The onset of nightmares and dreamlike hallucinations while awake could be an early warning sign of autoimmune diseases such as lupus, or a symptom that precedes a relapse, according to a new study published in eClinicalMedicine.
This research suggests that psychiatric or neurological symptoms may be among the earliest indicators that a person is about to experience a flare-up, notes lead author Melanie Sloan, PhD, a public health expert at the University of Cambridge’s Department of Public Health and Primary Care in England.
“Recognizing those symptoms early may stop flares from progressing, or help people get an accurate diagnosis sooner,” says Dr. Sloan.
Psychiatric Symptoms May Signal Onset of Autoimmune Disease
People who eventually develop autoimmune diseases, including multiple sclerosis (MS) and rheumatoid arthritis (RA), often experience psychological symptoms such as depression, agitation, feelings of “unreality,” and poor sleep before the more conventional signs of these conditions appear, according to Dr. Sloan.
For this research, investigators surveyed 676 people living with lupus, an inflammatory disease in which the immune system attacks its own tissues and organs, as well as 400 healthcare providers.
They also conducted detailed interviews with 69 individuals suffering from systemic autoimmune diseases, including lupus, and 50 clinicians. The survey explored the timing of 29 neurological and mental health symptoms, including depression, hallucinations, and loss of balance.
Commonly reported symptoms included fatigue and low mood, with disrupted dream sleep being noted by three out of five participants. Interestingly, one-third of these individuals reported experiencing this symptom over a year before the onset of lupus.
Additionally, nearly one in four patients reported hallucinations, though in 85% of cases, this symptom manifested around the time of disease onset or later.
A notable finding from the interviews was that the term “daymares” often led to an “aha” moment for participants, as it was perceived as less frightening and stigmatizing than “hallucinations.”
Individuals Report Intense Nightmares of Violence and Feeling Threatened
During the interviews, researchers identified a pattern of disrupted dreaming sleep.
Approximately three out of five lupus patients and one-third of those with other rheumatic conditions reported unusually vivid and distressing nightmares that preceded their hallucinations.
These experiences included nightmares of violence and feelings of being attacked.
Someone 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.”
Another individual from the UK recounted frequent dreams of being crush or trapped: “A lot about falling and not landing, ones where I can’t breathe and where someone is sitting on my chest, being somewhere scary and not being able to get out.”
Hallucinations and Mental Health Symptoms in Lupus Often Result in Misdiagnosis
The interviews with specialists revealed that many had not previously considered the connection between nightmares and hallucinations and disease flares.
However, most agreed that these findings could assist in diagnosis and treatment. A lack of awareness not only delays a correct diagnosis but can also lead to misdiagnosis. Some patients reported being initially misdiagnosed or even hospitalized for psychotic episodes or suicidal ideation, which were later found to be early signs of their autoimmune disease.
A nurse from Scotland recounted multiple instances where young women were admitted for psychotic episodes, only to be diagnosed with lupus month later.
Inclusion of Medication Data Could Strengthen Results
Dafna Gladman, MD, a professor of medicine at the University of Toronto and an expert in lupus, psoriatic arthritis, and rheumatoid arthritis, noted that the study’s reliance on self-reported experiences is a limitation.
The study did not include important details about medications the participants might have been taking.
“Right now, the mechanism that could be causing these symptoms in people with lupus or other autoimmune conditions isn’t clear,” she said. Dr. Gladman was not involved in the study.
Patients with lupus often experience sleep disorders, which can lead to other issues, adds Dr. Gladman.
Negative Experiences and Mental Health Stigmas Silence Some Patients About Their Symptoms
Dr. Sloan emphasized the need for clinicians and patients to discuss nightmares and hallucinations openly. “Nightmares and hallucinations are much more common in lupus and other systemic rheumatic diseases than previously realized, and we need to find ways that clinicians and patients can feel comfortable discussing these,” she says.
The stigma and mental health and the frightening nature of these experiences often lead patients to remain silent about their symptoms. This study aims to change that through education and empathy.
Dr. Sloan highlighted the difficult diagnostic journeys many patients endure, often being misdiagnosed with psychiatric conditions before receiving the correct diagnosis. The lasting impact of these misdiagnoses on patients’ self-worth and trust in doctors can make them reluctant to report symptoms again, especially psychiatric and neurological ones.
“It’s important to remember that many of these patients with lupus and other systemic rheumatic diseases have experienced long and difficult diagnostic journeys. Some will have been misdiagnosed initially and told that their symptoms were a psychiatric or psychological problem before the dots were joined up and the correct diagnosis was made,” says Dr. Sloan.
Dr. Sloan believes these findings could significantly improve patient care.
“There is also stigma and fear in general about psychiatric symptoms, so doctors need to approach discussing this very empathetically, nonjudgmentally, and normalize these symptoms,” says Dr. Sloan.
How Do These Findings Help Improve Care?
In lupus patients, flares can lead to organ damage and even death, so early detection is crucial.
“Knowing that multiple different neurological and psychiatric symptoms could come before symptoms that are more commonly understood to be a part of these diseases such as rashes and joint pains should also help in earlier diagnosis,” she says.
Investigators observed that individuals often follow a similar symptom progression patter in each flare, which could be used to monitor their disease. Dr. Sloan suggests that patients work with their doctors to document their symptom progression, including non-standard symptoms like nightmares and feelings of unreality, in their medical records or care plans.
“We would suggest that every patient works with their doctor to write down their progression of symptoms and have this recorded on their medical records or in a care plan so that earlier action can be considered before the next flare progresses,” she says.
“Nightmares and hallucinations don’t show on blood tests or brain scans but that doesn’t mean that they aren’t a part of the disease and very relevant to monitoring that patient’s disease,” she says.
Recommended For You
