Everyone not posted on here for while although I read post everyday and identify with fellow lupus suffers . Just recently I have become extremely forgetful , missing appointments losing things at home forgetting my children's names and most worrying making mistakes at work is has caused me to be hauled over the coals by my boss. I only work 15hrs a week as after diagnosis in 2015 had to leave my job working 36hrs due to lupus . Infact my whole life has changed moving home etc all to adapt living with this illness , but this new symptom has floored me and I am worried.
Does brain fog get worse over time turning into a more sinister memory condition or is it on going with minor symptoms like it is currently What do I do about work ? Any advice would be greatly appreciated.
Apologies for any typo's my brain really is fuddled these days.
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tinkslupus
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I have posted this week about my brain fog being worse and wondering if it was sun / heat induced. First time I’ve really seen a link. We were in Italy fir half term and despite covering myself well, I’m sure I’ve still paid a price. I’ve also not been sleeping well and think that doesn’t help me.
I no longer work, I felt that I wasn’t coping with my 3 children and home life well. So I finished nearly 2 years ago.
I’d be interested to see if people think this gets worse. I’ve often wondered if it’s a pre-cursor to dementia or vascular dementia etc.
Thanks Wendy , I have read your post and I think maybe your right with the link to sun . We have had glorious weather and alrgough I have had total sun block and hat / long sleeves etc I think it has some affect .
Hello, from what I’ve read I think it rarely gets worse as in it doesn’t progress to a dementia type condition but it’s still such a pain for us all though isn’t it?
Sorry you’re having difficulties at work with it. Have you explained to your boss - I bet lupus uk has a leaflet you could give to your work?
Mine seems to vary depending on how bad the lupus is and where it is attacking but it always gets better again if that’s any comfort. I’ve had some very bad times with it - not remembered about which colour of traffic lights means stop, dogs name, left the bath overflowing etc but steroids very quickly sort it out.
Are you on any treatment? I found rituximab was great for my brain.
It's not uncommon to "forget things", actually it's part of having Lupus..I deal with it daily..misplacing my keys, missing appointments..I LOVE having a calendar on my phone..it reminds me of ALL upcoming appointments and ESPECIALLY my medication list!! It eases my mind to have this available at my fingertips! Stress can/may be an issue..help from family members helps, but you have to ask and explain your situation first. My kids joked w/me at first, but realizing I needed assistance they're now on board!
Joining Wendy on this is heat & uv light can make it worse for me & probably if we discussed it bring tired from lack of good sleep & our bodies fighting ourselves. I do feel that it is a sign of my autoimmune flaring up when I can't finish sentences, find words, lose track of thoughts .. I am currently studying for exams for a qualification for my job & I do think I have at times clarity of mind in order to study. How I do taking the exams will be interesting...if the brain goes i am sunk 😵..... I hope it does come & go depending on my autoimmune diseases.... M L 😲
Thank you for your replies it's really helpful , I love this group sheds a great deal of light on living with this condition. I am on medication Hydroxcholriquin , Azothriapine and naproxen, although I have had a recent flare also so maybe that has accelerated the brain fog , I even called my daughter Jennifer, her name is Gabriella ooops it's a good job we can laugh about it . I do keep a diary on my phone but still missed appointments so I think the traditional wall calendar maybe a solution . Thanks again fellow lupies keep well
Yes I agree this group is so useful and doesn't make you feel that you're alone with lupus.I have a wall calendar and I put all appointments etc on my phone calendar too. mind you I did still forget I was going to my friends the other day oops !
Brain fog is a horrible symptom of lupus, you feel so stressed, confused and forgetful, I felt I was going mad Iwent through this a few years ago, I found it so hard to remember how to do things at work got myself in a right state and gave up work. I was on the sick for a few months, during that time I went on a mindful course which I was part of a group this really helped me. They give you advice to help you deal with stressful situations and help build up your confidence again. Here is a link which might help.
I have noticed brain fog does get worse during a flare , a couple of years ago I completely forgot my son's birthday during a bad flare something I have never done , it didn't even register when I went to his house and saw the birthday cards on the fireplace , I was thinking I wonder who's birthday it is then reading the cards I eventually realised . I am always calling people by the wrong name especially my grandchildren , they think it's funny and always correct me , i have 5 grandkids at the moment with another one due next month just to add another name to the mix , I even call them by my dog's name sometimes and I call the dog james , Harry etc she just looks at me as if I'm mental ha ha .
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