Lupus and Brain Fog
An estimated 80% of individuals with lupus will experience brain fog. Learning what may contribute to brain fog and how to manage it can improve day-to-day quality of life.
- Characteristics of Lupus Brain Fog
- What Causes Lupus Brain Fog?
- Testing Cognitive Function
- Managing Lupus Brain Fog
- Impact of Lupus Brain Fog on Quality of Life
- In Conclusion
It is not unusual for an Individual with systemic lupus erythematosus (SLE) to complain of feeling like they cannot concentrate, to be easily confused, and have problems with memory. These symptoms – and others that will be identified throughout this article – are collectively known as lupus brain fog. Researchers Hanan Al Rayes, et al. acknowledge that the “relative risk for [cognitive dysfunction] in SLE [is] greater when compared to [rheumatoid arthritis] and to healthy individuals.” Living with this kind of cognitive dysfunction can make accomplishing even the most basic of day-to-day tasks extremely difficult, which can be frustrating and even scary at times.
Developing greater self-awareness about how an individual is affected by brain fog, being able to pin-point when the fog sets in, when it lifts and about an individual’s health at the time they are experiencing the fog may give greater insight into the mechanisms at work. This knowledge may in turn help an individual work successfully with healthcare practitioners in order to develop better coping and management strategies when navigating through the fog.
Characteristics of Lupus Brain Fog
According to Dr. Howard Smith of the Cleveland Clinic and practitioners at the Hospital for Special Surgery in New York, the following are examples of how brain fog may present in an individual with lupus:
- Memory problems including remembering small details
- Fatigue and sleepiness
- Rushed speech
- Difficulties with movement
- Problems doing daily tasks because of impairment
Al Rayes and others acknowledge that there is no specific profile of cognitive dysfunction among individuals with SLE – each experiences brain fog as uniquely as they experience the SLE itself. There are some specific areas, however, that seem to be the most negatively impacted including working memory, attention, planning and multitasking.
Rheumatologist Meggan Mackay also acknowledges the fact that cognitive dysfunction can be hard to define and may not be reported accurately because practitioners may use different and sometimes unreliable methods for assessing brain impairment. Symptoms can also be very subtle, can wax and wane, and because of this, an individual may just ignore and accept how they are feeling as their “normal.” Individuals with SLE may also fail to report or discuss behavioral changes with their healthcare practitioner especially since the fog cannot necessarily be attributed to any one thing. Mackay points out, however, that no matter what the reason, these symptoms need to be recognized, discussed and treated. An individual deserves to feel their best.
Some individuals with SLE can be classified as having neuropsychiatric lupus (NPSLE). When an individual has NPSLE, they suffer from one or more neuropsychiatric symptoms. Fabrizio Conti and his team identify these characteristics as neurological manifestations (pain and sensory issues), psychological manifestations (changes in mood such as depression or anxiety) and cognitive impairment. In 1999, the American College of Rheumatology (ACR) developed a more definitive nomenclature for defining NPSLE. The ACR included 19 neuropsychiatric symptoms. While not an exhaustive list, symptoms include:
- Anxiety disorder
- Cerebrovascular disease
- Seizure disorder
- Severe confusion
- Mood disorders
- Autonomic disorder
It is important to note that not all individuals with SLE and brain fog have NPSLE, though according to a 2015 review published in the journal BMC Medicine, up to 56% of the over 2,000 individuals with SLE studied showed NPSLE manifestations. Distinguishing between the two is imperative for individuals with lupus to be able to openly discuss how they feel with their healthcare practitioner in order to be properly diagnosed and treated.
What Causes Lupus Brain Fog?
Researchers are working hard to determine what exactly is responsible for lupus brain fog. Lupus UK notes that stress, mood disorders, fatigue and even fibromyalgia may be to blame.
The use of corticosteroids may contribute to cognitive impairment, but that idea is somewhat controversial. Mary Ellen Lynall of Cambridge University does note, however, that corticosteroids have been associated with depression, panic disorder and even mania, which in turn can impair cognitive ability. A 2012 study published in the journal Arthritis Care & Research even suggests that physical activity and obesity may impact cognitive function in individuals with SLE. Patricia Katz and her team of researchers found that women with SLE and who were also clinically obese showed signs of cognitive impairment especially in executive function (memory, the ability to plan, multitask). The same was noted for women with SLE who did not exercise regularly. Often, brain fog may be caused by an underlying issue that has not been properly diagnosed.
One of the most compelling explanations, however, is increased antibody activity. In her review, Mackay identified that increased levels of cytokines such as IL-6 as well as increased levels of C-reactive protein have been shown to correlate with cognitive impairment in individuals with SLE. In two separate studies, Conti, Maria Gerosa and others found that individuals with SLE who also have increased antiphospholipid activity – or antiphospholipid syndrome (APS) – are at greater risk of experiencing cognitive dysfunction.
Specific antibody activity may also impact brain structures and how they function, specifically the hippocampus and amygdala. The hippocampus is located in the lower, middle part of the brain called the temporal lobe and is part of the limbic system. The hippocampus plays an important role in long and short-term memory and spatial memory that helps with movement and navigation. It is this structure that enables us to remember facts and events or how to travel across town. The amygdala is also part of the limbic system and is responsible for helping us process emotion. It is linked to feelings such as fear and pleasure and is also linked to conditions such as anxiety, autism and depression. In a 2012 review published in the journal Neuropsychology Review, Phillip Watson and other researchers summarized that individuals with SLE who also have anti-NMDAR antibodies were more likely to report cognitive impairment. N-Methyl-D-aspartic acid receptors (NMDAR) are found in the hippocampus and the amygdala. Anti-NMDAR antibodies can cause these neuron cells to die. While this has not been conclusively proven as a direct cause of cognitive dysfunction, the evidence is compelling.
In another study, researcher Maria Lauvsnes and her peers assessed 50 individuals with SLE and 50 individuals with primary Sjogren’s Syndrome. Individuals in both groups with the cerebrospinal fluid antibody anti-NR2 also had reduced hippocampal gray matter, which was associated with the prevalence of cognitive dysfunction. The researchers speculate that the presence of anti-NR2 causes cells in the nervous system to die – neuronal death – specifically in the hippocampus.
Testing Cognitive Function
There are many ways to test cognitive function. It is best if a trained neuropsychologist administers these assessments, though some may now be administered successfully on a computer.
Al Rayes and other researchers acknowledge that, while there is a high prevalence of cognitive dysfunction in SLE, there is no one perfect test for assessing it. After reviewing the literature, however, the researchers identified the most common tests that are administered to determine in which “specific cognitive domain” the dysfunction exists:
- Attention: Digit vigilance and auditory serial addition tests.
- Complex attention: Trail making, digital span, paced auditory and category tests.
- Memory, learning and recall: Story memory, figure memory, verbal learning tests.
- Visual-spatial processing: Facial recognition, visual organization, judgment of line orientation and figure tests.
- Language: Complex material subtest, reading comprehension and Peabody individual achievement tests.
- Reasoning and problem-solving: Wechsler adult intelligence scale and Ruff figural fluency tests.
- Processing and psychomotor speed: Trail making, digit symbol substitution and simple reaction tests.
- Executive function: Delis-Kaplan executive function, color-word inhibition, card-sorting, and controlled oral word association tests.
The American College of Rheumatology’s neuropsychological battery (ACR-NB) is considered the “gold standard” of cognitive impairment testing. The ACR-NB consists of 12 scores which touch on the domains above. It is also long, taking approximately four hours to complete. There is a shorter SLE-specific battery (ACR-SLE) that is more targeted and takes approximately one-to-two hours to complete. Both are costly, however, and require that trained personnel administer the tests, which is not always a viable option.
Acknowledging the lack of availability and financial burden of formal assessment testing, researcher John G. Hanly and his team suggest that individuals who believe they are experiencing cognitive impairment first complete a “self-report questionnaire” (Cognitive Symptom Inventory) to determine if more objective diagnostic testing is necessary. It is interesting to note that the researchers also found that cognitive complaints on the self-assessment correlated with complaints of anxiety and depression, but did not necessarily indicate positive cognitive dysfunction when objective testing was eventually administered.
As of 2019, a new testing method has been validated for use in diagnosing cognitive impairment in lupus. The Automated Neuropsychological Assessment Metrics test (ANAM) consists of 31 test modules, but can be mixed-and-matched according to need. U.S. military service personnel are often given the test prior to and after injury to assess brain function. The test takes between approximately 20-40 minutes and is done on a computer with minimal interference other than technical support as needed. It is cost-effective and yields valid results.
Managing Lupus Brain Fog
To date, there are not any medications that can be prescribed to specifically treat brain fog. Often, if there is an underlying issue that is identifiable – a drug reaction, anxiety or depression – a healthcare practitioner will intervene to treat that issue and in turn, the fog may alleviate to some degree. If a lupus flare coincides with the fog, managing the flare may in turn manage the fog. Lupus UK suggests that if the fog is caused by antiphospholipid syndrome (APS), blood thinners may be used to treat APS, and this may help with cognitive function. There are, however, coping strategies that can be used to manage overall well-being while experiencing brain fog.
Mackay suggests the following:
- Foster a good emotional environment. A strong support system is key to helping manage symptoms. Being surrounded by positive, trust-worthy family and friends can be key to coping when spoons are running low.
- Form a solid relationship with healthcare practitioners. Building trust, having a good rapport and openly communicating with healthcare practitioners will help both the practitioner and individual with brain fog develop and manage treatment plans.
- Practice self-care. Taking care of oneself by eating right, exercising, relieving stress and staying away from alcohol and tobacco will go far in nurturing overall well-being.
- Take care of the mind as well as the body. Doing activities that challenge the brain like puzzles, games or even reading can ensure the mind operates at its peak.
- Consider Cognitive Behavioral Therapy (CBT). Working with a therapist or other mental health healthcare practitioner can help individuals develop good coping habits to deal with brain fog and any related stress. Sometimes it even just helps to talk a problem through and have someone who is unbiased listen. A good mental health practitioner will also recognize symptoms of anxiety and/or depression and help treat those as well as they can be additional underlying issues for stress and frustration.
Lupus UK also recommends the following tactics to use daily to help make life a little easier when experiencing brain fog:
- Stay organized. Using planners, apps on a smartphone, electronic filing systems or even paper filing systems can help to stay organized and keep on top of appointments, treatment plans, medications and symptoms.
- Identify brain fog triggers. Paying attention to when the fog hits, when it liftsyou’re your overall health can help to identify what may be contributing to brain fog and what may help alleviate it. This information is not only invaluable for the individual experiencing the symptoms, but healthcare practitioners as well.
- Write everything down. Everything! Using phone apps for note-taking, keeping to-do lists, writing in journals or even using sticky notes can help with keeping on-task and on-target. Do not commit everything to memory – even in the best of circumstances, important things may get missed. Life happens!
- Learn memory techniques. Ask healthcare practitioners about memory exercises, puzzles or games that may help with retention and recall. Doing puzzles like word searches, crosswords, Sudoku or word jumbles can be a great place to start and can even be a fun distraction from the daily grind.
Researcher Roger C. Ho and his cohorts also suggest that an individual who is experiencing brain fog reprioritize their schedule so that they can accomplish more complex tasks during the day and more low-key, relaxing tasks towards the end of the day. Ho and his team also suggest completing one task at a time before moving on to the next – multitasking can just make things worse.
Impact of Lupus Brain Fog on Quality of Life
There is no doubt about the impact that brain fog can have on quality of life. An individual may not only feel the psychological effects of cognitive impairment, but it may also affect work life, sleep quality, mood, etc. Researchers Stephanie Nantes et al. acknowledge how “devastating” lupus fog can be, affecting “self-esteem, limiting [an individual’s] ability to work or do daily tasks such as cooking, reading, or remembering recent conversations.”
Being open to asking for help and communicating with others can help an individual who is experiencing brain fog to maintain a better quality of life. It may be difficult to figure out how to talk about brain fog, however, and an individual may feel alone or isolated and think no one will understand. Honesty will not only help healthcare practitioners monitor health and treatment plans, but will also help an individual’s support system understand what it is like to deal with cognitive impairment. Lupus UK makes the following suggestions for talking about brain fog with others:
- Be honest. An individual should let trusted friends and loved ones know when they are experiencing challenges with memory. Letting others know that if something slips the mind, it is not intentional nor due to lack of caring – it is simply because it is hard to retain information.
- Encourage others to help remember things. An individual can also ask others for friendly reminders while they are not feeling up to par. Sharing calendars and/or email accounts with a loved one can also help the other person keep track of where an individual should or should not be, if a bill was paid, etc. Asking others to send text messages can help an individual remember things as can placing sticky notes around the house on the refrigerator, on the bathroom mirror or even in the car.
- Let others know that this too shall pass: Friends and family may worry that the brain fog may not go away or will get worse. Assuring them that it is going to come and go and that it is safe – even though it may not always feel that way – will put them at ease. However, never be afraid to admit to being frightened or worried. Being honest and open with a trusted support system can help alleviate stress and anxiety. Everyone needs a little reassurance now and then.
While experiencing brain fog can be incredibly frustrating, being patient, communicative and willing to make some lifestyle changes can be incredibly beneficial. Practicing self-care and working within a team of trusted healthcare practitioners can improve health, emotional well-being and overall quality of life.
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Author: Liz Heintz
Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.
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