Lupus can affect your whole body, including your nervous system. Research shows as many as 90% of people with lupus have symptoms that involve their brain, spinal cord, or nerves. It’s called neuropsychiatric lupus.
It’s tough to know whether it’s lupus or something else that’s causing your nervous system symptoms. Here’s what to look for.
Neuropsychiatric Lupus Symptoms
When lupus causes problems in your central nervous system, made up of your brain and spinal cord, you may have:
- Cognitive difficulty (trouble thinking, remembering, and concentrating)
- Psychiatric disorders (depression, psychosis)
- Myelitis (spinal cord inflammation)
Lupus can also cause problems with your peripheral nervous system. Those are the nerves that run through the rest of your body and control your organs and limbs. You might have:
- Peripheral neuropathy (numbness, weakness, or pain)
- Vision loss
- Ringing in the ears
- Digestive problems
How Does Lupus Cause Nervous System Problems?
Doctors don’t completely understand what causes lupus. It’s an autoimmune disorder, which means it makes your immune system mistakenly attack healthy cells and tissue.
The lupus disease process creates certain proteins and antibodies that can cause inflammation in your brain and around your nerves. They can also damage your blood vessels, which makes it harder to get oxygen to your brain, and makes blood clots more likely.
It isn’t clear why some people with lupus get nervous system problems and others don’t. But they tend to appear when the disease is active, and you’re having symptoms in other parts of your body also.
How Do Doctors Diagnose Neuropsychiatric Lupus?
It can be hard to pin down a diagnosis of neuropsychiatric lupus. Many different things can cause symptoms like pain and memory problems, including medication. Your doctor may do tests to rule out an infection or other health problems.
You may have:
How Is Neuropsychiatric Lupus Treated?
There’s no specific treatment for nervous system problems related to lupus. Doctors will generally try to keep your disease under control, and treat your symptoms individually.
If you’re having an active lupus flare, you’ll likely get steroids or other anti-inflammatory medicines, or drugs that regulate your immune system.
Here’s how to manage some of the nervous system conditions that happen most often with lupus.
Cognitive problems. It’s very common for people with lupus to have trouble with thinking, memory, and concentration. It’s sometimes described as “brain fog.” It can be caused by the disease itself, or it can result from other symptoms. For example, if pain keeps you from getting enough sleep, that can make you foggy.
Talk with your doctor about whether there’s a physical cause for your cognitive problems. If not, you can learn ways to cope. Here are some tips:
- Write down important information.
- Focus on one thing at a time.
- Give yourself extra time to plan and do things.
- Consider a therapist or support group.
“Brain fog” with lupus tends to come and go. But it doesn’t seem to get worse over time.
Headache. Headaches are also very common for people who have lupus. But there’s some debate about whether the disease itself causes them.
For a long time, specialists have believed there’s a specific kind of “lupus headache,” that’s very painful, lasts a long time, and doesn’t get better with narcotic pain relievers. But researchers are finding that only a small number of people with lupus have that kind of headache. And there doesn’t seem to be any connection to the lupus disease process or the medications people take for lupus.
While people with lupus do get migraine, tension, and other kinds of headaches, it doesn’t appear to happen any more often than for people who don’t have lupus. Talk to your doctor about what kind of medication or lifestyle changes might help.
Seizures. The damage lupus can cause in your brain may lead to uncontrollable muscle movements, periods of confusion or loss of consciousness. Your doctor may try to control seizures by giving you steroids or anticonvulsant medications.
Stroke. A stroke is a medical emergency that needs immediate treatment. Get help right away if you suddenly have:
- An intense headache
- Numbness, weakness, or paralysis, particularly on one side of your body
- Trouble seeing, talking, or walking
If your doctor thinks lupus is putting you at risk for blood clots that can cause a stroke, they may have you take a blood thinner.
Widespread pain. As many as 1 in 5 people with lupus have peripheral neuropathy, which is widespread pain caused by nerve damage. You may also feel numbness or tingling. Parts of your body may become weak, or you may have trouble moving them.
Your doctor may recommend treating it with steroids and immune-suppressing drugs. But there isn’t good evidence to show whether they work. You might also try pain relievers, antidepressants, or anti-seizure medicines including gabapentin and pregabalin.
People with lupus are more likely to have fibromyalgia, another kind of pain disorder. Doctors don’t know what causes it, but they think it’s a problem with the way your brain senses pain. It has some of the same symptoms as peripheral neuropathy, including pain, numbness, and tingling. You may also be very tired and have trouble sleeping. Anti-seizure medicine and antidepressants may help, as well as lifestyle changes.