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ATLANTA — The nightmares are intense and often horrifying, sometimes lasting well into the day.
Nightmares and "daymares," dreamlike hallucinations that appear when awake, may be little-known signs of the onset of lupus and other systemic autoimmune diseases such as rheumatoid arthritis, according to a new study published Monday in the journal eClinicalMedicine.
Such unusual symptoms may also be a signal that an established disease may be about to intensely worsen or "flare" and require medical treatment, said lead study author Melanie Sloan, a researcher in the Department of Public Health and Primary Care at the University of Cambridge in the United Kingdom.
"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 the other rheumatological diseases, like rheumatoid arthritis, Sjogren's syndrome and systemic sclerosis," Sloan said in an email.
"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," she said.
"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 in Chicago who was not involved in the study, said in an email she was pleased the study focused 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," Mundt said.
"A recent study showed that 18% of people with long-COVID have (frequent) nightmares, and this compares to a general population prevalence of about 5%," she said. "Hearing the patient perspective is critical so that research and clinical care can be guided by what is most important to patients themselves."
Doctors and patients need to know
While research in the field is rather new, a March 2019 study found patients with inflammatory arthritis and other autoimmune and inflammatory diseases also experienced nightmares and other sleep disorders such as sleep paralysis.
In that study, one 57-year-old man recalled being "threatened by feral birds of prey" in his nightmares, while a 70-year-old woman dreamed her nephew was in grave danger but she could do nothing to help him.
Researchers found 3 in 5 lupus patients, and 1 in 3 patients with other rheumatology-related diseases, had increasingly vivid and distressing nightmares just before their hallucinations. These nightmares often involved falling or being attacked, trapped, or crushed or committing murder.
"I'd be riding a horse, going around cutting people out with my sword," the English patient said.
"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.
Recognizing warning signs of lupus is important, Sloan said, because they allow "earlier detection and therefore treatment of flares, some of which can be organ damaging and even fatal in lupus patients."
Unique warning symptoms such as nightmares and daymares are not in the diagnostic criteria for lupus or other diseases, Sloan said. The study found doctors infrequently ask about such experiences, and patients often avoid talking about them to their physicians.
"We are strongly encouraging 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.
Connect the dots to autoimmune disease
It would make sense that such neurological manifestations as nightmares would occur if the autoimmune disease impacts the brain, which lupus often does, Sloan said. But that's not what the study uncovered.
"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 in the lead up to their kidney/lung flare," Sloan said via email.
"This suggests that monitoring these symptoms — such as nightmares and changing mood — as well as the usual rashes and protein in the urine (due to inflammation in the kidneys), etc., may help with earlier flare detection in many patients, not just those who go on to develop major brain involvement," she said.
There is no reason for people with occasional nightmares or daytime dreams to be worried they may have an inflammatory autoimmune disease, said sleep disorder specialist Dr. Carlos Schenck, a professor and senior staff psychiatrist at the Hennepin County Medical Center at the University of Minnesota in Minneapolis.
"This study could alarm the general public into believing or worrying about whether they have lupus or a related autoimmune disorder if they have nightmares or hallucinations, which are what doctors call 'nonspecific symptoms,' meaning that a variety of conditions (medical and psychiatric) can manifest with these symptoms," Schenck said in an email.
It is indeed "perfectly normal" to have occasional nightmares and even daymares, or hallucinations, which "are also more common than we think," Sloan said.
"People shouldn't be afraid or embarrassed to talk about these symptoms," she said. "In some cases, reporting these symptoms earlier, even if they seem strange and unconnected, may lead to the doctor being able to 'join the dots' to diagnose an autoimmune disease."
