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Disrupted sleep with graphic nightmares, as well as hallucinations could be a sign of autoimmune disease flare-ups. Image credit: Peter Dazeley/Getty Images.
  • Researchers from the University of Cambridge and King’s College London have found that an increase in nightmares and hallucinations, sometimes termed ‘daymares,’ may signal the early stages of autoimmune diseases like lupus.
  • Their new study surveyed and interviewed hundreds of patients and clinicians, revealing how these symptoms often precede disease flares.
  • Recognizing these early warning signs could improve patient care and prevent severe flare-ups by allowing for timely intervention.

In a recent study, published in eClinicalMedicine, a team of researchers from the University of Cambridge and King’s College London, both in the United Kingdom, surveyed 676 individuals with lupus and 400 clinicians who provided care for people with this condition.

They also conducted in-depth interviews with 69 individuals living with systemic autoimmune rheumatic diseases — including lupus — and 50 clinicians.

Lupus is an autoimmune inflammatory disease that affects multiple organs, including the brain.

The study asked patients about the timing of 29 neurological and mental health symptoms, such as depression, hallucinations, and loss of balance.

During interviews, the participants were also asked to list the typical order in which their symptoms appeared during a flare-up.

One of the more common symptoms reported was disrupted dream sleep, experienced by three out of five individuals, with a third of them noting this symptom appeared more than a year before the onset of lupus.

Just under one in four people reported experiencing hallucinations, but for 85% of them, this symptom did not manifest until around the onset of the disease or later.

However, interviews revealed that three in five lupus patients and one in three individuals with other rheumatology-related conditions experienced increasingly disrupted dream sleep — typically vivid and distressing nightmares — just before their hallucinations began.

Lead author Melanie Sloan, PhD, DPH, from the Department of Public Health and Primary Care at the University of Cambridge explained the key findings to Medical News Today.

She told us that:

“One of the most important findings is that these types of neuropsychiatric symptoms could be an early warning system that people’s autoimmune disease is about to flare. This included symptoms such as nightmares that aren’t on any diagnostic criteria or on many doctors radars, yet experienced by many patients with lupus and the other systemic rheumatic diseases.”

“What we found was that there was a lot of similarity in the symptoms that each person experienced just before / at the start of their flare ups for each subsequent flare up they had,” Sloan highlighted.

These nightmares often involved scenarios of being attacked, trapped, crushed or falling.

A participant from Ireland described their nightmares as horrific and graphic, involving scenes such as murders and people’s skin coming off.

The study interviewers discovered that referring to hallucinations as “daymares” often triggered a “lightbulb” moment for patients, as they found this term to be less frightening and stigmatizing.

A participant from England explained that the term “daymare” immediately made sense to them. They described it as not necessarily scary but similar to having a dream while being awake, such as sitting in the garden and seeing different things.

Patients experiencing hallucinations were hesitant to discuss them, and many specialists had not previously considered a link between nightmares, hallucinations and disease flare-ups.

“Patients often knew which was a ‘bad’ symptom for them that meant that their disease was about to flare [up], yet many of these symptoms are not discussed with doctors. Sometimes this is because patients and doctors don’t know that these mental health and neurological symptoms are a very common part of these autoimmune diseases, particularly with lupus, which is well known to impact the brain.”

– Melanie Sloan, PhD, DPH

“So the patients don’t think to mention that they have been having nightmares, or their hands go numb, or they feel dizzy, or they have a sudden change in mood, or any combination of the many possible symptoms, and the doctors don’t think to ask,” Sloan noted.

Sloan explained how, in some cases, “patients are reluctant to report mental health symptoms for fear of the stigma.”

“A particular problem is that many patients with rheumatological and other chronic diseases have been misdiagnosed in the past with psychiatric or psychological problems, so these types of symptoms can be particularly hidden from doctors for fear that they will be misattributed again,” she pointed out.

These incidents were later identified as early indicators of their autoimmune disease.

Most specialists agreed to discuss these symptoms with their patients in the future, recognizing that identifying these early signs of flare-ups could serve as an “early warning system.”

“We would strongly encourage patients and doctors to work together to see if there is a similar progression of symptoms for that patient in each flare-up. Then they both will be able to take action when the pattern starts again which should lead to earlier detection and therefore earlier treatment. Lupus in particular can cause organ damage, including the brain, and even death in some cases, so earlier detection is vital,” Sloan told us.

Guy Leschziner, PhD, one of the study authors, a neurologist at Guys’ and St Thomas’ NHS Foundation Trust and author of The Secret World of Sleep, pointed out that “the mechanisms by which nightmares may be precipitated by lupus flare-ups is at the current time unknown.”

“Speculatively, we know that inflammation or infection anywhere in the body can give rise to nightmares, as in ‘fever dreams.’ This may be a diffuse effect of chemicals mediating inflammation within the body, called cytokines, on the brain, and resulting in less stable REM sleep. An alternative possible explanation is direct inflammation of the brain itself disrupting the brain circuits that regulate sleep and dreaming, in the midbrain and brainstem.”

– Guy Leschziner, PhD

James Giordano, PhD, professor of neurology and biochemistry from the Pellegrino Center at Georgetown University Medical Center, not involved in this research, told MNT that “this is a well-conceived and -performed study that sought to examine if, and to what extent certain psychiatric signs and symptoms presented in advance of either formal (first) diagnosis or flare-ups of a neuropsychiatric (NP) variant of systemic lupus erythematosus (SLE).”

“Given that the pathologic autoimmune changes of NPSLE are focal to the brain, it is important that the present study defined that NP signs and symptoms often precede either initial diagnosis, or subsequent flare ups of SLE,” he told us.

Giordano further pointed out that “this study notes that formal diagnosis of SLE is often a process of elimination, which in some cases, can take considerable time.”

“The identification of psychiatric features, in combination with, or in advance of clinically-relevant presentation of other pathologic signs and symptoms may be an important marker to aid in both initial diagnosis, and assessment and prognosis of potential exacerbations of the disease.”

– James Giordano, PhD

“Of course, not every presentation of psychiatric signs and symptoms should be considered as indicative of (NP)SLE, and this is particularly true of individuals who have a durable history of psychiatric issues,” he cautioned.

“However, the occurrence of psychiatric features in individuals with other rheumatological signs, symptoms, and/or conditions may be of valuable consideration toward [either] establishing the differential diagnosis of (NP)SLE, or in clinically predicting flare-ups in those patients who have been diagnosed with the disease,” said Giordano.

“[T]hese findings may serve to further mitigate individuals’ hesitance to report psychiatric signs and symptoms for fear of stigmatization,” he also added.

Such symptoms could also be a sign of many other autoimmune conditions, Sloan emphasized.

The study author highlighted that, “although we focused on lupus for this study, we also interviewed people with all the autoimmune rheumatic diseases — for example, Sjogrens, vasculitis, and systemic sclerosis — and many of them also experience these neuropsychiatric symptoms in their flares.”

“This is a very under-researched area, and more medical and societal understanding would help give patients the confidence to report these symptoms if they realise that they can be as much a part of their diseases as the more commonly understand joint pain and other physical symptoms.”

– Melanie Sloan, PhD, DPH