Brain fog, medically known as cognitive dysfunction, refers to issues with thinking and memory that can affect people with systemic lupus erythematosus (SLE) and other forms of lupus. These cognitive problems vary in severity, but even mild symptoms can be frustrating.
Brain fog can affect your ability to concentrate and the way you process and remember information. One MyLupusTeam member expressed how brain fog causes them to frequently experience memory problems: “I have noticed my memory seems to have just gone. I’ll be asked to do something and two minutes later, I’ve completely forgotten.”
If you’ve been experiencing frequent brain fog as a symptom of your lupus, you’re not alone. This article will explain brain fog and offer five tips to help you manage this symptom and improve your overall quality of life.
Experiencing brain fog is one of the many ways that lupus can make it difficult to function in your daily life. Symptoms of brain fog differ from person to person but may include:
“How it occurs for me in different times can be things like completely forgetting a place, a conversation, or a person,” shared one member of MyLupusTeam. “I lose words in the middle of a sentence that I had already played out in my head or forget what I’m talking about in the middle of talking about it.”
One member of MyLupusTeam shared that when they’d been diagnosed with lupus five years prior, their brain fog was so severe that they had trouble functioning. “I could not read or write and lost my ability with numbers. I couldn’t even use a phone on bad days,” they said.
Even mild levels of brain fog can make it difficult for people living with lupus to function at their best. “The lupus fog is REAL,” another member stated. “It presents for me in different ways at different times — and I don’t even seem to need to be in a flare for it to rear its ugly head.”
Some people may find it difficult to do simple tasks they previously did easily — like having a conversation or doing laundry. “I left my clothes in the wash for two days before I realized I never finished them,” one member explained. “Even holding an in-depth discussion is really difficult. I lose my spot, and I can’t get it back or even find the right words,” another said.
Severe lupus brain fog can even prevent some people from doing their job. “I no longer work due to poor memory and not being efficient and effective,” a member shared. “I started forgetting all kinds of things at work and at home.”
Research suggests that multiple factors can cause brain fog in general. For people with lupus, brain fog may be related to inflammation, poor sleep or nutrition, or mental health.
Inflammation caused by lupus can affect every part of the body — including the brain. Many researchers believe that increased inflammation in the brain is a leading cause of brain fog symptoms. Inflammation of the brain caused by lupus is often referred to as “lupus cerebritis,” which can lead not just to brain fog but also to other conditions, including stroke and psychosis. It’s important to discuss your symptoms with your rheumatologist, who will determine if you need any testing.
Many people living with lupus report difficulties with sleep. According to researchers, even short-term sleep deprivation can have a negative effect on cognition, such as slowing down thinking.
Sometimes living with a chronic illness can make it difficult to eat regularly or have a balanced diet. Nutrition has been shown to play a role in cognitive function, and poor nutrition can cause cognitive impairment such as problems with memory and learning.
People who are living with lupus are at a higher risk of mental health conditions like depression and anxiety. Both of these conditions can cause symptoms of — or similar to — brain fog.
It can sometimes be difficult to manage all the symptoms of lupus, but when it comes to brain fog, you can follow some tips to help make things a little easier for yourself.
Lupus is a chronic autoimmune disease that can alternate between flares (periods when symptoms are worse) and remission (when symptoms are mild). Some people may notice that their brain fog worsens during flare-ups. “My brain fog is definitely worse when I am having a flare,” expressed one MyLupusTeam member. “I have a terrible time remembering names I know so well. It’s embarrassing!”
According to the Centers for Disease Control and Prevention (CDC), common triggers for lupus flares include things like overworking, having an illness or infection, stopping or starting certain medications, and being exposed to the sun. However, everyone’s triggers are different, so it’s important to know what yours are so that you can avoid them.
For people living with lupus or another condition that may cause memory loss, tools and memory aids are an essential part of keeping track of everyday tasks. Even something as simple as a to-do list on your smartphone or in a notebook can help. “I’ve found making a list helps so much!” shared one member of MyLupusTeam.
Another member said that writing everything down helps them immensely with the symptoms of brain fog. “I bought myself a daily planner. It has a place for daily activities, appointments, etc.,” they explained. “It has come in very handy — I take it almost everywhere I go, especially appointments.”
For a third member, calendar reminders are a regular part of managing brain fog. “I have to set a reminder in my calendar for everything,” they said. “I just use my Google calendar and then usually set reminders for a week, a day, an hour, and 15 minutes.”
Lupus can cause a wide variety of symptoms — including insomnia, a condition that’s characterized by difficulty falling asleep or staying asleep. Because lack of sleep is known to contribute to brain fog, people with lupus may notice that these symptoms are worse when they don’t get enough sleep.
“It’s at its worst when I’m tired. I have slurred speech like a drunk person and I stutter, forgetting words. It’s embarrassing,” shared one member of MyLupusTeam. Another member described a similar experience: “When I’m tired or flaring, the fog is at its worst.”
Practicing good sleep habits, such as limiting electronics and caffeine before bed or following a consistent sleep schedule, are just a few strategies to help improve your quality of sleep. However, if you have trouble sleeping well even after making changes to your bedtime habits, consider reaching out to your rheumatologist or a sleep specialist for help.
Exercise can have a positive impact on brain fog symptoms in many ways. Not only has exercise been linked to improvements in memory and information processing, but it can also help reduce inflammation, improve sleep quality, and help manage overall lupus symptoms.
In addition to moving your body in whatever way feels comfortable for you, it’s important to take time for relaxation and mindfulness. Mindfulness is often a natural part of many relaxing activities, like reading, listening to music, or creating art, but it can also be as simple as taking a moment to breathe and focus before moving on with your day.
Brain fog can make it difficult to function at your best and, for some people living with lupus, it may have a significant impact on the way they interact with those around them. “I know my kids and husband get frustrated with my memory and having to ask them questions over and over,” expressed one member of MyLupusTeam.
One of the most important aspects of living with a chronic illness like lupus is finding the space to be gentle and compassionate with yourself — whatever that might look like for you. “Patience is the best thing I do — patience for myself and asking my circle to be patient with me,” said one member. “If I can grant myself grace and forgiveness, I get back to ‘myself’ much more quickly,” added another.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 218,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.
Do you have symptoms of brain fog because of lupus? Have you taken any steps to help sharpen your memory and thinking processes? Share your experience in the comments below, or start a conversation by posting on your Activities page.