In about half of the people with lupus, the disease attacks the central nervous system, which is made up of the brain and spinal cord. Lupus can also affect the peripheral nervous system, which is made up of the nerve fibers that give skin and muscles the power for feeling and movement.
Brain and spinal cord involvement can happen in a variety of ways and result in many different symptoms that can include problems with memory and emotional responses (such as anxiety and depression), confusion, headaches, seizures and strokes. These developments can be very frightening and frustrating. Thankfully, there are steps a person can take to make things easier. Doctors who specialize in these complications are called neurologists and they work closely with your rheumatologist.
Many people with lupus—at least one in five—have trouble thinking clearly at some point and experience memory problems, confusion, fatigue, or difficulty expressing thoughts. Called cognitive dysfunction, the condition likely occurs because blood stops flowing as smoothly to the brain as it should. This also can happen when lupus antibodies cross the “blood-brain barrier,” directly damaging brain cells in areas that store memories and other important information. Cognitive dysfunction may come and go, but often steadily worsens over time.
As part of cognitive dysfunction, some people with lupus get spells of “fogginess” when, for several seconds or minutes, they can’t get to information that they know is in their heads. They may read the same sentence over and over again, for example. Or struggle with a normally easy task, like balancing a checkbook or dialing a familiar number.
Reassurance from loved ones helps a lot, as well as behavioral counseling, physical or speech therapy, biofeedback, techniques for relaxing the body and mind, and concentration strategies. A lupus diary can be useful to track when fogs happen and what works for dealing with them. Medicines may lessen the fatigue or depression that makes thinking hard. Doctors are learning a lot about how lupus antibodies hurt brain cells and are testing medicines for dementia that might someday help people with lupus.
Blood flow to the brain feeds brain cells with nutrients (food) and oxygen. Strokes occur when this blood flow is interrupted and brain cells die from the lack of oxygen, causing symptoms such as tingling sensations and problems with vision, speech, and movement (including paralysis). People with lupus have a higher risk for stroke, especially the third or so who have “antiphospholipid antibodies” that make blood “sticky” and more likely to clot and stop or slow blood flow to the brain. Although uncommon, inflammation in the spinal cord or brain’s blood vessels also happens with lupus and can lead to paralysis, seizures, difficulty judging reality, and loss of consciousness.
Some people with lupus have mild but noticeable changes in behavior such as unusual feelings of fear or lack of fear, or loss of interest or curiosity. More commonly, the fatigue and pain of lupus is draining to the point that a person changes his or her outlook on life. Depression, related to the disease itself or a reaction to having a chronic illness, is also common. Corticosteroids and other lupus medicines sometimes make matters worse by causing weepiness or other exaggerated feelings. The “emotional rollercoaster” of lupus is something that always should be discussed with a doctor.
A doctor can do a physical examination, test blood and spinal fluid, or take imaging tests or electrical studies of the brain. These sometimes help in figuring out what is going on. But a diagnosis often is difficult to make because infection and side effects from medicines can lead to the same signs and symptoms as active brain lupus, and no single test can show without question that lupus is the cause.
No matter whether the problem is mild or severe, there often are effective and surprising ways of handling lupus thinking problems, memory difficulties, and behavior issues. Counseling and antidepressant medicines help many people. Support groups are a good place to hear about ideas on concentrating better, remembering important things, and thinking more clearly. Knowing that others live with the scariness and unknowns of lupus can also make having the disease less lonely. More severe nervous system involvement, such as confusion, seizures or stroke, may require more aggressive treatment with immunosuppressive medications. With time and luck, the researchers hard at work figuring out what can be done to stop lupus from damaging the brain will have some solid answers about cause and better treatments.
A lot of people with lupus get very bad headaches like yours, with throbbing and intense pain that feels like a migraine. Rest and take any headache medicines the doctor may prescribe. Also try keeping track in a diary of when the headaches happen and what works for dealing with them. This is a good way to identify what triggers your headaches. Always tell your doctor about headaches, since having more of them may indicate a lupus flare.
Reviewer: Daniel J. Wallace, MD