Nightmares are unpleasant, but perfectly normal – for most. However, my colleagues and I have recently discovered that they can also presage autoimmune diseases, such as lupus.
Our study, published in The Lancet’s eClinicalMedicine journal, explored possible early warning signs of autoimmune disease flare-ups. We surveyed 676 patients with lupus and 400 doctors and carried out over 100 in-depth interviews.
We asked about the neurological and mental health symptoms patients experience, and when they happened in relation to when their disease first started. This included symptoms such as low mood, hallucinations, tremors and fatigue. We also asked if there was a usual pattern of symptoms for patients as they were about to get a flare-up (worsening symptoms).
Many patients could describe symptoms that happened just before their flares. Although patterns varied between different people, they were often similar in each person’s flare-ups. Patients often knew which symptoms were a sign that their disease was about to get worse.
Nightmares coming before autoimmune diseases have been found in other neurological diseases. Descriptions of flare-related nightmares in our study often involved being attacked, trapped, crushed or falling. Many were very distressing. One person described them as: “Horrific, like murders, like skin coming off people, horrific.”
Another important finding was that these nightmares often came before a disease flare-up, particularly in people who then had hallucinations as part of their disease pattern. This was more likely in people with lupus than the other rheumatological diseases such as inflammatory arthritis. This wasn’t unexpected as lupus is known to affect the brain in some cases.
Of the patients also reporting hallucinations, 61% of lupus patients and 34% with other autoimmune rheumatological diseases reported increasing disrupted sleep (mostly nightmares) just before their hallucinations..
Daymares
Our previous study found that over 50% of people rarely or never report mental health symptoms to their doctors. Although people were often more comfortable talking with our interviewers than their doctors, we used the word “daymare” to reduce the feeling of fear and stigma many people feel about the word “hallucination”.
Patients also felt that “daymare” was a good description as hallucination experiences were often described as dream-like states “in between asleep and awake” and “waking dreams”. Many patients described the word and description as a “lightbulb” moment for them:
[When] you said that word daymare and as soon as you said that it just made sense, it’s like not necessarily scary, it’s just like you’ve had a dream and yet you’re sitting awake in the garden … I see different things, it’s like I come out of it and it’s like when you wake up and you can’t remember your dream and you’re there but you’re not there … it’s like feeling really disorientated, the nearest thing I can think of is that I feel like I’m Alice in Wonderland.
Many people with lupus and other autoimmune diseases can have long and difficult journeys to diagnosis. More understanding of the vast range and type of symptoms these patients experience could lead to fewer misdiagnoses and better treatment. People whose first symptoms of autoimmune disease are psychiatric are particularly likely to be misdiagnosed and mistreated, as this rheumatology nurse explained:
I’ve seen [patients] admitted for an episode of psychosis and the lupus isn’t screened for until someone says, ‘Oh I wonder if it might be lupus’ … but it was several months and very difficult … especially with young women and it’s learning more that that is how lupus affects some people and it’s not antipsychotic drugs they needed, it’s like a lot of steroids.
Doctors are also short of time, particularly with complex diseases like lupus that can affect any body part. One rheumatologist we interviewed said that discussing these symptoms was not a priority..
I hear what you are saying … about the nightmares and hallucinations, and I believe it, but what I am saying is that you cannot conceivably include that as well as the routine management of lupus.
However, most doctors in the study said that they would now start asking about nightmares and other symptoms. Several reported back to the researchers that their patients were now regularly reporting these symptoms and it was helping with monitoring their disease.
Symptoms such as nightmares are not on the diagnostic lists, so patients and doctors often don’t discuss them. Relying on a doctor’s observation, blood tests and brain scans to diagnose diseases does not work for symptoms that are invisible and do not yet – and may never – show on testing.
Our study also highlights the importance of doctor-patient teamwork in identifying, monitoring and treating these often distressing symptoms..