What is brain fog?
‘Brain fog’ or ‘Lupus fog’ are terms that are often used by people with lupus to explain a range of cognitive difficulties such as confusion, difficulty in articulating thoughts and memory impairment. Doctors refer to this as ‘cognitive dysfunction’ or ‘cognitive impairment’.
“I thought there was something going really wrong with my brain. I was forgetting words and not able to get the right word out of my mouth. The only way I could explain the feeling, was the word ‘fog’.”
Brain fog can make once-familiar tasks such as remembering names and dates, keeping appointments or processing your thoughts more difficult. Brain fog can be frustrating and alarming for patients. Symptoms may come and go or be continuous, making school or work difficult or even impossible in extreme cases. Brain fog may be noticeably worse during flares or when fatigued.
“Other than fatigue this is possibly the most frustrating thing about lupus for me. I frequently either can’t find the word I’m looking for or (without realising) replace it with completely the wrong word.”
Unlike Alzheimer’s disease and other forms of dementia, brain fog doesn’t usually progressively worsen. As far as it is known, there are no characteristic changes in the brains of lupus patients who have been experiencing brain fog, whereas if you look at the brain of someone who died with Alzheimer’s disease, you will see lots of plaques made from amyloid proteins that built up in the brain and interfered with brain cell communication.
“Bizarrely it’s not just when I’m talking; it happens when I’m writing or typing too. Sometimes it can be the simplest word that my brain just can’t locate. “
“I feel really stupid and embarrassed sometimes.”
“I forget to take my meds, especially antibiotics, which you have to take at additional times to regular meds. I forget my mind map; I lost the ability to find my way around the small town where I grew up so I have to ask my brother how to get to places. I forget recipes I have been cooking for years. I forget to put petrol in the car…There’s just too many things to mention.”
What causes brain fog in lupus?
The cause of brain fog in lupus is not known, though it is believed that one possible cause could be circulating chemicals such as cytokines. Cytokines are hormone-like substances that promote various activities in the body, but in lupus their functions are altered.
It is also suggested that blood-flow abnormalities in the brain could play a role. This may be particularly relevant for patients with antiphospholipid (‘sticky blood’) antibodies.
There are a few other potential causes of brain fog in lupus including;
- Some medications used in the treatment of lupus (such as steroids) are known to have an effect on brain function
“My brain fog incidents seem to be brought on by increased fatigue. The effect is a similar to being rather intoxicated and usually causes my speech to become slurred. Resting for an hour or two usually helps.”
“I think stress is an important factor with lupus Flares as well as the brain fog. The day to day stress is manageable but any extra stress on top of that just tips me over the edge.”
“It is an issue if I am especially tired or stressed or if I have caught a cold or some other nasty and my immune system is trying to fight it off.”
What can I do to help manage my brain fog?
If your brain fog is caused by active lupus then treating this may result in improvements. Patients with antiphospholipid syndrome (‘sticky blood’) may improve with appropriate blood-thinning treatment.
“I think I have improved slightly with treatment. I can now enjoy reading, something I used to love but just found frustrating for a while.”
Try to keep everything in a daily planner or a mobile/tablet device so you don’t end up with notes on lots of random scraps of paper. Try to check your planner or device many times a day.
“My chemist orders prescriptions from my GP so I don’t need to worry about forgetting or that I’ll run out. I also pay bills by direct debit, which again is less worry and mind clutter.”
“I do my food shopping online. It saves me money and time, rather than going back and forth constantly for forgotten items. They remember what I ordered last time and you can add favourites. I add to the shopping basket over a few days, as and when I remember stuff. I do still forget the odd things but it’s not as much as before.”
“I have a journal, a small diary, I use my phone calendar for reminders and I use post-it notes. I also ask my husband to remind me of things. It often happens where I forget something despite my efforts to keep track.”
“I downloaded the Medisafe app to my phone. It reminds me when it’s meds time and if I’m unsure whether I’ve taken them or not I can easily check.”
“I use my fridge as a whiteboard. Plans for the day/week and things to remember get written on there with whiteboard markers. It helps me to keep on track and I know where to look if I get stuck.”
“The brain fog is usually worse when I am tired or my lupus is flaring.”
By identifying any potential triggers for your brain fog, you can attempt to plan a strategy to avoid them or limit your exposure to them. Keeping a diary of when the brain fog occurs is an excellent way to notice any potential relationship to certain activities in your daily life. LUPUS UK has a ‘Lupus Progress Diary’ to help you track your symptoms and stay organised. You can order or download one HERE.
If you keep track of particular times when you struggle with brain fog, you may be able to figure out when you are most efficient and plan your day so that the most complicated or important tasks can be completed then.
“First thing in the morning is worse; I can’t think straight. I need time to get my thoughts together to function!”
Write everything down
By getting into the habit of writing everything down, you won’t have to worry so much about forgetting something. Write down everything; appointments, birthdays, shopping lists or anything else you need to remember.
“I have sticky notes and a diary full of bullet points of day to day things. I also have a work pad full of every password and the pin to get into the staff room at work.”
Keep good lifestyle habits
Taking measures to manage your fatigue such as pacing and good sleep hygiene could help to relieve brain fog symptoms. You can learn more about managing fatigue in last month’s blog article available HERE
“When it happens I just give into it. I rest on the sofa, watch TV and let the brain rest. It does sort its self out.”
Staying physically fit and keeping to a healthy diet are both very important to good cognitive health. For some information and tips about healthy eating and exercise with lupus, please go HERE.
It is equally important to avoid nicotine, excessive caffeine, alcohol and illicit drug use.
Learn memory techniques
Learning memory techniques, such as associating a person’s name with an image or repeating the name several times in conversation may help you manage better. Here is a useful article to teach you about a few memory techniques which you can try yourself;
Keep your mind active
Playing word and number games can help to sharpen your memory. Good examples of these include crosswords or Sudoku but there are also a wide range of games available online or as apps for smartphones/tablets.
BBC Scotland has a range of free brain training games available on their website HERE.
“I keep practising quizzing. I’m still slower than I used to be but better than nothing. I follow all good quiz shows to keep my brain sharp.”
How can I explain my brain fog to others?
Family and friends
“It’s difficult for friends and family to understand why you can’t remember something they have only just told you. Some are worried about dementia and worry you are going down this route.”
Try to have an honest conversation with your family and friends about brain fog. You could explain to them that it is not dangerous or progressive and that it will probably come and go. They will need to understand that when things slip your mind, like somebody’s birthday or dinner plans, it is a symptom and not because you don’t care.
Try to encourage your loved ones to help you in remembering things. Ask them to leave you notes or send texts and emails to remind you of things rather than just telling you once.
“My calendar is shared/ linked with my husband’s phone in case I forget to look at it or forget where I put the phone or to charge it (all of which I do on a regular basis).”
LUPUS UK has a wide range of leaflets and booklets about lupus that are available free of charge. Providing copies to family and friends and discussing it with them can help them to understand the impact that lupus can have. We now also have guides written especially for carers. These can be viewed and downloaded HERE.
It may help your family or friends to read/hear about the experiences of other people with lupus. You could invite them along to a Lupus Support Group meeting or encourage them to have a look at our forum HERE.
“My family are fine with it and we treat it as a joke. I am not sure that friends really get it. I have tried to explain it but because it’s so ‘odd’ I am not sure they understand it. Some have mentioned dementia or have been dismissive saying, ‘it happens to all of us as we get older’, so I just keep quiet as it makes me angry and there is no point in getting cranky with others.”
“People finishing my sentences was the worst thing, so I told them. It was frustrating. Obviously it is to do with their anxiety and people not wanting a silence or thinking they are helping. My husband sometimes still does it; He will list several words which he thinks are appropriate, which just muddles me more, then I lose track totally”
Employers and work colleagues
Consider talking to your employer. Brain fog can be difficult to manage at work, where poor concentration or memory problems might make you appear lazy or unreliable. If your employer has an occupational health team then it may be best to speak to them and discuss some potential modest changes such as modifying working hours or allowing for a little bit of extra time on certain projects.
“I was frightened because I wrote long reports and letters to customers in my job and had 100% quality on my work. Suddenly my reports and letters didn’t make sense and my grammar was atrocious. I made gravy with milk one day instead of instant coffee and I was forgetting everyday words. Whilst I laughed I was scared as I was only mid 30’s.”
“To help myself at work I make lists and I follow a routine. I constantly use people’s names so I don’t forget them and I tend to watch their mouth a lot so I cannot struggle to understand them. They call me OCD but they always try to make sure they never interfere with how I work. I have just been moved to a new job on reception and now have a routine of writing a list of everybody who calls where it’s going to and the extension, to make my life easier.”
LUPUS UK has two guides available about lupus in the workplace. ‘I Want to Work – A self help guide for people with lupus’ provides information and advice about working with lupus, discussing your condition with your employer and colleagues and your rights in the workplace. ‘When an Employee has Lupus – An Employer’s Guide’ is aimed at employers and it explains lupus, the effects it can have on people at work and also provides information about how they can best support somebody with lupus in the workplace. Both guides are available to view and download HERE.
School and College
It is important that your school or college are aware you have lupus and the limitations the condition can present. They may not have had a pupil with lupus before, so don’t be surprised if you know more about it than them. LUPUS UK has a wide range of publications available free of charge which you can pass along to your teacher or tutor. With your permission, your nurse or doctor can write to your school/college and provide written information about lupus and how it affects you.
Schools and colleges can provide a lot of additional support to help make your studying easier. When you are not well, this may mean focusing on core subjects, a reduced workload, time to catch up or rest, and extra time for exams or coursework.
“I’ve developed my study technique as I’ve gone along. I use cue cards in a file box for my notes and lots of highlighters and pencil notes in my books. Sometimes I can concentrate for a few hours if I get engrossed, or sometimes it’s a few minutes. The Open University have been fantastic and provided me with a mentor, voice recognition and mind map software (which I also use a lot for notes and planning essays) and even a super whizzy chair to help with the aches etc. I can get extensions for assignments if I’m struggling and actually recently had to skip an assignment as I was quite ill for a couple of weeks. They’re great.”
***Please note that this article is written for informational purposes only and should not be a substitute for professional medical advice or treatment. Do not delay seeking or disregard medical advice based on information here. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. It is also advisable to consult a medical professional before making any changes to diet or starting alternative remedies, which may interact with other medications.***
Thank you so much to everybody who submitted their tips and experiences for this month’s topic. We’re sorry if we weren’t able to use your comment in the article this time.