Lupus Brain Fog..

[trueman]

Could you let me know what you experience/feel like when you get 'brain fog' with Lupus? I am having the most terrible few days again - only just finding out about Lupus and interested to hear how it affects you all. Thanks for your help.

[Shireenm]

Hi, I get brain fog alot. It is like when you are in a room with alot of people, you hear Them but it is as they are far away and you are fisically there but not imotionally. You cant consentrate and you can sit hours and just stare infront of you thinking of nothing. That is my experience. Sorry for my grammer and spelling I am actually Afrikaans. Be strong and thinking of you.

[trueman in reply to Shireenm]

Hi Shireenm. Thank you for replying. Yes - the bit where you said 'you hear them but it as if they are far away' sounds familiar! Also I feel like when I walk, I am moving but everything I see is far away or in slow motion. My head feels cloudy, full and heavy but empty. My balance and co-ordination is all over the place. I have had this for years off and on but have always been told it was a 'panic attack'. Maybe it is.. but when it's happening at home when I have no need to panic and along with other symptoms I am now thinking differently. How often do you experience the 'brain fog'? If you don't mind me asking..

[chrissiij]

Hello,

I have just writted a rant in the blogs section, pratly about my experience with brain fog. I forget words, or how to use simple items. I get so frustrated and angry!

Christine

[trueman in reply to chrissiij]

Thanks Christine. I will have a look!

[saranne]

Hi, I feel as if I am fighting through cottonwool, dizzy can't focus and the hours can just go by...

been like it for a week, this morning woke up and head is clear, I needed to rest, it is half term and I work in a school, its now I can really feel the difference, even hear more clearly... time to do the reports... its a hard one to describe tho. Usually just want to sleep or watch rubbish TV with subtitles cos I can't concentrate on what is being said! I liken it to feeling like being up all night after a long haul fight with a hangover.. not that I ever have of course!

[Shireenm in reply to saranne]

Spot on. This is the way I feël sometimes.

[gabs in reply to saranne]

Hi Saranne. I have just joined the group and have not yet got my head around its workings. However your comments on brain fog really struck home. I was diagnosed with SLE 13 years ago and in all that time I have never met another soul with the condition and absolutely hate it when someone asks 'what is Lupus' because it is almost impossible to explain. I know that when I wake up with brain fog I am in for a bad few days and as you say want to sleep and do nothing. I am 68 and thankfully the trip to the Memory Clinic has re-assured me that I am fine in that respect. If you are a young person I am sorry you are lumbered with this condition. As an older person I am in a position where I can pace myself as I am retired - evenso it does dictate life for both myself and my long suffering husband. Thanks. Gabs

[saranne]

Whoops..flight not a fight!!!!

[trueman]

Thank you Saranne. Does this feeling affect your movement as well? Thanks for responding. Fighting through cotton wool.. sounds about right! The dizzy thing is what gets me a lot too. Really struggling with this last couple of days.

[saranne in reply to trueman]

Yes I feel dizzy with it, if I shut my eyes I am in danger of losing my balance, my head swims. At times I feel that I turn my head but the brain inside turns after it, so its sort of catching up ! very odd

Will mention at appointment in 2 weeks, saw registrar not consultant last time and she was better at responding to concerns.

[Slowmo]

Hi,

you are not alone, for me I can be mid conversation and forget simple everyday words --- e.g. the other day after several attempts I called the kettle the 'teamaker', as although I could see the kettle and knew what I wanted to say, my mouth would not release the word. Also, words get mixed up like saying God instead of dog, my partner came home from work and I told them how naughty God had been that day, bizarre! I am able to laugh at it sometimes but others it's completely embarrassing!

I also have memory loss, this is short term and includes not remembering a conversation or event that happened earlier that day, I'm sure my kids think I'm going nuts, my partner has explained that it's lupus brain but I'm sure they think that I'm going mad!.

all the best, as with most things I'm sure it gets worse if we worry or stress over it, so take it east if you can.

Slowmo

[Loopylooby in reply to Slowmo]

This could be about me lol. I definitely get words mixed up with amusing but embarrassing consequences!! Have learned to laugh about it but can see how it makes ppl angry. I'm off for an MRI tomorrow to check that it is just lupus fog and nothing more sinister x

[trueman in reply to Loopylooby]

Thanks Slowmo and Loopylooby. Good luck with the MRI Loopylooby.

I guess I do mix up words a lot but not really thought about it too much before. I can park my car and forget where I parked it but I just assume every one does that! I can talk to people and reference them with the wrong name and not realise I am doing it. But I have always put this down to it 'just being me'... Oh and my partner never ever trusts me to remember how we got to a place... probably best really given previous experiences...

I'm glad your partner Slowmo recognises your lupus brain! As I have mentioned I may not have Lupus but am going to GP on Friday to ask to be tested. So fed up now of these symptoms. My partner thinks it's just me.. recently told me to give up caffeine as this may be causing it. So I did. Then I still experienced symptoms so he told me 'it must be because you have caffeine withdrawl' !! Can't win. Thanks for your comments - helps me to understand.

[saranne in reply to Slowmo]

I feel so bad when I forget important events in other peoples lives even a day after they tell me, a colleague was worried about a presentation and when she txt to tell me how it went I asked what she was talking about! Seems uncaring when they are so good to me, I think I will use the evidence from here to explain!

[tjperfick]

I was really glad to read this post, as it sums me up to a tee at times. I get my words so mexed up at times or really struggle to find the right words. Nice (in a way) to know other people are in the same boat.

[trueman]

Thanks everyone for responding. Seems like for a lot it is the 'muddled up' and 'forgetting' things.. For me its this 'spaced out' disorientation dizziness thing that freaks me out. Trying to muddle on through the day is hard work!

[Mandypandy1969 in reply to trueman]

I get all this stuff. Feel like you are going mad.

[luupysue]

I keep asking myself if there is anyone in there or has my brain gone on holiday, its so frustrating trying to talk to folk these days and my husband keeps finishing sentences off for me then just laughs it off. I could always talk the hind legs off a donkey, and was known for it. Now I kinda hide away as much as I can.

[tjperfick]

luupysue - I know just how you feel, somedays I just don't want to talk to anyone, even family on the phone, especially if I'm having a bad speech day. Sometimes I just have got nothing to say!

[field]

I become mentally exhausted. I can't think straight. I become forgetful and can't think of words I want to say or things I need to do. I become clumsy and I constantly make mistakes. I loose my balance and keep tripping up. If I try to write anything down, I get the letters and words the wrong way around. This is a classic one and happens so often, I put the teabag and water in a cup to make a cup of tea, walk over to the fridge, open it and think, now, what did I come over hear for? I then retrace my steps and in doing so spot the cup with water and teabag on counter and exclaim, the milk!

[Kaykay_ in reply to field]

This sounds exactly like me. I went to a doctor a few months back. He started running test to see if I have Lupus. He keeps having me come back for more test and says he isn't ready to diagnose me yet. So I've been trying to change up my diet and take plenty vitamins. It seems to be helping but out of no where this week has been worse than ever and I'm just so tired of it. I'm ready to break down and cry. I have a house full of children and no time to sit around waiting till I'm not to dizzy to stand. I'm always fear full to drive expecially with my children in the car. When it's bad like this I can forget where I'm going and miss my stop multiple times. My kids know I'm hard working and they love me so, that they have just learned their own little ways of helping me and not making a big deal out of it. I'm only 32

[Mandypandy1969 in reply to field]

Sounds familiar.

[uzi41]

I get brain fog, not sure if its the meds or the lupus will have to ask the rheumatologist next time I go. Anyway can also sit for hours not thinking or saying anything, find that I have to get people to repeat themselves. I find I end up wasting so much time and that makes me angry and frustrated with myself then the tears come. I feel like I am slurring my words, or I am staring at people but im not its almost like I am just looking through them. I think I have an odd look on my face most of the time and end up apologising fof it....take care. . Xx Uzi xx

[Mandypandy1969 in reply to uzi41]

Sounds familiar again

[uzi41]

Oh and I walk into so mang things, the bruises I get..xx Uzi xx

[jayfer]

I've just put a question on about brain fog as I ended up in hospital yesterday as I was so confused. very scary. Dr there told me to mention it at next appt for my mild lupus. reading this I feel a little better as I had never heard of fog till he mentioned it.

[daisyd]

I know this was written over 8 months ago, couldn't see anyone mention hughes syndrome (Antiphospholipid syndrome)

Maybe worth taking a look it's on health unlocked site.