Terrifying nightmares could be a sign of a rare incurable disease

One patient dreams about 'murders, and skin coming off people'.

An increase in vivid or distressing nightmares – including being attacked or crushed – could be a sign of lupus or other autoimmune diseases, according to new research.

Hallucinations, or ‘daymares’, could also be a signal the onset of the incurable conditions.

Researchers are calling for greater recognition of how mental health and neurological symptoms can act as early warning symptoms for a flare-up of symptoms in patients with autoimmune diseases, including lupus.

Lupus is an incurable condition that causes fatigue, joint pain and skin rashes. Lady Gaga, Selena Gomez and Katherine Ryan are among those living with the condition.

The team, from University of Cambridge and King’s College London, surveyed 676 people living with lupus and 400 clinicians, alongside detailed interviews with 69 people living with systemic autoimmune rheumatic diseases, including lupus, and a further 50 clinicians.

While just under a quarter of patients reported hallucinations, three in five lupus patients reported distressing nightmares, often including being attacked, trapped, crushed or falling.

One patient 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.’

The team also found that using the term ‘daymares’ instead of hallucinations helped patients better understand their symptoms, feeling it was a less frightening and stigmatised word.

‘A patient from England said: “[When] you said that word daymare, as soon as you said that it just made sense. It’s 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.’

The study found that patients experiencing hallucinations were reluctant to talk about them, while many specialists had never connected nightmares or hallucinations with disease flares.

Following the results of the survey, most said they would talk to their patients about them in future, and that nightmares or hallucinations could offer an ‘early warning system’.

Lead author Dr Melanie Sloan, from 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 realise that these can be a part of autoimmune diseases.’

The link is of particular significance given reports of patients being misdiagnosed or even hospitalised with a psychotic episode when in fact they were in the early stages of an autoimmune disease.

One patient from Scotland said: ‘At 18 I was diagnosed with borderline personality disorder, and then six months later with lupus at 19, so it’s all very close together – and it was strange that when my [borderline personality disorder] got under control and my lupus got under control, [it] was within six months [of each other].’

A nurse from Scotland said: ‘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 anti-psychotic drugs they needed, it’s a lot of steroids.’

Professor Guy Leschziner, a study author and neurologist at Guys’ and St Thomas’ hospital, and author of The Secret World of Sleep, said: ‘We have long been aware that alterations in dreaming may signify changes in physical, neurological and mental health, and can sometimes be early indicators of disease. 

‘However, this is the first evidence that nightmares may also help us monitor such a serious autoimmune condition like lupus, and is an important prompt to patients and clinicians alike that sleep symptoms may tell us about impending relapse.’

A study in 2022 revealed a link between bad dreams and dementia, finding that bad dreams could become more common several years or even decades before thinking and memory problems set in.

The study is published in the journal EClinicalMedicine.