Patients have reported vivid nightmares involving serial killers, suffocation, and violent imagery. One Canadian patient described recurring nightmares of a serial killer, feeling a lingering sensation on their legs even after waking up. An English patient recounted nightmares of being unable to breathe, with someone sitting on their chest. Another shared experiences of “really nasty” violent visions.
“Horrific, like murders, like skin coming off people,” said an Irish patient about his nightmares. “I think it’s like when I’m overwhelmed which could be the lupus being bad … so I think the more stress my body is under then the more vivid and bad the dreaming would be.”
Nightmares and “daymares”—dreamlike hallucinations while awake—may signal the onset of autoimmune diseases like lupus and rheumatoid arthritis, the study suggests. These symptoms could also indicate an impending flare-up of an existing disease, requiring medical intervention, said lead study author Melanie Sloan, a researcher in the Department of Public Health and Primary Care at the University of Cambridge.
“This is particularly the case in a disease like lupus, which is well known for affecting multiple organs including the brain, but we also found these patterns of symptoms in other rheumatological diseases, like rheumatoid arthritis, Sjogren’s syndrome, and systemic sclerosis,” Sloan said in an email.
Lupus is a chronic condition where the immune system attacks healthy tissue, causing inflammation and pain in various parts of the body, including the brain, heart, joints, kidneys, liver, and lungs.
“Cognitive problems and many of these other neuropsychiatric symptoms we studied can have a huge influence on people’s lives, ability to work, to socialize, and just to have as much of a normal life as possible,” Sloan explained.
“These symptoms are often invisible and (currently) untestable but that shouldn’t make them any less important to be considered for treatment and support.”
Jennifer Mundt, an assistant professor of sleep medicine, psychiatry, and behavioral sciences at Northwestern University’s Feinberg School of Medicine, praised the study’s focus on nightmares.
“Although nightmares are a very distressing problem in many medical and psychiatric conditions, they rarely get focused on except in the context of PTSD (post-traumatic stress syndrome),” Mundt said in an email.
“A recent study showed that 18% of people with long-COVID have (frequent) nightmares, compared to a general population prevalence of about 5%,” she noted. “Hearing the patient perspective is critical so that research and clinical care can be guided by what is most important to patients themselves.”
While research in this field is still emerging, a 2019 study found that patients with inflammatory arthritis and other autoimmune diseases also experienced nightmares and REM sleep disorders like sleep paralysis. REM (rapid eye movement) sleep is the stage where dreams occur, and information is consolidated and stored in memory.
In that study, a 57-year-old man recalled nightmares of being “threatened by feral birds of prey,” while a 70-year-old woman dreamed her nephew was in grave danger, but she was helpless to assist him.
The new study surveyed 400 doctors and 676 people living with lupus, conducting detailed interviews with 50 clinicians and 69 patients with systemic autoimmune rheumatic diseases, including lupus.
Researchers found that 3 in 5 lupus patients and 1 in 3 patients with other rheumatology-related diseases experienced increasingly vivid and distressing nightmares before their hallucinations. These nightmares often involved falling, being attacked, trapped, or committing murder.
“I’d be riding a horse, going around cutting people out with my sword. One of them was somebody attacking me, and I ended up slitting their throat,” an English patient shared.
“I’m not a violent person at all. I don’t even kill an insect,” the patient continued. “And I came to the conclusion that’s probably me fighting my own (autoimmune) system. … I’m probably attacking myself, that’s the only thing I can logically make sense out of it.”
Systemic autoimmune diseases often present a range of symptoms, known as prodromes, signaling the potential for a severe worsening of the condition. In lupus, for example, symptoms like headaches, increased fatigue, swollen joints, rashes, dizziness, and fever without infection are well-known precursors to a flare-up.
Recognizing these warning signs is crucial, Sloan said, as it allows for “earlier detection and therefore treatment of flares, some of which can be organ-damaging and even fatal in lupus patients.”
However, unique warning symptoms like nightmares and daymares are not currently included in the diagnostic criteria for lupus or other diseases. The study found that doctors rarely inquire about such experiences, and patients often hesitate to discuss them.
“We strongly encourage more doctors to ask about nightmares and other neuropsychiatric symptoms—thought to be unusual, but actually very common in systemic autoimmunity—to help us detect disease flares earlier,” said senior study author David D’Cruz, a consultant rheumatologist at Guy’s Hospital and Kings College London.
Connecting the Dots to Autoimmune Disease
At first glance, it might seem logical that neurological symptoms like nightmares would occur if an autoimmune disease affects the brain, which lupus often does. However, the study revealed something unexpected.
“Interestingly, we found that lupus patients who were classified as having organ involvement other than the brain, such as kidneys or lungs, often also reported a variety of neuropsychiatric symptoms leading up to their kidney/lung flare,” Sloan noted.
This finding underscores the importance of considering a wide range of symptoms in the diagnosis and management of autoimmune diseases, potentially leading to more effective and timely treatments.