Waking up from nightmares not only disturbs sleep and causes fatigue; having hallucinations during the day is not only scary. Both could herald the onset of autoimmune diseases such as lupus erythematosus (SLE), according to an international team led by researchers at the University of Cambridge and King’s College London.
The importance of recognizing these symptoms was highlighted by reports that some patients had initially been misdiagnosed or even hospitalized with a psychotic episode and/or suicidal ideation, which was only later found to be the first sign of their autoimmune disease.
The researchers argue that there needs to be greater recognition that these types of mental health and neurological symptoms can act as an early warning sign that an individual is approaching a ‘flare’, where their disease worsens for a period.
Sleep disruptions
In a study published today in eClinicalMedicine under the title “Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE,” the British researchers surveyed 676 people living with SLE in which one’s immune system attacks your own tissues and organs; the resulting inflammation can affect many different body systems. including the joints, brain, skin, kidneys, blood cells, heart and lungs. The team also followed 400 specialist physicians and conducted detailed interviews with 69 people living with systemic autoimmune rheumatic diseases (including SLE) and 50 clinicians.
In the study, the team asked patients about the timing of 29 neurological and psychological symptoms they had including depression, hallucinations and loss of balance. In interviews, patients were also asked if they could list the order that symptoms usually occurred when their disease flared up.
One of the more common symptoms reported was disrupted dream sleep, experienced by three out of every five patients, a third of whom reported this symptom appearing over a year before onset of SLE.
Just under one in four patients reported hallucinations, though for 85% of these the symptom did not appear until the onset of disease or later. When the researchers interviewed the patients, however, they found that 60% of lupus patients and a third with other rheumatology-related conditions reported increasingly disrupted dreaming sleep – usually vivid and distressing nightmares – just before their hallucinations. These nightmares were often vivid and distressing, involving being attacked, trapped, crushed, or falling.
A patient from Ireland described her nightmares as “horrific, like murders, like skin coming off people. It’s like when I’m overwhelmed, so I think the more stress my body is under, then the more vivid and bad the dreaming would be.”
The study interviewers found that using the term “daymares” to describe hallucinations because they felt that it was a less frightening and stigmatized word. A patient from England said: “When you said that word ‘daymare,’ it just made sense and was not necessarily scary. It was like having a dream while sitting awake in the garden. I come out of it and can’t remember the dream. I feel really disorientated, as if I’m Alice in Wonderland.”
Patients experiencing hallucinations were reluctant to share their experiences, and many specialists said they had never considered nightmares and hallucinations as being related to disease flares. Most said they would talk to their patients about nightmares and hallucinations in future, agreeing that recognizing these early symptoms could provide an “early warning system” helping them to improve care and even reduce clinic times by averting flareups at any earlier stage.
Lead author Dr. Melanie Sloan from the public health and primary care department at the University of Cambridge said: “It’s important that clinicians talk to their patients about these types of symptoms and spend time writing down each patient’s individual progression of symptoms. Patients often know which symptoms are a bad sign that their disease is about to flare, but both patients and doctors can be reluctant to discuss mental health and neurological symptoms, particularly if they don’t realize that these can be a part of autoimmune diseases.”
Senior study author Prof. David D’Cruz from Kings College London said: “For many years, I have discussed nightmares with my lupus patients and thought that there was a link with their disease activity. This research provides evidence of this, and we are strongly encouraging more doctors to ask about nightmares and other neuropsychiatric symptoms – thought to be unusual, but actually very common in systemic autoimmunity – to help us detect disease flares earlier.”