R. Morgan Griffin
Brunilda Nazario, MD
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.
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.
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.
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.
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.
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.
SOURCES:Bonnie Lee Bermas, MD, director, Center for Lupus, Brigham and Women's Hospital, Boston.Carey L. Busch, MA, assistant director of Disability Services, Office of Institutional Equity, Ohio University; cofounder of NavigateLupusFog.org.Dawn Isherwood, RN, House Educator, Lupus Foundation of America.Janet Foley Orosz, PhD, cofounder of NavigateLupusFog.org.Lisa Fitzgerald, MD, rheumatologist, Lupus Center of Excellence at the Beth Israel Deaconess Medical Center, Boston.Robert Katz, MD, associate professor of medicine, Rush Medical College, Chicago.Hospital for Special Surgery.Lupus Foundation of America.
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