Horrible nightmares and ‘daymares’ linked to autoimmune disease

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The nightmares are intense and often horrific, and sometimes last all day.

“There is a serial killer chasing me and, for the last few years, I have the same one,” according to a Canadian patient. “It’s got my legs or something, I can still feel something on my legs even when I’m awake.”

Another English patient described nightmares “where I can’t breathe and someone is sitting on my chest.” Yet another shared stories of “really unpleasant” violent visions while sleeping.

“Horrible, like murders, like skin coming off people,” one Irish patient said of his nightmares. “I think it’s like when I’m overwhelmed, which could be due to lupus…so I think the more stressed my body is, the more vivid and worse the dream would be.”

Nightmares and “nightmares,” dreamlike hallucinations that appear upon waking, may be little-known signs of the onset of lupus and other systemic autoimmune diseases such as rheumatoid arthritis, according to a new study published Monday in the journal eClinicalMedicine.

Such unusual symptoms can also indicate that an established illness is about to get intensely worse or “flare” and require medical treatment, said the study’s lead author, Melanie Sloan, a researcher in the department. in Public Health and Primary Care from the University of Cambridge. UK.

“This is particularly the case in a disease like lupus, which is well known to affect multiple organs, including the brain, but we have also seen these types of symptoms in other rheumatologic diseases, such as rheumatoid arthritis, Sjögren syndrome and systemic sclerosis.” Sloan said in an email.

Lupus is a long-term disease in which the immune system goes haywire, attacking healthy tissues and causing inflammation and pain in any part of the body, including blood cells, brain, heart, joints and muscles, kidneys, liver and lungs. .

“Cognitive problems and many of these other neuropsychiatric symptoms that we’ve studied can have a huge influence on people’s lives, their ability to work, to socialize and just to live as normal a life as possible,” he said. she declared.

“These symptoms are often invisible and (currently) unverifiable, but that should not make them any less important for treatment and support.”

Jennifer Mundt, assistant professor of sleep medicine, psychiatry and behavioral sciences at the Feinberg School of Medicine at Northwestern University in Chicago, who was not involved in the study, said in an email that She was happy that the study focused on nightmares.

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According to experts, vivid and disturbing nightmares may be a sign of a new development of an autoimmune disease or an impending flare-up of an existing illness.

“Although nightmares are a very distressing problem in many medical and psychiatric conditions, they are rarely focused on except in the context of PTSD (post-traumatic stress disorder),” Mundt said.

“A recent study showed that 18% of people with long COVID have (frequent) nightmares, which compares to a prevalence in the general population of around 5%,” she said. “It is essential to hear the patient perspective so that research and clinical care can be guided by what is most important to patients themselves. »

Doctors and patients need to know

Although research in the area is rather new, a March 2019 study found that patients with inflammatory arthritis and other autoimmune and inflammatory diseases also suffered from nightmares and other REM sleep disorders such as sleep paralysis. REM is short for rapid eye movement, the phase of sleep in which people dream and information, information, and experiences are consolidated and stored in memory.

In this study, a 57-year-old man recalled being “threatened by wild birds of prey” in his nightmares, while a 70-year-old woman dreamed that her nephew was in grave danger but she could do nothing for help.

The new study surveyed 400 doctors and 676 people living with lupus and also conducted detailed interviews with 50 clinicians and 69 people living with systemic autoimmune rheumatic diseases, including lupus.

Researchers found that 3 in 5 patients with lupus and 1 in 3 patients with other rheumatology-related illnesses had increasingly vivid and distressing nightmares just before their hallucinations. These nightmares often involved falling, being attacked, being trapped, crushed, or killed.

“I rode a horse and cut people with my sword. One of them was someone attacking me and I ended up slitting his throat,” the English patient said.

“I am not a violent person at all. I don’t even kill an insect,” the patient continued. “And I came to the conclusion that it was probably me fighting my own (autoimmune) system. …I’m probably just attacking myself, that’s the only thing I can logically understand.

Systemic autoimmune diseases often present with a series of symptoms, called prodromes, which appear as signs of a sudden and potentially dangerous worsening of the disease. In the case of lupus, for example, headaches, increased fatigue, painful and swollen joints, rashes, dizziness, and fever without infection are well-known signs of an impending flare-up.

Recognizing these warning signs is important, Sloan said, because they allow for “earlier detection and therefore treatment of flares, some of which can cause organ damage and even be fatal in lupus patients.”

However, unique warning symptoms such as nightmares and nightmares are not part of the diagnostic criteria for lupus or other diseases, Sloan said. The study found that doctors rarely ask about such experiences, and patients often avoid telling their doctors.

“We strongly encourage more doctors to ask about nightmares and other neuropsychiatric symptoms – considered unusual, but actually very common in systemic autoimmunity – to help us detect disease flares earlier,” he said. said the study’s lead author, David D’Cruz, consultant rheumatologist. at Guy’s Hospital and Kings College London.

On the surface, it would make sense that neurological manifestations such as nightmares would occur if the autoimmune disease affects the brain, which lupus often does, Sloan said. But that’s not what the study found.

“Interestingly, we found that lupus patients who were classified as having involvement of organs other than the brain, such as the kidneys or lungs, often also reported various neuropsychiatric symptoms before their renal/pulmonary flare,” he said. Sloan said via email. .

“This suggests that monitoring these symptoms – such as nightmares and mood changes – as well as habitual skin rashes and protein in the urine (due to inflammation of the kidneys), etc., can help detect earlier flare-ups in many patients, not only. those who develop major brain damage,” she said.

However, there’s no reason for people with nightmares or occasional daydreams to worry about an autoimmune inflammatory disease, said sleep disorders specialist, professor and senior psychiatrist Dr. Carlos Schenck. at the University of Minnesota Hennepin County Medical Center in Minneapolis.

“This study could lead the general public to believe or worry about whether they have lupus or a related autoimmune disease if they experience nightmares or hallucinations, what doctors call “symptoms non-specific,” meaning a variety of conditions (medical and psychiatric) can manifest with these symptoms,” Schenck said in an email.

It is indeed “completely normal” to have occasional nightmares, even nightmares, or hallucinations, which “are also more common than you think,” Sloan said.

However, if these are intense, upsetting and occur at the same time as other symptoms such as extreme fatigue, headaches and other signs of autoimmune diseases, they “should be discussed with a doctor “Sloan said.

“People should not be afraid or embarrassed to talk about these symptoms,” she said. “In some cases, reporting these symptoms early, even if they seem strange and unrelated, can allow the doctor to ‘join the dot’ to…

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