Nightmares could be an early warning sign of lupus and other autoimmune diseases

An increase in nightmares and hallucinations, sometimes called "daymares," might be early signs of autoimmune diseases like lupus. This finding comes from an international team led by researchers at the University of Cambridge and King’s College London.

Patients and doctors often hesitate to discuss mental health and neurological symptoms, especially if they don't realize these can be part of autoimmune diseases. Mel Sloan, one of the researchers, emphasized the need for greater recognition of these symptoms as early warning signs of a disease flare, a period when the disease worsens.

The study, published in eClinicalMedicine, surveyed 676 lupus patients and 400 clinicians. It also included detailed interviews with 69 people with systemic autoimmune rheumatic diseases (including lupus) and 50 clinicians. Lupus is an autoimmune inflammatory disease that affects many organs, including the brain.

Researchers asked patients about the timing of 29 neurological and mental health symptoms, such as depression, hallucinations, and loss of balance. They also asked patients to list the order of symptoms during a disease flare.

One common symptom was disrupted dream sleep. Three in five patients experienced this, and a third of them reported it over a year before the onset of lupus. Almost one in four patients reported hallucinations, but 85% of these did not appear until around the onset of the disease or later.

When interviewing patients, researchers found that three in five lupus patients and one in three with other rheumatology-related conditions reported increasingly disrupted dreaming sleep just before their hallucinations.

Related Stories

These nightmares were often vivid and distressing, involving scenarios of being attacked, trapped, crushed, or falling.

One patient from Ireland described their nightmares as "horrific, like murders, like skin coming off people, horrific…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.”

The term "daymares" for hallucinations often led to a "lightbulb" moment for patients, making them feel it was a less frightening and stigmatized word.

A patient from England said: “When you said that word daymare and as soon as you said that it just made sense, it’s like not necessarily scary, it’s just like you’ve had a dream and yet you’re sitting awake in the garden…I see different things, it’s like I come out of it and it’s like when you wake up and you can’t remember your dream and you’re there but you’re not there… it’s like feeling really disorientated, the nearest thing I can think of is that I feel like I’m Alice in Wonderland.”

Patients experiencing hallucinations were often reluctant to share their experiences. Many specialists said they had never considered nightmares and hallucinations as related to disease flares. Most agreed they would discuss these symptoms with their patients in the future, recognizing that these early flare symptoms could improve care and reduce clinic times by preventing flares at an earlier stage.

Lead author Dr. Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge stressed the importance of clinicians talking to their patients about these symptoms. She said, “Patients often know which symptoms are a bad sign that their disease is about to flare, but both patients and doctors can be reluctant to discuss mental health and neurological symptoms, particularly if they don’t realize that these can be a part of autoimmune diseases.”

Senior study author Professor David D’Cruz from King’s College London has long discussed nightmares with his lupus patients, suspecting a link with disease activity. This research provides evidence supporting his observations. He encouraged more doctors to ask about nightmares and other neuropsychiatric symptoms, which, though thought to be unusual, are actually very common in systemic autoimmunity. This could help detect disease flares earlier.

The importance of recognizing these symptoms is underscored by cases where patients were initially misdiagnosed or hospitalized with a psychotic episode or suicidal ideation, which was later found to be the first sign of their autoimmune disease.

One patient from Scotland shared their experience: “At 18 I was diagnosed with borderline personality disorder, and then 6 months later with lupus at 19, so it’s all very close together and it was strange that when my [borderline personality disorder] got under control and my lupus got under control was within 6 months.”

A nurse from Scotland noted: “I’ve seen them admitted for an episode of psychosis and the lupus isn’t screened for until someone says ‘oh I wonder if it might be lupus’...but it was several months and very difficult… especially with young women and it’s learning more that that is how lupus affects some people and it’s not anti-psychotic drugs they needed, it’s like a lot of steroids.”

Professor Guy Leschziner, a study author and neurologist at Guy’s and St Thomas’ Hospital, and author of The Secret World of Sleep, commented on the findings: "We have long been aware that alterations in dreaming may signify changes in physical, neurological, and mental health, and can sometimes be early indicators of disease. However, this is the first evidence that nightmares may also help us monitor such a serious autoimmune condition like lupus, and is an important prompt to patients and clinicians alike that sleep symptoms may tell us about impending relapse."

This research, funded by The Lupus Trust as part of the INSPIRE project (Investigating Neuropsychiatric Symptom Prevalence and Impact in Rheumatology patient Experiences), highlights the critical role of mental health and neurological symptoms as early indicators of autoimmune diseases. Recognizing these symptoms can lead to earlier detection and better management of diseases like lupus, ultimately improving patient outcomes.

Note: Materials provided above by The Brighter Side of News. Content may be edited for style and length.

Like these kind of feel good stories? Get the Brighter Side of News' newsletter.