Everyone loses their train of thought occasionally, but people with lupus may notice this happening more often. “One minute, I’m talking and forming sentences just fine, and the next, I’m forgetting or stumbling over my words,” a MyLupusTeam member said.

Another member wrote, “It’s so frustrating and embarrassing! I’ll forget the names of people I’ve known for a year, or what I am saying, in the middle of a story.”

Brain fog is a form of cognitive impairment (problems with thinking, memory, and learning), and this commonly reported symptom of lupus may trip up your communication skills. Although there’s no official definition of “lupus fog,” researchers describe it as causing issues such as “difficulty in articulating thoughts” and “memory impairment.”

You might ask yourself, “Why do I keep forgetting things?” or “Why do I forget what I’m talking about midconversation?” Here are some factors that may contribute to lupus fog and forgetting words, along with tips that can help you cope.

1. Lack of Sleep

Not getting enough sleep can cause lupus brain fog symptoms. When talking about forgetting words, one member stated, “I notice it more when I’m tired.”

Fatigue is common in lupus and can increase the risk of dissociative thought patterns — disruptions in your usual thinking process — which may lead to forgetfulness or confusion. Another member mentioned, “It seems to be worse later in the day.”

Researchers have found that between 55 percent and 85 percent of people with systemic lupus erythematosus (SLE) — the most common form of lupus — experience sleep disturbances. One study found that sleep problems were the most common self-reported cause of lupus-related cognitive impairment.

More than 2,800 members of MyLupusTeam report having insomnia. Whether you have difficulty falling asleep or wake up frequently during the night, a pattern of poor sleep can worsen lupus flares and affect both mental and physical health. “I think some of it is due to a lack of deep sleep. When you toss and turn, you don’t get to the deep sleep needed to rest that part of your brain,” commented one member.

2. Lupus Flare-Ups

Some MyLupusTeam members have noticed they have more trouble with words when other lupus symptoms are flaring. “It happens when I’m extremely tired or in a lot of pain,” one member shared. “It takes just a blink of my eyes, and I can’t remember what I was saying. It’s very hard at work because I’m a teacher at an academic library.”

Lupus flares can include various symptoms, including tiredness, headaches, dizziness, and fevers, and range from mild to severe. Noticing a sudden change, like forgetting words, may signal that it’s time to slow down and give your body some extra rest. One member noted issues at the tail end of a flare: “After a flare, I’m incredibly worse with stuttering or having a loss of words. The fog is bad.”

Recognizing how flare-ups affect you can help you better understand your body.

3. Medication Side Effects

Lupus treatment may involve taking multiple medications, and some can have side effects that disrupt brain function. For example, steroids are often used to treat lupus flares, and they can cause mental changes like mood swings or psychosis (loss of contact with reality). Additionally, hydroxychloroquine (Plaquenil) can cause disrupted sleep and fatigue, which affect cognition.

People with lupus may be prescribed medication for neuropathic pain (caused by damage to the nervous system) or seizures. A member of MyLupusTeam shared, “I learned that gabapentin (Neurontin) will slow your response on getting the right words out. Once the med is stopped, it goes away. But for me, the benefits of taking it are worth it.”

“Memory issues” and “strange or unusual thoughts” are listed as side effects of gabapentin.

4. Chronic Pain

Pain symptoms from lupus may affect your ability to think and speak clearly day to day. Joint pain and other forms of pain are common symptoms of lupus, and more than 53,000 members of MyLupusTeam report experiencing at least one type of pain. Research on people with autoimmune diseases shows that chronic pain can affect many aspects of cognition, including:

• Working memory (ability to keep a bit of information in mind while performing a task)
• Long-term memory
• Attention
• Speed of processing information

Any of these cognitive symptoms could contribute to forgetting words.

5. Mental Health

People with lupus have a high risk of developing depression and anxiety. More than 9,000 members of MyLupusTeam report experiencing depression. Depression and anxiety, in turn, are linked with worse cognitive function, including areas like working memory and processing speed.

How To Improve Issues With Forgetting Words Midsentence

You can take steps to potentially improve your issues with forgetting words when talking and while managing this problem.

Make Lifestyle Changes

A healthy lifestyle will help boost your quality of life with lupus and may also help with cognitive dysfunction. Getting plenty of sleep, exercising regularly, and avoiding smoking cigarettes are all important for improving lupus symptoms, which might help with lupus fog.

Visit a Cognitive Therapist

Cognitive therapists specialize in helping to improve mental function. Using techniques like puzzles, games, memory aids, and calendars, a cognitive therapist can help you manage symptoms of lupus fog. These include memory problems, difficulty finding words while speaking, and confusion that interferes with school or work.

Improve Your Symptom Management

If you suspect that lupus symptoms like pain, insomnia, and depression may be contributing to cognitive problems, talk to your doctor. They should serve as your partner and advocate for better options to manage your lupus symptoms. Your mental health is just as important as your physical health, and effective treatments can help with depression or anxiety.

Discuss Medications With Your Doctor

Maintain open communication with your healthcare provider about any unexpected symptoms, even if you’re unsure whether your medication could be to blame. Medications can affect people differently, and your doctor may suggest trying another therapy, adjusting your dosage, or changing the timing of your medication to reduce unwanted side effects.

Adapt How You Communicate

Some people with lupus find that communicating through writing is easier than talking in daily life. Texting and emailing can give you extra time to express yourself without feeling pressured or rushed. “It’s easier for me to type out what I want to say, which is why I’d rather send emails than make phone calls,” said a MyLupusTeam member.

You can also jot down key points to prepare for a conversation. Bring these notes with you so you remember what you want to discuss. “Buy a ton of notebooks — that’s what I do — and a calendar,” one MyLupusTeam member suggested. “Write down everything. Take notes from phone conversations and physical conversations.”

Another said, “I forget everything, so I write a list of things that have to be done or what I need to say if I call someone.”

Some members find it easier to explain their issues to others: “I usually warn whoever I’m speaking to that I’m having problems with my words … so just bear with me! Most understand and will concentrate more closely on what I'm trying to say.”

Others prefer not to share those details.“When I am around someone who doesn’t know me, I don’t bother to explain,” reported one member. “I just say, ‘Sorry, the word isn’t coming to me right now,’ and move on.”

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 234,000 people with lupus come together to ask questions, give advice, and share their stories.

Do you forget words midsentence? Have you noticed other symptoms of lupus brain fog, and do you have any tips for dealing with them? Post your thoughts in the comments below, or start a conversation by sharing on your Activities page.