Hi everyone , hope you all keeping well and safe . How does everyone cope with Lupus brain fog? I've only been diagnosed for two years now and am still learning lots about Lupus and to be honest with you brain fog is the one that frustrates me the most. I have days when I am 'all over the place' so to speak and cannot spell my name let alone type a report or presentation or put two words together - I feel like I am intoxicated and makes me feel soo embarrassed by it. It worries me so much at times in weather or not I would be able to carry on with my job when I have these type of days. How do you deal with if you happen to have brain fog? Have you noticed of any foods, drinks (alcoholic drinks?) or anything else in particular that may exacerbate this ? or anything that helps in one way or another to tamper it down?
Many thanks and take care
xx
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MadT
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Hi. The only thing I can do with brain fog is to ride it out and rest.ive learnt over the years that I am wasting my time trying to do anything when it's really bad.i just can't take anything in/deal with anything at all.dont ask me to remember names or where I've put anything...I'll most probably tell you it's in the washing machine 🙄🤦♀️.I don't drink due to medication so can't help you there .I do think it helps not to stress over it and to keep your sense of humour.
Thank you Spanielmadlady, for the advice there . I think I need to work on not stressing over it 🙄 I can tell stress and fatigue are making it worse but my sleeping is not always the best so this doesn't help either as sometimes I only get 4 hours sleep a night . Alcohol is a luxury these days for me as well but I was curious weather not having any at all does help in any way. take care xx
Insomnia is part of Lupus and I have phases where I can't sleep for toffee of wake up at silly o'clock. I'm due my b12 injection so that could be why I'm in sleep mode....2 naps a day.if you'd asked me where your sleep has gone I'd say the washing machine.....I'll try and send some sleep vibes 1st class 😴 🤗 x
You can ask for adjustments at work to accommodate your chronic illness x
Me too, always ready for a sleep!😑 was diagnosed with Lupus in 2000 since then had many related conditions, which are gradually wearing me down. Can't get any answers at The moment. Just exhausted 🤔🤔
Sorry to hear that Laraine.ive got 5 other AI illnesses as well as lupus so I know how it can get one down. For me fatigue is my symptom I suffer from the most.i really do have to listen to my body in order to function. Don't let it get you down always hear for a chat. Xx
Hi I write lists of things I need to do, or put a reminder in my phone calendar. When typing at work spell check saves the day and my colleagues help me out. One in particular I am often asking what the word is for...... As mentioned by spanielmadlady, keeping a sense of humour helps and stress and fatigue make it worse. Maybe with work you could arrange your day so the day is paced out or busier in the morning when you might have more energy? Best wishes
Hi Kath1, thank you muchly for the advice and tips shared above . I will sure put them to work in my case. Even though my energy levels are way better in the morning I find that brain fog is worse in the morning and getting better by lunchtime 🤦♀️ what a mess 🙂 take care xx
At work, thanks to Access to work assessment I have a dictaphone to record meetings so I don’t have to process everything at once. And can refer back. I also have speak to type software - I confess I haven’t used it. It was for my hands mainly but can also resolve the spelling and word retrieval
Issues.
I tend to stop writing when I lose my speech as have done some gobbledegook in my time.
It is annoying - up there with fatigue. My boss drives me mad as he will keep correcting me when I make verbal errors. I tend to confuse a word but then keep repeating g the wrong word - for his understanding he corrects me but of course I can’t correct myself. Most colleagues just nod or suggest it’s time to go home.
Hi Hamptons, I started using post it on my computer and to do list software as well as mind mapping software to be able to put down ideas, actions and things I need to sort out, even starting making template like emails to be able to refer back to them when I have one of those days, it's just my spelling has gone bonkers, thinking of the right letter to type but nevertheless typing another. 😐 I have my colleagues sometimes proofreading my emails just to make sure I'm not sending out emails which don't make sense to anyone, me included 😜 I need to work on myself into not being so stressed out about it and not thinking it's the end of the world if one day I put gravy granules in my coffee mug or put my toothbrush in the fridge 😀 stay safe xx
Also work on being kind to yourself. During one bad phase I sat my colleagues down and gave them a copy of lupus symptoms issues and explained impact. One lady kept saying I was abrupt so explained it might be I am overloaded. Explained word confusion etc. i get my admin and colleague to check my emails, letters etc. they know why and don’t mind. Can ensure I don’t send rude emails too. Regularly find strange objects in the fridge or leave my car in town. I tried to laugh it off but it is frustrating.
Technology can be our friend. If we remember to use it. 😂
Hi, it is frustrating, when I first got it I really thought I was cementing. No Consultant has ever really given advice that has acknowledged or helped in any way. As Spanielmadlady has said the very best thing is to rest. I admire you for working but you need to speak to your employer and explain the situation so that on days when you are suffering the dreaded brain fog you to do lighter duties maybe?There is no easy answer but Hydroxychloroquine did ease my fatigue. Good luck xx
Hi CecilyParsley, I noticed also that beside fatigue and stress when having a cold, brain fog also kicks in . Mental ! I built myself a pretty good career before Lupus kicked in and now I've just been promoted so hence why I'm starting to get more concerned about it. Anyway, from the valuable advice that I got from all of you lovely lupies is that we can't get away from it , there is no magical cure to it and we can only rest and patiently wait for it to 'b****er off' pardon my French. So I'll have to educate myself into doing this 🙂 take care and be safe xx
Congratulations on your promotion. It is so hard with regards work. I had a 23 year career that I loved but it was demanding and stressful and I just could not do it anymore. It broke my heart. Twelve years on and I still miss it. Good luck to you xxx
If you don't mind me asking, do you still work or not able to? My husband is thinking of giving up his well paid job due to brain fog - he just can't concentrate at work and feels he can't do his job properly any more. I'm just wondering what help there is if he took this route.
No I had to give up work. I was an Agency Manager in a Child Protection Team. It was long hours and highly stressful. I had to manage myself plus everyone else in the team, make important decisions, chair meetings, work long hours. Unfortunately I left the Local Authority three years previous. The plan was to earn enough to pay off my mortgage early and then return to the Local Authority until I retired. As an Agency Manager if I did not work I did not get paid. For the first time in my life I had to apply for benefits. It is not an easy route but your husband will be eligible for benefits such as Employment Support Allowance and Personal Independence Payments. It might be worth him requesting ill health retirement whereby he can get his pension early. Good luck it is a huge adjustment for you both xx
Thank you for your quick reply! That must have been so tough for you. I think for my husband it's been a gradual decline in his cognitive ability over time. He is awful at forgetting things/ events. Will definitely look into retirement on health grounds. I take it there's no medication that can help? Or even could it be the medication causing it? He's reluctant to try to seek help and would rather just give up I think work wise.
Hydroxychloroquine does help with the fatigue but nothing eradicates it and flares just floor you regardless what you take sadly. I transpose numbers, get dates wrong, cannot get my words out and get terribly clumsy with poorer balance so it just wasn’t feasible for me to continue to work. Maybe your husband is finding the diagnosis and symptoms debilitating. It is very overwhelming to suddenly get sick and never get back to where you were. There is a grief process and maybe he just wants to be as well as he can for as long as he can. Stress exacerbates symptoms. Personally I fought it for so long before I had to admit that I used to be someone who thrived on stress but now I am someone who cannot cope with it. I think he should look at all possibilities and then sit down with you and work out what is best for your family. It is great that you are supporting him in this it will mean so much xx
Just as the lupies say above, brain fog can at times be very debilitating and worrisome. I feel daft often, and the wrong words don't come out or I can't process the information I have, I sound like I'm intoxicated like the peeps above. It's like there's a physical vale over my head and thought processes.
My OHS know, and I think my colleagues are getting use to it, but in ED I can seem like I've completely lost it, not too much difference between me and the delirious person I may be treating. Take time, rest and fluids. Wait it out or wade through it. But always in your job be safe ultimately.
Hi LottieLou96, thank you so much for the advice and I totally understand where you're coming from with the intoxicating bit. It feels at time that I've mistaken my water bottle with the gin bottle haha 😊 I have started to record meetings via Teams to be able to refer back to these as I can't process the information at time and if feels like all of it goes over my head - It's like speaking to me in some foreign language . It's good though to be able to share it with you all and to talk about it as sometimes not everyone around may fully understand how one day I can be myself and some other days I can't remember my name so to speak . Best wishes xx
Brain fog - tell me about it 😂😂😂 I get this very often and feel very stupid when I have it - I quite often cannot think of the correct word that I want to say and it makes me very flustered and people look at me as if I’m going mad - my family have got used to it and don’t take any notice now - I haven’t found anything of use as to how to handle it so sorry can’t help you there - I don’t drink as not allowed with my medication but just wanted to let you know we do understand here on the group and yes sense of humour is a must 💕
Hello svfarmer, thank you muchly; it is very nice to know and to be able to share the 'brain fog' experience and have advice , suggestions and feedback from you all . take care xx
Hi MadT. You ask a good question. I have not considered what I do about it anymore because it seems almost like a personality trait now. Weird. It was worse when I had no diagnosis going through menopause. Doctors like to use that time zone in a woman’s life as the “well” to all of our problems. And the sad thing is brain fog can be a part of menopause. My brain fog was very bad then and hormone replacement helped a lot but nevertheless……. Sleep,Rest, accept. I’ve find certain medications
Help because they help overall with lupus:
Plaquenil and venlafaxine an antidepressant used off label for pain. Stay hydrated. Don’t make yourself do things that will only make you angry or endanger others. I can not and should not drive when my brain fog is awful. I do not work and I’m afraid I do not have suggestions on how to cope with it at work. Maybe the question
Really is: What brings on your brain fog?
What triggers it? For me stress, lack of sleep, too many peoples’expectations, too
Much sugar or too much coffee. And too much I have no clue. I hope something in here helps. Titters
Hello Titters , .....Sleep , rest , accept is what it looks like I need to work on . 🙂 Being so overly conscious about it's just chipping in my confidence at times as I always think that I may say the wrong thing or not have the right frame of mind in following a discussion thread or anything of the sort. So far I know my brain fog can be caused by tiredness/lack of sleep, stress, upset and any colds. I lead a very healthy life but unfortunately , what ever I tried over these 2 year has not stopped the brain fog happening here and there. 🙂 It looks like from the discussion thread above that it is nothing that will necessary make it go away or better or anything that can prevent it from happening so accepting this part is going to be my biggest challenge. thank you very much for your advice and suggestions above. best wishes and stay safe xx
You’re welcome. I’m glad something helped. You are right. I don’t believe there is anything to ever make it go away unless massive research were put to it🙃🧐 And as folks said above, it’s just a part of this painful pie we all eat together. I do have one suggestion to try. Antihistamines/ I used antivert/meclizine here in the States prescribed by Dr. It actually helped. You penetrated my brain fog! Lol. I don’t use much now because I also have thyroid disease. Best, Titters
Hi MadT - Like you I received my diagnosis 2 years ago and like you I find the brain fog the worst thing about it. If it were just the joint pain and other physical symptoms I'd find life a lot easier!! I'm currently working from home since Covid pandemic started and luckily there is no sign of us returning to the office until summer this year. I find that my brain fog tends to be worst in the mornings and when I feel the horrible intoxicated / dizzy and generalised brain fog feeling I find that it helps to work from bed, rather than sitting in a chair facing the laptop. I have tried lots of supplements, but to be honest, nothing has worked to alleviate it. Sometimes it is there and sometimes it isn't. I do tend to find that exercise wakes me up a bit, but I simply cannot exercise in the mornings (which are my worst time of day). Hope this helps.
Hi Ophelia1 I am the same , mornings are not good for me- brain fog wise, not always but often. I do go for a walk in the morning before work which helps. best wishes and take care xx
I note what you say about having prepared proforma / standardised emails. This made me laugh because I do this too, but the problem is that due to brain fog I sometimes forget which folders they are in etc. Sometimes, you can't win😩
Hi MadT, this is a topic of much debate on this forum! I too suffer the dreaded brain fog and it can be quite distressing, especially when it happens at work. I’m a professional (psychologist by training) and it’s profoundly embarrassing to lose myself mid-sentence when I’m running a group. I also find the admin can be quite taxing; on a good day, it usually takes me about 10min to write my clinical notes, but there are bad days when I stare at the computer screen for an hour, completely unable to bring my brain back online.
I found it got worse this week because I was sick and ended up in hospital. Being extra-sick, or extra-tired, can make it far worse. There was a moment when I was speaking with the doctors, and I stopped mid-sentence, completely unable to remember what I was saying. We all had a laugh, no harm done, but at times it can be maddening. I’m an intelligent person, capable and in my prime, unable to form complete sentences!
I’ve tried a bunch of stuff: going for a walk, looking out the window, mindfulness, breathing, resting, drinking water, having something to eat, doing grounding exercises. Nothing helps. Sometimes I listen to music which can pick up my energy a little, but really, most of the time nothing makes any difference. I usually just pick my way through the rest of the day as best I can, and let my colleagues know I am ‘a little slow today’ or ‘operating at half-speed’. It’s manageable when the brain fog hits at 3pm, I can usually drag my way through the rest of the afternoon, but when it strikes at 10am, that’s a bad day. I have occasionally been tempted to go home sick because I am non-functional. But I have terrible difficulties with taking sick leave. Mostly because I am a perfectionist. Which, I admit, may be part of the problem.
What everyone else has said here is dead right: rest, accept, breathe, ride it out as best as you can. And remember you’re not alone in this. Some days we can feel very alone, like we’re the only ones living with brain fog. But you are definitely not alone, and you don’t have to face these things alone. ☺️🌻
Hello there, I also suffered from brain fog and insomnia. I work in Finance and last two years were the worst and last year I got sick as the stress in my job was so high. I finished getting too much anxiety and panic attacks, my hands used to shake every day when I put my computer on until I had to call my GP crying and asking for depression and anxiety pills and then I got a sickness note and got off from work for 3 months. When I was off, I finally managed to sleep a lot, maybe were the anxiety pills but it was great and I just rest, slept through the day also. But as soon as I started trying to go back to work I just got sick again. I left my job and luckily found another one, also in Finance but now I work trying to do things slow, I do get still a bit of anxiety and sometimes insomnia. I stopped the anxiet pills as when I got the diagnose for lupus and HCQ my stomach couldn’t handle well the anxiety pills. But I feel ok, having change to another job helped me as it’s a new start for me. My brain still gets brain fog but I I’m coping better. I’m still in the process of training in my job so I’m taking it easy. My new employers don’t know I’ve being diagnose with lupus yet. I’ll tell later on.
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. How does everyone cope with Lupus brain fog? I've only been diagnosed for two years now and am still learning lots about Lupus and to be honest with you brain fog is the one that frustrates me the most. I have days when I am 'all over the place' so to speak and cannot spell my name let alone type a report or presentation or put two words together - I feel like I am intoxicated and makes me feel soo embarrassed by it. It worries me so much at times in weather or not I would be able to carry on with my job when I have these type of days. How do you deal with if you happen to have brain fog? Have you noticed of any foods, drinks (alcoholic drinks?) or anything else in particular that may exacerbate this ? or anything that helps in one way or another to tamper it down? 
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