Brain fog or loss or memory: Does anyone feel lost... - LUPUS UK


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Brain fog or loss or memory

Pipido36 profile image
45 Replies

Does anyone feel lost and cannot remember what they are doing or where they are going at times. I am getting this a lot! Thought it could be brain fog but it is getting worse by the day. Any help will be greatly appreciated. Take care x

45 Replies
melipaige profile image

You need to see a dr.. I get like that when I'm not getting enough oxygen. I had a small stroke.. sit down and control your breathing and see if it helps.. it helps me but it takes a hour if it gets bad. Your body is fighting itself. I hope you feel better soon! ! Breathe

Pipido36 profile image
Pipido36 in reply to melipaige

Hi melipage

Thanks for your reply. I guess I need to see my GP. I already had 2 strokes so am now scared! Thanks and take care

strawberryshortcake profile image
strawberryshortcake in reply to melipaige

I had something weird like that when I was about 18,years ago. I couldn't remember things and felt awful. Kept getting these strange feelings all over that I couldn't describe to the doctor. Sort of like butterflies through my body And head. They told me I had epalepsy and treated me for that. It stopped so the tablets must have worked but it was told later that I didn't gave it.

Pipido36 profile image
Pipido36 in reply to strawberryshortcake

That's exactly how I feel and it is bothering me. I will have to go and get checked. Thanks for the info it really helps!

friendly2013 profile image

I had this all summer finally was diagnosed as being in a flare. Given steroids and Methotrexate instead of Hydroxichloraquine . Still waiting for it to kick in fully. Better have yourself checked out. I couldn't get past my consultants secretary eventually saw my own my GP She Emailed him and hurray new meds. Of course Christmas can be such a stressful time it only adds to the problem.

Take care.

Pipido36 profile image
Pipido36 in reply to friendly2013

I have spoken to my Rheumy secretary who said she will call me back. I hope this gets sorted soon as I am getting scared! Thanks for the info and hope It is just a flare! Take care

daisyd profile image

Please look at the Hughes syndrome on this Healthunlocked site

Brain fog is very common in this condition, hope you get better soon, horrible isn't it

Pipido36 profile image
Pipido36 in reply to daisyd

I ll do and thanks for the info. It is quite scary. Take care

MargaretGail profile image

I have had a really bad flare this year and brain fog is a big part of it. It's been treated with steroids but it's a fine balance because the steroids can cause it too.

Pipido36 profile image
Pipido36 in reply to MargaretGail


I am on steroids and was told to increase to 30 mg for a week which was two weeks ago, so I can get better but that seems not to help. I hope it gets better if it is a flare. Yes I know steroids can cause brain fog so am not sure what outweighs what here? We cannot win can win but appreciate that steroids can balance things at times!!! thanks and take care x

ijeasike profile image

are u on steriods? it can cause loss of memory. i have that alot i can go into the kitchen to get a drink when i get there i completly forget what i came to do. talk to ur gp and consultant. take care


Pipido36 profile image
Pipido36 in reply to ijeasike

Hi, yes I am on steroids 5mg a day though have been on 30mg a day for five days last week because of the brain fog but seems not working. If I go out to the shops I completely lose focus and cannot remember where I came from or where am going hence I cannot go out on my own! It is a nightmare. I cannot make out a full sensible sentence and it has gone to the point where i forget even my children's names lol!!! Thats scary!!!

ijeasike profile image
ijeasike in reply to Pipido36

u will have to speed up things with ur dr. make small note as a reminder. u will be fine hopefully ur dr will get to d root of it. take care and God bless

Aster1 profile image
Aster1 in reply to Pipido36

Hi Pipido,

I have SLE and my only symptoms are brain fog, memory loss, facial tingling and numbness, headaches etc.. I had all of these recently and while my bloods were negative I felt awful. The worst thing for me at that time was light sensitivity. I find wearing sunglasses improves my vision and my cognitive awareness/focus. My rheumatologist told me I was fine just maybe stressed so didn't prescribe any meds. I went to my GP and she put me on a week of 40mg a day of steroids. They didn't work immediately however about a week after finishing them I began to improve. I'm not a good sleeper so I attribute a lot of my symptoms to excessive tiredness. I've done quite a bit go googling on Hughes Syndrome as my brain fog and other symptoms are very suggestive of this. I have found that the following blood tests are needed to correctly diagnose the above -:

Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

These are in my phone and armed with this info I am attending my GP tomorrow and requesting that they're done. I feel that we need to be proactive ourselves as so many symptoms can be written off or ignored.

Christmas, shopping, decorating, visiting and all the other things it involves aren't helping- only increasing all my symptoms.

I wish you a peaceful, relaxing, happy and healthy Christmas and New Year. You're not alone, so many SLE sufferers have brain fog. I think with increased stress levels (particularly at this time of year) this gets worse, but will also get better! Maybe try n get Hughes bloods done and put ur mind at ease. Happy Christmas.

Take care. X

SuePlu profile image
SuePlu in reply to Aster1

How did your bloodwork turn out Aster1??

Gillian9 profile image

Hi, I have this, my heart consultant gave me a CPAP machine and mask to wear at night. this gives you a pressured air flow which gives you more air overnight. My sleep is better and `have a less foggy brain.

Pipido36 profile image
Pipido36 in reply to Gillian9

HI Gillian9,

Thanks for the info I will talk to my Dr and find out if I need that. At this point in time I open to anything that will make me better. Thanks and take care x

Natura profile image

Pipido...I think it is brain fog. Some days worse than others. Today I went grocery shopping and came in the house without them. I was sitting down and realized I left them in the car. Ugh! Sometimes it's just habits that we are so use to doing on a daily basis, and if we change it up, it throws us off. That is probably what happened to me today. I normally don't go food shopping after I drop my daughter off at school. So, I thought I was just coming back from the school. Try to not be so hard on yourself. You might have always been like that back to childhood. Think about it. I realized it's not necessarily senility (which is a big stress factor today, Alzheimer's and such so prevalent), but how my brain was hard wired my whole life. Too much on our minds too. I am very worried about my daughter. Sometimes that is all that is on my mind. Take some time for yourself this weekend. Relax, listen to nice music, close the door or get away. I think we all do too much, and just need a break. Hope you feel better!

Pipido36 profile image
Pipido36 in reply to Natura

Hi Natura,

You made me tear, those are such wonderful words. I know we always do so much worrying and forget about ourselves. I also went to drop my son at his house yesterday, on my way back, i totally blanked and had to park the car. Tried to think of where I was and couldn't. I sat for 20 minutes and phoned my other son to come. This is getting so hard for me. Today went upstairs to get something from my bedroom but came down with nothing coz had forgotten. My kids say I need to relax of which I always do but seems not to be helping at the moment. I do appreciate your wise words and will take them aboard. Take care x

Natura profile image
Natura in reply to Pipido36

So difficult sometimes...sorry..I did get confused in the mall a couple of months ago. Walked into one store thinking it was another...again brain mapping was off. It is very scary..hope you feel better soon...

happyp profile image

This year my brain fog has been awful. I can feel utterly disorientated, I can forget my own name, where I am, what year...what decade, my is terrible and frightening. Hydroxy has helped a but I think, but I'm not like I used to be at all.

Pipido36 profile image
Pipido36 in reply to happyp

Hi Happyp,

Yes I know what you mean, and that exactly what I feel. The problem is it is getting worse by the day. At times I repeat things a thousand times and can tell that it annoys those I will be with. It is now worrying my kids as they think I am developing dementia..... in a way I think I am. Lets not lose hope there is help out there and I hope I will get better soon. Thanks and take care x

loretta1106 profile image

Have been dx with APS since "mini stroke" in March and this has happened but less now, but I was shopping a few weeks ago in a store with 2 floor. I took the escalator down to the lower level then asked to be directed to a certain item and a nice saleslady said, "Oh they're upstairs. I'll take you there" I thanked her profusely and said "Oh, I didn't realize there was an upstairs." I was so embarrassed because when I got there I realized that I was on the floor I entered on. That scared me half to death and the girl looked at me as if I was demented-soooo brain fog, directional difficulties--rarely but occasionally--but I did take a deep breath and forgave myself for feeling stupid. Anyway, it's definitely scary so go easy on yourself and talk to your MD about it. I've been on Plaquenil since late March and swear it's taken this long to stabilize me so that I don't have as many symptoms as I used to. Take care and be well.

Pipido36 profile image
Pipido36 in reply to loretta1106

Hi lorreta1106,

I can understand that and thanks for the info. I have been on plaquenil since 2002 up to now and since last year am now taking 200mg a day instead of 400mg. I get so disorianted when I am in a crowded place I end up confused and words cannot even come out of my mouth. I feel like an alien in a familiar place!! it is so scary. Thanks anyway for sharing the information and take care.

loretta1106 profile image
loretta1106 in reply to Pipido36

It's very scary. I'm switching from the Brand name Plaquenil because it's so expensive (in the USA-NYC) that in January, I'll be switching to hydroxcholoroquinine. I hope that's as effective.

yasmine profile image

I'm only 30 and this happens to me all the time! I am constantly forgetting things and its terrible as sometimes it makes me seem unreliable however I just can't help it I keep meaning to mention it to my doctor and I keep forgetting its actually really frustrating. I also constantly keep bumping into things and I'm covered in bruises :( I'm not sure if this helps?!

hope you get to the root of the problem.

Best wishes x

Pipido36 profile image
Pipido36 in reply to yasmine

Hi Yasmine

It does help, as this shows I'm not the only one as I tend to get worried a lot. I also do the same or just lose balance for no reason. Thanks for the info and hope I will get the the help I want. Take care

etc90 profile image

I replied to this as soon as I saw the opening sentence in my email - otherwise, if I left it til later, I probably would have forgotten. LOL. My point? It is one of the most prominent symptoms, not to mention prolific amongst Lupies. For someone who has prided myself on my organizational and administrative skills, the brain fog is one of the most frustrating aspects of the disease. Clarity of mind has always been my stronghold and the loss of it is devastating.

That said, over the years, I've learned some things which trigger it and when able, avoid them. Here they are: stress (good luck getting rid of that one!), uv or indoor lighting (an immediate reaction), too many choices in front of me/making quick decisions, abrupt changes in plans, emotional stress like an argument or deep sadness, physical (over)exertion, late nights and early mornings, cacophony or a multitude of voices or different sounds at the same time - like a classroom or a cafeteria (ha, ha, that one's real fun as I am a teacher).

There really is no avoiding it. It's part of our daily lives now. Eventually, you learn to live with it or how better to cope with it. I've started using labels and rituals to keep things in check and post-it notes. Not foolproof, but helpful. I've also had to lower my own expectations of what I can and cannot do. That last one goes for a lot of things I've experienced with this disease.

So cheer up! You are not ALONE! When you find your eyeglasses in the refrigerator and have no memory of it or a clue to the circumstances which might have led you to putting them there ... After you stop crying, laugh about it. I had to. I mean, come on, in the fridge? Darn, so where did I put the chop eat?

Good Luck

Pipido36 profile image
Pipido36 in reply to etc90

Hi etc90,

LOL that is me. Looking for glasses I am wearing!! Seeing laundry pegs in the fridge!! You are alone in the house so who done it Lol!! What's that! There is quite a lot and to think that I have been living with Lupus for more than 13 years now but still get alarmed by such things! Its only that at times when you feel better you tend to forget you have this illness and forget some of the symptoms let alone how they affect the daily life cos I have adapted to the daily routine and not think I have to change it more. Its only when it comes to this worrying thing that you realise that this was coming. I think of all the symptoms, brain fog is always there with Lupus. Its only getting worse that's why am worried.

Thanks for cheering me up! Take care and keep on keeping on!!!

etc90 profile image

Long story short- relax, don't do too much , keep things simple, try not to stress and avoid too much exposure to sun, uv lights/fluorescents, loud noise or demanding complex situations and stressors. Your immune system is overloaded.

Pipido36 profile image
Pipido36 in reply to etc90

Thanks, I will do just that! :-)

etc90 profile image

You, too! We have to stick together and keep each other informed or else we'd be (literally!) sick all the time. There is another chat group in US through the Lupus Foundation which was my only consolation in the first two years. Communication and knowledge is essential to our mental and physical health. I don't mean Google or medical sites

Csrdayw61 profile image

It's been happening to me a lot, but what I do now is to make a conscience effort to things like where I keep my keys, unplugging the iron, checking if my gas is turn off etc before I live my house

Whathappned profile image


My memory loss varies. I have constant name recall problems which is very embarrassing at work where I've known people for over 5 years! When I mentioned it to my rheumy she did bloods for Hughes Syndrome but I must have been ok. I'm not diagnosed with anything just a list of symptoms and slightly raised bloods but it's been enough to have hydroxy and methotrexate.

I really feel for you. I have found myself wondering what I'm doing and also where am I going but I have always known where I was at the time. You have already decided to see the rheumy. You might also see your Gp as they have a short memory test they can do that could alleviate some of the worries.

Your definite knot alone in this one my love


Pipido36 profile image
Pipido36 in reply to Whathappned

Hi Whathappned

I really appreciate the time you took to pass this information. It started like you said with name recall problems and is now going to more and more confusion and loss of memory. I even forget words mid sentence! I also have chronic anemia and Empty sella Syndrome so my GP always associates my symptoms with it though he clearly said he did not know much about it. I am hopping to get to the bottom of this.! thank you so much for the support and it is always relieving to know that I am not alone. Take care X

friendly2013 profile image

Good luck pipido,

You've been given some fabulous advice and support from this site. It's good to feel we are not alone. Thank you everyone. Hope to meet you one day Pipido at the support group.

Pipido36 profile image
Pipido36 in reply to friendly2013

Hi friendly2013

I really did get quite a lot of support and i thank everyone for the support. I hope we will meet soon and share our experiences. I am going to see my Rheumy on Tuesday, hopefully we will get to the bottom of this. Take care and Merry Xmas. Hope to meet you soon! X

friendly2013 profile image
friendly2013 in reply to Pipido36

Hi I will be thinking of you Tuesday. Hope you get some help and peace of mind to carry you over Christmas and into the new year.

Take good care xxx

Cann profile image

I find this if I over eat - and I don't mean making a pig of myself - just eating more than my poor body can digest. I think it is when I get a flare in the gut as well as elsewhere because it clears when I cut down and eat more fruit and veg and less harder-to-digest foods.

Pipido36 profile image
Pipido36 in reply to Cann

Thanks for the info Cann. I also suffer from Celiac disease so my diet is so restrictive but I love my vegetables and fruits. Am keen on fish and chicken which is better for me. I always drink loads of fluids. If i over eat I also get pain in my gut so always avoid that! Take care and keep on keeping on X

Cann profile image
Cann in reply to Pipido36

Thanks, Pipido36 - will do and you, too. X

daisyd profile image

Hi, hope you have managed to see the Hughes syndrome site here on healthunocked so you can ask your Rheumatologist if you have been tested for it,especially if I have read it right that you have had strokes in the past

meggie83 profile image

I have this problem,was worried it could be early Altzhimer!but I think its a side effect of Quinoric.

SuePlu profile image

Hi Pipido36....I just HAD to respond for 2 reasons. I know this is an older post, but am just now seeing it. I also suffer greatly from the memory loss and like many of you, it seems to be getting worse daily. I am afraid to even mention it to my docs because I am afraid they will think it's my pain meds and they will take them away. My pain clinic is VERY anal about stuff like this! It probably isn't something I should even think it worry about, but I do.

The 2nd reason is your Empty Sella Syndrome! You are the only other person I have ever met that has this! Mine was diagnosed years ago, when an MRI was done for a possible brain injury. Now, we are talking 30 some years ago. (UGH!!!) Anyway, at that time, they really weren't knowledgable in this and couldn't give me any answers, other than I was probably born with it. Have YOU ever been given any info on this?? Am really curious to hear back from you!


Pipido36 profile image
Pipido36 in reply to SuePlu

Hi SuePu

Thanks for the info and sorry for the late reply. I was not feeling very well hence could not be on here. About my Empty Sella syndrome was told could have had it when I was born as well or could be a secondary issue re to Lupus. I will be seeing the endocrinologist next week and I need answers as well so I will let you know what they say!

Keep on keeping on and I am glad to know I am not the only one coz every time I mention it people look at me in a weird way!!!

Take care and keep on keeping on! XX

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