By Melanie Sloan - Researcher, Public Health, University of Cambridge
Nightmares, though unpleasant, are usually perfectly normal occurrences. Most of the time, but not always: my colleagues and I recently discovered that they can also be early signs of certain autoimmune diseases (these diseases occur when the immune system "attacks" the body itself).
Nightmares can be a warning sign of a lupus flare-up.
Illustration image Pixabay
Our study, published in the journal
eClinicalMedicine of The Lancet, aimed to identify early signs of flare-ups (worsening of symptoms) in various autoimmune diseases, such as systemic lupus erythematosus or systemic autoimmune rheumatic diseases (arthritic conditions). We surveyed 676 lupus patients and 400 doctors, and conducted over 100 in-depth interviews.
We asked patients about their symptoms, both neurological and mental health-related (depression, hallucinations, tremors, fatigue...), and the timing of their onset in relation to the beginning of their disease. We also inquired if they had noticed a recurring symptom pattern prior to their flare-ups (in other words, worsening of symptoms).
Many patients were able to describe symptoms occurring just before their flare-ups. While patterns varied from person to person, these symptoms were often similar within the same individual during different flare-ups. Thus, patients often knew which symptoms signaled that their disease was about to worsen.
Our work revealed that these nightmares, often occurring before a disease flare-up, were particularly prevalent among those who later experienced hallucinations related to the disease. Furthermore, this likelihood was higher among lupus patients compared to those suffering from other rheumatic diseases, such as inflammatory arthritis (which wasn't very surprising, as it is known that lupus can sometimes affect the brain).
Among patients reporting hallucinations, 61% of those with lupus and 34% of those with other rheumatic autoimmune diseases indicated an increase in sleep disturbances (mainly nightmares) just before the hallucinations occurred.
The fact that nightmares could be an early warning sign of autoimmune diseases had already been described in studies of various
neurological diseases. In our study, the described nightmares related to flare-ups often involved attacks, traps, crushings, or falls. Many were extremely distressing. One person described them as: "Horrific, like murders, like skin peeling off people, horrifying."
Hallucinations, waking nightmares
Our
previous study revealed that over 50% of people rarely or never report their mental health symptoms to their doctors. The individuals we interviewed in this new research were more comfortable with our investigators than with their physicians; however, we chose to use the term "waking nightmare" instead of hallucination to reduce the stigma or fear some might feel.
Patients also found that "waking nightmare" accurately described their experiences, often depicting their hallucinatory states as dream-like "between sleep and wakefulness," or as "daydreams." Many patients even said that this term was a "revelation" for them:
"[When] you mentioned the term 'waking nightmare,' as soon as you said it, it made sense. It's not necessarily scary; it's like you're having a dream, yet you're sitting in the garden... I see different things, it's like I come out of it, it's like when you wake up and don't remember your dream, you're there, but at the same time, you're not there... It's like feeling really disoriented, it seems to me the best description is that I feel like Alice in Wonderland."
For many people with lupus and other autoimmune diseases, the path to diagnosis can be long and difficult. For this reason, it's important to improve understanding of the varied symptoms these patients experience. This could help improve diagnosis and treatment. People whose first symptoms of autoimmune disease are psychiatric are particularly likely to be misdiagnosed and mistreated, as explained by a rheumatology nurse:
"I've seen [patients] admitted for a psychosis episode, with their lupus going undetected. Until someone said, 'Oh, I wonder if this might actually be lupus'... Which took several months and was very difficult... Especially with young women... Learning that lupus affects some people like this and that they don't need antipsychotic medication, but rather a lot of steroids."
Understanding lupus
Doctors frequently lack time, which is another problem, especially when dealing with complex diseases like lupus, which can affect any part of the body. A rheumatologist we interviewed stated that discussing these symptoms was not a priority:
"I hear what you're saying... about nightmares and hallucinations, and I believe it, but what I'm saying is you cannot consider including this on top of the usual management of lupus."
Most of the doctors interviewed in our study, however, said they would now start asking their patients about possible nightmares and other symptoms. Several also reported that their patients are now regularly reporting these symptoms, which helps to better monitor their disease.
Our study also highlights the importance of teamwork between a doctor and their patient to identify, monitor, and treat these often-distressing symptoms. Indeed, some symptoms like nightmares are not listed in diagnostic criteria, so patients and doctors often don't discuss them together.
It's important to remember that relying solely on observations, blood tests, and brain scans for diagnosing diseases doesn't work when symptoms are invisible or don't manifest during testing protocols...