Lupus is an autoimmune disease that damages all the organs in the body, including the brain. “Lupus brain fog” refers to cognitive problems, mood imbalances, and the fatigue people experience. It’s common but infrequently talked about. In this article, we bring up some possible symptoms and potential complementary strategies to discuss with your doctor.
What is “Lupus Fog”?
Many people with lupus suffer from “brain fog,” mood disorders, and fatigue. The term “lupus fog” was coined to describe all these symptoms .
Research suggests that about 10% to 80% of people diagnosed with lupus experience cognitive problems at some point. The range is so large partly because different criteria are being used to define cognitive decline and low mood [2, 3, 4, 5, 6].
Systemic lupus (systemic lupus erythematosus or SLE) is a chronic autoimmune disease that often affects women more than men .
In lupus, white blood cells incorrectly identify the body’s own tissues as a threat. These cells become hyperactive and produce antibodies against healthy tissues. The tissues under attack — including the brain, skin, muscles, bones, and lungs — become inflamed and less functional .
Research suggests that when lupus affects the central nervous system — the spinal cord and brain — people may begin to experience “lupus brain fog” and/or headaches, depression, anxiety, seizures, and strokes .
- Reduced mental clarity (“mental fogginess”)
- Slower thinking
- Inability to focus
- Reduced ability to multitask
- Long- and short-term memory loss
People subjectively describe feeling forgetful, confused, and scattered — enveloped in what is felt as a “thick mental haze.” They feel their brain is slower and less agile than it should be. Thoughts become sluggish, blurred, and draining .
According to one theory that has yet to be verified, “brain fog” might be caused by inflammation in the brain (as in lupus). Scientists hypothesize it might be triggered by [14, 13, 16]:
- Lack of sleep
- Reduced blood flow to the brain
- Hormone imbalances
- Medications, and
- Many medical conditions
It’s important to partner up with your doctor to uncover the underlying causes of your symptoms.
People say “brain fog” is so frustrating because, for one, it is not a diagnosis. It’s a set of subjective symptoms. You may have “brain fog”, but it could be too “mild” or “unspecific” to be labeled as cognitive impairment. Likewise, “lupus fog” is not a diagnosis, though doctors accept its existence.
Symptoms of “Lupus Fog”
According to the research and clinical data, the main symptom of “lupus fog” is cognitive dysfunction: people may experience long- and short-term memory problems, have difficulty forming abstract thoughts, and feel like their sense of judgment is off [1, 17].
Personality & Productivity Changes
Some people also feel like they can’t understand and express speech (aphasia) or plan movements. Others find it difficult to recognize familiar objects (agnosia) and may also undergo personality changes [1, 17].
Studies point out that it often arises alongside depression, fatigue, and anxiety early on — each of which can worsen “brain fog” .
People with “lupus fog” may also experience a “clouding of consciousness” that intensifies at night. They often find it hard to focus and have reduced awareness of their physical environment. It can get frustrating, and people describe feeling like they’re losing control, becoming agitated, or even aggressive .
Why Does “Lupus Brain Fog” Happen? Proposed Mechanisms
The exact cause of “lupus brain fog” is unknown.
However, research is still in the early, experimental phases.
Therefore, all the factors and biochemical processes outlined below are experimental and their contribution to disease development uncertain. The aim of this section is to outline research findings for informational purposes only.
Potential mechanisms shown here are commonly associated with “lupus fog.” Work with your doctor or other health care professional for an accurate diagnosis.
Also, have in mind that complex disorders like lupus and its associated cognitive symptoms always involve multiple possible factors – including brain chemistry, environment, health status, and genetics – that may vary from one person to another.
1) Blood-Brain Barrier Breakdown Might Let Toxins In
According to one unverified theory, one of the reasons “lupus brain fog” happens might be blood vessel disease. Scientists hypothesize that the barrier between the bloodstream and brain might start breaking down (i.e. “leaky brain”), allowing harmful substances to sneak in. Antibodies also purportedly enter the brain this way, potentially increasing inflammation, damaging brain cells, and triggering memory problems [20, 21].
2) Antibodies Against Brain Cells May Worsen Cognition
Directly connected to blood-brain barrier damage, one analysis of 41 studies compared antibody levels in lupus patients with and without “brain fog.” Patients experiencing “lupus fog” had more antibodies targeting brain cells and their key components (i.e. ribosomes) .
Another study confirmed the association: among samples from 44 patients with lupus, more antibodies targeting brain cells were found in people also experiencing cognitive disturbances .
All of these studies dealt with associations only, which means that a cause-and-effect relationship hasn’t been established.
Just because “lupus fog” has been linked with higher antibody levels targeting brain cells doesn’t mean that “lupus fog” is caused by these antibodies. Data are lacking to make such claims.
Therefore, this theory also remains unproven and controversial.
3) Damage to the Brain’s White Matter Might Impair Learning
In one analysis, 51 people with lupus underwent brain scans (MRI) and had greater damage to the white matter than the general population. The authors didn’t consider this to be the cause of “brain fog” [26, 27, 28].
Further research on this potential association is needed.
- Infections (as a result of SLE therapies that reduce immune function)
- Damage to other organs (i.e. kidney damage leads to toxin buildup)
- High blood pressure
- Toxic effects of SLE therapy (i.e. steroids)
Lupus-Associated Memory & Brain Health Changes
Lupus fog can change a person’s personality and make them extremely forgetful. Limited research suggests that cognitive impairment not only impacts everyday life, it may also increase the risk of some mental health disorders [30, 31].
1) Cognitive Decline
Studies point out that “lupus fog” starts early on but may improve with time
When a group of researchers followed 43 people with systemic lupus over 10 years, cognitive impairment improved in 50% of them, while it got worse in only 10% .
Cognitive problems are widespread
- Environmental awareness: not understanding where you are relative to objects around you; you may find yourself confused or bumping into things.
- Cognitive function: slow thinking, narrow attention span, difficulty focusing.
- Short-term memory: not being able to remember new and recent information or thoughts; completing everyday tasks can feel extremely difficult;
- Verbal Reasoning: inability to analyze information and problems from pieces of text; you may find it harder to think about what you read in books and newspapers.
- Other: problems with vigilance, visual memory, and reaction time
Your coordination of movements may also be affected. This may play into the fatigue and “slowness” people with lupus fog experience .
Multiple Sclerosis “brain fog” is typically more severe.
Although lupus fog can be severe, “brain fog” from multiple sclerosis is usually described as much worse. Nerve and brain damage — especially to the white matter that creates the brain’s circuits — is more severe in multiple sclerosis .
2) Memory Loss
Lupus is strongly linked with both dementia and cognitive impairment (“pre-dementia”), according to an analysis of 11 studies and almost 82,000 people in total .
Memory loss can be severe enough to reduce a person’s work capacity. One survey revealed that people with systemic lupus suffering from severe memory impairments are less likely to be employed .
Research suggests that mood imbalances may be from the shock of being diagnosed with the disease, on the one hand. But some evidence reveals that the disease itself may also worsen mood. Depression might be six times more likely in people with systemic lupus than in healthy individuals [48, 49, 50].
According to an analysis of over 10k adults, depression and anxiety were much more common in people with lupus (up to 30%). Both low mood and anxiety can impact energy levels, potentially adding to the “brain fog” .
- Reduced physical activity
- Sleep disorders or poor sleep quality
- Depression and mood imbalances
- Vitamin deficiencies
- Other health problems
In a study of 60 childhood-onset cases of lupus, 65% had fatigue. According to a study of 59 people with lupus, over half said fatigue was the worst symptom that they were experiencing. In a similar study, 81% of 120 people with lupus had fatigue [56, 57, 58, 59, 60, 61, 62].
5) Mood and Personality Disorders
Some people with systemic lupus develop “manic” behavior, which doctors classify as an organic personality disorder. The term refers to personality disorders caused by physical changes to the brain .
Scientists believe that mania can result from lupus treatment with steroid drugs, in some cases .
In mania, energy increases; people become irritable and feel like they don’t need any sleep. They may feel like they’re not quite themselves. Research suggests that the following personality changes are also possible :
- Rapid changes in mood
- Sexual indiscretion
- Wordiness when speaking
Researchers highlight that all mood disorders, including mania, can worsen “brain fog” .
According to a 10-year study of almost 2000 people with systemic lupus, 13-18% had mood disorders .
In one study, 65% of 326 women had a mood or anxiety disorder, including :
- Major Depressive Disorder (47%)
- Specific Phobia (24%)
- Panic Disorder (16%)
- Obsessive-Compulsive Disorder (9%)
- Bipolar Disorder (6%)
In another study of 71 women with SLE, the life-long prevalence of mood problems was :
- Mood disorder (69%)
- Anxiety disorder (52.1%)
- Adjustment disorder (8.4%): long-term stress, sadness, and hopelessness caused by major life events
- Alcohol abuse (1.4%)
Based on the existing evidence, it seems like women with “lupus fog” are more likely to develop mood disorders than men. They appear to be especially at risk of depression and anxiety.
Limitations and Caveats
Not a lot of research has specifically focused on “lupus brain fog.” A lot of the research out there is based on observational and cohort studies. While these do reveal potential associations, better-designed human studies would provide stronger evidence.
Many of the studies used questionnaires, surveys, interviews, and other means of collecting data. However, different studies used different methods of measurement, which creates inconsistencies in studies evaluating the same variables — especially when it comes to “lupus fog.”
More research about the cognitive impacts of systemic lupus (SLE) is needed.
14 Potential Complementary Strategies for Coping with “Lupus Fog”
Before You Try Anything, Team Up with Your Doctor
If your goal is to improve your brain health to deal with your cognitive issues — including those of “lupus fog” or lupus-associated energy, personality, or mood changes — it’s important to talk to your doctor, especially if your symptoms are significantly impacting your daily life.
Major memory and behavior changes — such as forgetting recent events or conversations, feeling like you’re losing control or “going crazy,” having trouble finding the right words to describe something, and low mood or apathy — are all reasons to see a doctor.
Many conditions, some of which are treatable, can result in symptoms similar to “lupus fog.” Your doctor should diagnose and treat the condition causing your symptoms.
The main goal should be to get the disease under control. It’s important to be open with your doctor about your symptoms and concerns.
Despite the variety of available medical treatments for systemic lupus, none focus specifically on tackling “lupus brain fog.” That’s why, aside from your standard medications for lupus, your doctor may prescribe additional drugs to help manage your cognitive symptoms.
Taking your medications and following your doctors’ recommendations will help keep your symptoms, including “lupus fog,” under control.
Scientists are investigating whether any natural strategies can help people cope with “lupus fog.” Most are aimed at supporting overall mental health and wellness.
You may try the additional strategies listed below if you and your doctor determine that they could be appropriate.
Read through the approaches listed here and discuss them with your doctor before trying them out. None of these strategies should ever be done in place of what your doctor recommends or prescribes.
1) Peer Mentoring
Peer mentoring provides psychological relief for people with lupus fog. If you have lupus fog, getting the right information from people who have been through the same may lower your anxiety and depression. It also equips you with coping mechanisms and makes you more independent .
2) Stress Reduction & Psychotherapy
Psychological interventions — such as stress reduction and psychotherapy — may reduce your anxiety, stress, and disease activity levels. This was shown in an analysis of 537 people with lupus across 6 different studies [77, 78].
The following has been suggested to help with lupus fog :
- Cognitive behavioral therapy
These therapies focus on minimizing how much lupus impacts your daily living. Three clinical trials showed that these interventions can also reduce fatigue, but a few other clinical trials didn’t consider them beneficial enough .
3) Social Support
According to research, having strong social support is important for reducing depression, pain, and fatigue. An observational study involving 127 people with lupus attests to the benefits of social support .
Exercise is described as helpful in increasing energy levels in people who are fatigued because of lupus. Clinical trials involving people with lupus showed that the more people exercise, the more energy they will have [79, 80].
5) Stop Smoking
People who want to reduce “lupus fog” shouldn’t smoke. An analysis of 21 studies determined that cigarette smoking increases the disease activity of lupus, which will make “lupus fog” worse .
6) Lose Extra Weight
If you are overweight, it may be important to lose the extra pounds. Observational studies show a link between weight loss and “lupus fog” improvements .
Each person needs a personalized plan based on what their needs and food sensitivities are. If you’re not sure where to start, talk to your doctor and see a qualified nutritionist.
Getting enough nutrients from healthy food and balanced caloric intake supports overall wellness. Maintaining a healthy weight is also beneficial.
7) Improve Your Nutrient Status
Some healthy dietary changes that have been suggested to reduce “lupus fog” include :
- Eating whole grains instead of refined grains
- Using sea salt instead of refined salt
- Rice, barley, or maple syrup instead of sugar
- Daily consumption of fresh vegetables
- At least one fruit per day
- Including fresh fish
- Adding flaxseed, pumpkins, carrots, nuts, oranges, and apples to your diet
8) Caloric Restriction
Restricting calories has been hypothesized to support the immune system and energy levels, which might theoretically reduce the impact of lupus. Human data on this approach are lacking, but some evidence suggests that people who are obese experience more severe effects of lupus [75, 74].
9) Low Glycemic Index Diet
Regulating sugar levels can give people more energy and help them lose weight in a healthy way. Clinical trials suggest that a low-glycemic-index diet is just as effective as a low-calorie diet in supporting energy levels and weight loss .
Have in mind that supplements have not been approved by the FDA for medical use. Supplements generally lack solid clinical research. Regulations set manufacturing standards for them but don’t guarantee that they’re safe or effective.
Lastly, supplement-drug interactions can be dangerous and, in rare cases, even life-threatening. Many supplements may interact with lupus disease medications. That’s why it’s so important to consult your doctor before supplementing and let them know about all drugs and supplements you are using or considering.
No supplements have been proven to help with “lupus fog.”
Supplements emphasized by one analysis of 11 studies are :
10) Omega-3 Fatty Acids
11) Vitamin D
Researchers are investigating whether turmeric can improve kidney function (reduce proteinuria and hematuria) and blood pressure.
13) Thunder God Vine
People with lupus who suffer from “brain fog” are sometimes said to have “lupus fog.” They often also experience low mood, anxiety, fatigue, and personality changes.
“Lupus fog” may impair memory, learning, focus, and attention. Its underlying cause is unknown, though inflammation and autoimmunity have been implicated.
Research suggests that “lupus fog” often arises early on and it tends to go away on its own. In rare cases, it may progress to dementia.
Speak to your doctor if you think you have “lupus fog.” Additionally, look to get psychological and social support and lead a healthy lifestyle.