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Nightmares are unpleasant, but perfectly normal for most people. However, a recent study found that they can also signal autoimmune diseases like lupus.
The study, published in The Lancet’s EClinicalMedicine journal, explored potential early warning signs of an autoimmune disease flare. Researchers surveyed 676 lupus patients and 400 doctors and conducted more than 100 in-depth interviews.
Researchers asked patients about the neurological and mental health symptoms they experienced, and when they occurred in relation to when their disease first started. This included symptoms such as low mood, hallucinations, tremors and fatigue. The researchers also asked whether there was a common pattern of symptoms for patients as they neared a flare-up (worsening of symptoms).
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Many patients could describe symptoms that occurred just before their flare. Although the patterns varied among different people, they were often similar in each person’s flare. Patients often knew which symptoms were a sign that their disease was about to get worse.
Nightmares that precede autoimmune diseases have also been found in other neurological diseases. Descriptions of flare-related nightmares in the study often included being attacked, trapped, crushed, or falling. Many were extremely disturbing. One person described them as: “horrible, like murders, like people’s skin coming off, horrific.”
Another important finding was that these nightmares often occurred before the disease progressed, particularly in people who then experienced hallucinations as part of their disease pattern. This was more likely to occur in people with lupus than in those with other rheumatological diseases such as inflammatory arthritis. This was not unexpected as lupus is known to affect the brain in some cases.
Of the patients reporting hallucinations, 61% of lupus patients and 34% of those with other autoimmune rheumatological diseases reported increased sleep disruption (mostly nightmares) just prior to the hallucinations.
dream Day
A previous study found that more than 50% of people rarely or never tell their doctors about mental health symptoms. Although people are often more comfortable talking to interviewers than to their doctors, the researchers used the word “demur” to reduce the sense of fear and stigma that many people feel about the word “hallucination.” Are.
Patients also felt that “daydreaming” was a good description because hallucinatory experiences were often described as a dream-like state “between sleep and waking” and “between waking dreams.” Many patients described this term and description as a “lightbulb” moment for them: “[When] You said that word daydream and as soon as you said that it means something, it’s not necessarily scary, it’s just like you’ve had a dream and yet you’re sitting in the garden awake… I see different things, it’s like I come out of it and it’s like when you wake up and you don’t remember your dream and you’re there but you’re not there… it’s like feeling really disoriented, the closest thing I can think of is that I feel like I’m Alice in Wonderland.”
Many people with lupus and other autoimmune diseases may have to go through a long and difficult journey to get a diagnosis. A greater understanding of the wide range and type of symptoms experienced by these patients may reduce misdiagnosis and lead to better treatment. People whose first symptoms of an autoimmune disease are psychiatric are particularly likely to be misdiagnosed and mistreated, as this rheumatology nurse described: I’ve seen [patients] Got admitted for an episode of psychosis and wasn’t investigated for lupus until someone said, ‘Oh, I wonder if it could be lupus’… but that went on for many months and was very difficult… particularly with young women and it turned out that’s how lupus affects some people and they didn’t need antipsychotic drugs, it’s more like a lot of steroids.
Doctors are also short on time, especially for complex diseases like lupus that can affect any part of the body. One rheumatologist said discussing these symptoms was not a priority.
“I hear what you’re saying … about the nightmares and hallucinations, and I believe it, but what I’m saying is that you can’t incorporate this along with the routine management of lupus.”
However, most doctors in the study said they would now start asking about nightmares and other symptoms. Many told researchers that their patients are now regularly reporting these symptoms and that this is helping them monitor their illness.
Symptoms such as nightmares are not on the diagnostic list, so patients and doctors often do not discuss them. Relying on doctor’s observations, blood tests and brain scans to diagnose diseases does not work for symptoms that are invisible and do not yet—and may never—show up on a test.
The study also highlights the importance of doctor-patient teamwork in identifying, monitoring, and treating these often distressing symptoms.
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