Dealing With Lupus Brain Fog
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."