Lupus fog -- the forgetfulness and fuzzy-headed feeling that can come with lupus (systemic lupus erythematosus, or SLE) – can be one of the most frustrating symptoms of the condition.
The term lupus fog means more than memory problems. It also refers to cognitive difficulties, such as trouble helping your child with homework, or writing a grocery list.
"It can really make your whole world fall apart," says Janet Foley Orosz, PhD, a public policy expert in Ohio who has struggled with lupus fog for almost 20 years. She's now collaborating on a web site and vocational program designed to help others with the condition.
There's no cure for lupus, so there's no cure for lupus fog either. But there are ways to work around your problems with concentration and memory. Here's what you need to know.
What Is Lupus Fog?
Lupus fog is a general name for the cognitive impairments that often appear with lupus, including concentration and memory problems, confusion, and difficulty expressing yourself. These cognitive problems are often worse during flares.
The good news: Lupus fog doesn’t usually get progressively worse, like dementia or Alzheimer's disease, says Lisa Fitzgerald, MD, a rheumatologist at the Lupus Center of Excellence at the Beth Israel Deaconess Medical Center in Boston. Instead, memory issues will probably wax and wane, just like other lupus symptoms.
The exact cause of lupus fog is hard to pin down, experts say. In some cases, lupus can damage cells in the brain, leading directly to cognitive problems. However, in most cases other factors play a role, including fatigue, stress, and depression. Lupus fog is sometimes worse in people who also have fibromyalgia. Although it's possible that side effects from drugs such as NSAIDs or steroids could worsen lupus fog, experts say that switching medicines rarely resolves the problem.
While researchers study possible causes of lupus fog, Orosz focuses on coping strategies that help people deal with it.
"When you're a person dealing with lupus fog, you don't worry that much about what's causing it," says Orosz. "What you care about is learning how to work around it."
Here are some tips that may help you deal with lupus fog.
Tips to Improve Lupus Fog Symptoms
- Put it in writing. "It's really important to lighten the load on your working memory," says Orosz. Instead of trying to keep stuff in your head -- and failing -- write it down. Write everything down -- every household chore, every birthday, and every doctor's appointment. Take notes during conversations. You need to get in the habit of writing down even the stuff you’re positive you would never forget.
- Stay organized. Keep everything in a daily planner so you don't end up with your notes on random scraps of paper. Consult it many times a day. Come up with a schedule and manageable to-do list -- or even just one specific goal -- for every day. If you have a smart phone, get a good note-taking app that you can access on your phone and on your computer.
- Prioritize. "I divide tasks into two categories -- things I must do and things that would be nice to do," Orosz says. "Then I only do the must-dos." She says an alternative way to organize is to rank to-do items by how much stress they're causing and to get rid of the stressful stuff first.
- Say it out loud. "Things seem to stick better in the short-term memory if you say them aloud," says Robert Katz, MD, a rheumatologist and associate professor of medicine at Rush Medical College in Chicago. When you meet new people, use their name a few times in the conversation. After a chat or meeting at work, repeat the main points -- it will help solidify your memory and let others fill in anything you missed.
- Time yourself. Orosz says that people with lupus fog should figure out when they're most efficient and schedule important tasks for then. Maybe it's a particular time of day or after a medication dose. Keeping track of time can help in other ways. "Allot a specific amount of time for a task and keep yourself to it with a timer," she says.
- Stretch your memory. Playing word games and doing crossword puzzles can help sharpen your memory. "Many of the techniques that help older people who are getting forgetful will also benefit people with lupus fog," Fitzgerald says. Keep your mind active and engaged.
- Keep good habits. If you have lupus, you need to take care of yourself. Reducing stress, taking naps, and getting enough sleep at night could help relieve lupus fog symptoms. "Regular exercise is important," says Fitzgerald. "It does seem to make the brain sharper."
Getting Expert Help for Lupus Fog
When it comes to lupus fog, don't go it alone. Experts can help teach you ways to work around the cognitive symptoms.
Orosz suggests getting a referral to a neuropsychologist. Other types of experts who may help you cope with lupus fog include vocational counselors, cognitive therapists, and some occupational therapists.
Make sure these specialists have experience helping people cope with concentration and memory problems. They don't need to be experts in lupus specifically. Other conditions – such as MS and fibromyalgia -- can cause similar types of concentration and memory problems. But the specialists do need to know how to help people with brain fog.
Pay attention to the costs. Insurers will hopefully cover a referral to a neuropsychologist, Orosz says, but coverage for cognitive therapy or occupational therapy might be more limited.
Living with Lupus Fog
- Be honest with yourself. If your lupus fog symptoms are mild, you might not need to alter your routine much. If your lupus fog is severe -- or long-lasting -- you might need to consider big changes to your life and career.
That’s not easy. Just remember that trying to maintain a schedule that's become too demanding -- and living in a state of panic and anxiety -- will make you miserable. It will affect your family. It could very well worsen your lupus too.
"Having lupus fog will force you to change your expectations sometimes," says Orosz. "It can be really hard to let go." But making a big and necessary change will likely benefit you and your family in the long run.
- Be open with your family. Have an honest conversation with your loved ones about lupus fog. Make clear that lupus fog is not dangerous. It will probably come and go. They also need to understand that when things slip your mind -- like a child's soccer game or recital -- it's a symptom, and not because you don't care.
Enlist your loved ones' help in supporting your memory. Ask them to use notes, texts, or email to remind you of things, instead of just telling you. You and your spouse may need to change how you divvy up responsibilities too.
- Consider talking to your employer. Lupus fog can be especially hard to manage at work, where concentration and memory problems might make you look lazy or unreliable. Some people with lupus decide to talk to their managers about the problem.
Plan for the conversation. You need to know what you want to say and what you want to ask for. Some modest changes -- modifying your hours or allowing for a little extra time on certain projects -- may help. Before the talk, you may also want to talk to a counselor – such as an advocate from the Job Accommodation Network (JAN) -- about your rights under the Americans with Disabilities Act.
Having lupus fog can be terribly discouraging. It can undermine your confidence and even your sense of self, Orosz says. It’s important to remember that it's not you. Lupus fog is just another lupus symptom -- like achy joints or facial rash.
Don't despair and don't settle for the symptoms. Talk to your doctor and see if you can get a referral to someone who specializes in treating lupus fog. The right treatments will help you feel better and more confident again.