been very worried too by these symptoms, but I hang onto the fact that it is possible to recover and these problems are rarely life threatening now days.

Take care all.

xx

lulu22 profile image
lulu22

strangley enough, they didn't have anycustard, so i settled for curry. you have to laugh it helps lol, i have this and other faux pas i seem to be doing more of lately down to brain fog certainly, i went to the doctor and suggested to him i thought i may have fibromyalgia, my endless symtoms seemed to point in that direction after alot of toing and froing to the doctor over many years, he ran some tests, all the usual, i have been suffering from enlarged red cells for many years even though i have never been a drinker, so, he ran more tests and my ANA came back positive, so i;m currently waiting to see the rhumatologist patiently........very patiently, in the mean time, i am keeping a diary of all my daily problems, eg: brain fog, muscle pain, and twitches, cluster headaches, rash, hairloss, to name just a few.

Lily28 profile image
Lily28 in reply to lulu22

Hi Lulu22

I`ver been having almost the same symptoms, brain fog, mudcle pain, headaches, alot of rash and im losing my hair a lot. losing my appetite.

I have an appt to see the rhumatologist in May, but i dont expect a lot because this Dr is not very helpful, and i need to get the right direction abut this.

being honest i dont know what to do.

lupie-Cathy profile image
lupie-Cathy

I had to go and be tested for Alzheimers my memory was so bad that was when I was on Amitriptyline I was only on 10mgs per night! The Doc said I'd passed the test with flying colours so it wasn't that so took me off the Amitriptyline things improved but have gone down hill again slowly. It's just brain fog it seems that all autoimmune diseases cause this not sure what causes it but it's so annoying at times!

janiceray profile image
janiceray

I agree with all with a little age Age thrown in.

russell profile image
russell

It's horrible I know! But welcome to the club, I think it is part of Lupus and comes and goes. Take care x

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