Autoimmune Disease Diagnoses and Flares May Be Preceded by Nightmares and Hallucinations
These findings suggest that in many people, psychiatric or neurological symptoms may be among the first clues that a person is about to have a flare, says lead author Melanie Sloan, PhD, a doctor of public health in the department of public health and primary care at the University of Cambridge in England.
Recognizing those symptoms early may stop flares from progressing, or help people get an accurate diagnosis sooner, says Dr. Sloan.
Psychiatric Symptoms Can Precede an Autoimmune Disease Diagnosis
People who go on to develop autoimmune diseases, including multiple sclerosis (MS) and rheumatoid arthritis (RA), can experience psychological symptoms — like depression, agitation, feelings of “unreality,” and poor sleep — before the more typical signs of such conditions, says Sloan.
For the new research, investigators surveyed 676 people living with lupus (an inflammatory disease in which a person’s immune system attacks their own tissues and organs) and 400 healthcare providers. They also conducted detailed interviews with 69 people living with systemic autoimmune diseases, including lupus, and 50 clinicians.
The survey included questions about the timing of 29 neurological and mental health symptoms, including depression, hallucinations, and loss of balance.
Fatigue and low mood were frequently cited, along with disrupted dream sleep, which was experienced by 3 out of 5 participants — one-third of whom reported having the symptom over a year before the onset of lupus.
Just under 1 in 4 patients reported hallucinations, though in most cases (85 percent), the symptom didn’t occur until around the onset of disease or later.
Interestingly, the study interviewers found using the term “daymares” rather than “hallucinations” often led to participants to have an “aha” moment about their experiences — in part because they felt like it was a less frightening and stigmatized word.
People Recounted Vivid Dreams of Violence and Feeling Attacked
During the interviews, researchers found a pattern of disrupted dreaming sleep. About 3 in 5 people with lupus and one-third with other rheumatic conditions reported unusually vivid and distressing nightmares that happened just before their hallucinations.
Here are some of those experiences those people described in the interviews:
A person 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.”
People also described frequent dreams where they felt crushed 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,” said one U.K. interviewee.
Hallucinations or Mental Health Symptoms in Lupus Sometimes Leads to Misdiagnosis
In the interviews with specialists, many said they had never considered nightmares and hallucinations as being related to disease flares, though after this study, most agreed that it could help with diagnosis and treatment.
A lack of awareness doesn’t just postpone a correct diagnosis — it could actually mean that people are misdiagnosed. Some people reported they had initially been misdiagnosed or even hospitalized for a psychotic episode or suicidal ideation, which was only later found to be the first sign of their autoimmune disease.
A nurse from Scotland described more than one occasion in which people, especially young women, were admitted to the hospital for an episode of psychosis that was not linked to a lupus diagnosis until months later.
Medication Data Could Make the Results Stronger
This study is limited, in part because it relied on what people could remember and report about their experiences, and it didn’t include some important details about medications they may have been taking, says Dafna Gladman, MD, a professor of medicine at the University of Toronto and researcher in lupus, psoriatic arthritis, and rheumatoid arthritis. Dr. Gladman was not involved in the study.
Right now, the mechanism that could be causing these symptoms in people with lupus or other autoimmune conditions isn’t clear, she says.
Patients with lupus often have sleep disorders, and when that happens other issues may arise, says Gladman.
Bad Experiences and Mental Health Stigmas Keep Some People Quiet About Their Symptoms
“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,” says Sloan.
The stigma around mental health, coupled with how frightening some of these experiences can be, mean many people stay quiet about some of their symptoms. But that’s something the researchers hope to change with education and empathy.
“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 Sloan.
The persisting damage of these types of misdiagnoses to a patient’s self-worth and trust in doctors is often severe, and they can be reluctant to share any symptoms that may lead to a misdiagnosis again — especially mental health and neurological symptoms like nightmares, depression, and hallucinations — so these symptoms may be very under-reported.
“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 Sloan.
How Could These Findings Be Used to Improve Care?
In patients with lupus, flares can lead to organ damage and even death, so early detection is key, says Sloan.
“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 found individuals often had a similar pattern of progression of symptoms in each of their flares, so this could be used to monitor their disease, says Sloan.
“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.
This can include symptoms that aren’t on the standard diagnostic lists like nightmares and a “feeling of unreality,” and many of these symptoms will not have corresponding objective evidence, says Sloan.
“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.
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