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,” said a MyLupusTeam member.
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 and a commonly reported symptom of lupus that may trip up your communication skills. While there’s no official definition of lupus fog, health experts have described it as causing issues such as “difficulty in articulating thoughts” and “memory impairment.”
Here are some factors that may be contributing to lupus fog and forgetting words, along with tips that can help you cope.
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 with lupus and can increase the risk of dissociative thought patterns — that is, disruptions in your usual thinking process — leading to forgetfulness or confusion. Another member mentioned, “It seems to be worse later in the day.”
Researchers have found that between 50 percent and 80 percent of people with systemic lupus erythematosus (SLE) — the most common form of lupus — experience sleep disturbances. More than 2,700 members of MyLupusTeam report having insomnia. Whether you have difficulty falling asleep or wake up frequently throughout the night, a pattern of poor sleep can worsen lupus flares and affect 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 another member.
Some MyLupusTeam members have noticed they have trouble with words more frequently when their other lupus symptoms are flaring. “It happens when I’m extremely tired or in a lot of pain,” shared one member. “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.”
Symptoms of a lupus flare can include various symptoms, including tiredness, headaches, dizziness, and fevers. Noticing a sudden change, like forgetting your words, may signal that it’s time to slow down and give your body some extra rest. Flare-ups can range from mild to severe. One member noted issues at the tail-end of a flare. They wrote, “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.
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 make confusion symptoms worse. Additionally, hydroxychloroquine (Plaquenil) can cause disrupted sleep and fatigue, which affect cognition.
People with lupus may also be prescribed medication for neuropathic pain 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,” they said.
“Memory problems” and “strange or unusual thoughts” are listed as side effects of gabapentin.
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 48,000 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, long-term memory, attention, and how quickly you can process information. Any of these cognitive symptoms could contribute to forgetting words.
People with lupus have a high risk of developing depression and anxiety. More than 8,900 members of MyLupusTeam report experiencing depression. Depression and anxiety, in turn, are associated with worse cognitive function, including areas like working memory and information processing speed.
There are steps you can take to potentially improve your issues with forgetting words and to better cope with this problem in the meantime.
Living a healthy lifestyle will help improve your quality of life with lupus — and may also help with cognitive dysfunction. Getting plenty of sleep, exercising regularly, and avoiding alcohol are all important tips for improving sleep, especially if you forget your words or struggle through conversations.
If you suspect that lupus symptoms like pain, insomnia, and depression may be contributing to cognitive problems, talk to your doctor. Make them your partner, and advocate for more and better options for managing your lupus symptoms. And remember, your mental health is just as important as your physical health. Effective treatments are available that can help with depression or anxiety.
Maintain open communication with your health care team about any unexpected symptoms, even if you’re unsure whether your medication could be to blame. Medication can affect people differently, and your doctor may offer you options to try another therapy, adjust your dosage, or change the time when you take it to reduce unwanted side effects.
Some people with lupus find that communicating through writing is easier than talking in daily life. “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.
Texting and emailing can give you extra time to express yourself without feeling pressured or rushed.
You can also write down what you want to say or jot down a few notes or key points to prepare before a conversation. Bring it with you and refer to it so you remember what you wanted to discuss. “Buy a ton of notebooks, that’s what I do, and a calendar,” said a MyLupusTeam member. “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, while others prefer not to. “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.”
Another member said, “When I am around someone who doesn't know me, I don’t bother to explain. I just say, ‘Sorry, the word isn’t coming to me right now,’ and move on.”
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 222,000 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 MyLupusTeam.