Always tired no matter how much you’ve slept? It might not be laziness… it could be symptom of a rare condition

A new study has revealed what it feels like to live with chronic fatigue that no amount of sleep can replace.

The condition, known as idiopathic hypersomnia (IH), is defined by the NHS as ‘when a person sleeps for a long time and wakes up feeling confused, irritable and not rested’.

Hypersomnolence UK estimates there are 2,500 confirmed cases of IH in the UK, with thousands more currently undiagnosed or unaware that their insatiable desire for sleep is abnormal.

The underlying cause of IH has never been formally identified and is believed to be neurological in origin.

People with this condition They experience excessive sleepiness during the day, often sleep for long periods throughout the night, complain of fatigue, are extremely groggy when they wake up (sleep inertia), and may take long naps but wake up just as tired.

This is where the condition differs from narcolepsy, where people need to sleep throughout the day but wake up feeling refreshed. No amount of sleep is sufficient for people with IH.

Previous studies have focused on what doctors and researchers know about IH, but a team led by Takeda Pharmaceuticals’ Sarah Bermingham has now taken a deep dive into patients’ lived experiences.

Their goal was to improve the level of care provided by paramedics, inspire new avenues of treatment, and increase general awareness of the disorder.

Published in medical journal PLoSresearchers looked at the content of 346 social media postscommunity forums, blogs, videos and Podcasts created by 123 people who self-identify as IH between 2012 and 2022.

The writers and creators Ms. Bermingham and her team studied were mostly women (87 percent), ages 16 to 60, and living in the United States, Australia, Europe and Canada.

The majority claimed they needed at least 10 hours of sleep a night to function, while some said they needed at least 15 hours of sleep.

The NHS recommends adults get between seven and nine hours of sleep per night for optimal health.

Healthy, quality sleep levels protect against many diseases and life-limiting conditions, including obesity, diabetes, heart disease and even some cancers.

The team evaluated the creators’ shares examined his experiences and grouped them under 10 different themes.

These are: long-term sleep, Never feeling fully awake, unremitting drowsiness, non-restorative sleep, difficulty waking, automatic behaviors, microsleeps and prolonged sleeps, cognitive difficulties, limited physical energy, and vivid dreams and hypnagogic hallucinations.

As part of their findings, the team shared some typical statements people say about living with IH, which may resonate with others who are currently undiagnosed.

People with IH claim no amount of sleep can change their fatigue

One of them said: ‘Another way to describe it is that when you are given an anesthetic you are told to stay awake. We feel like this all day long.’

Another said: ‘The feeling of sleepiness becomes so strong that I literally feel like I can’t go on living, so my whole world revolves around this need to sleep.’

‘No matter how much I sleep, I never feel rested… I’m constantly in a state of sleep. ‘I never feel fully awake,’ wrote another. ‘I’m tired and have a foggy brain, I can’t think clearly and I get confused quite easily as I feel very sleep deprived.

‘Although technically I’m not sleep deprived because I get plenty of quality sleep. No matter how much I have, sleep never, ever makes me feel renewed.’

Researchers took a similar approach to defining the ‘life effects’ caused by IH, identifying seven distinct areas: Ppsychological and emotional well-being, activities of daily living, injuries, relationships, work and school, physical health, health and treatment burden.

Some of the experiences shared included: ‘I can’t exercise – I just don’t have the time or energy’; and ‘I even had to make the heartbreaking decision not to have children because I was too sick to care for them.’

Another person said IH kept them from being good friends.

They wrote: ‘We’re called weird because we’re invisible… but they can’t see that we want it so bad… but as we get ready, our bodies give up on us like cars abandoning you on the side of the road.’

People with IH report difficulty in maintaining working hours and social lives

The study authors noted: ‘IH has a profound impact on quality of life; It significantly impairs emotional well-being, daily functioning, work productivity, career choices, social participation and personal relationships.

Moreover, this affects their loved ones and colleagues, who have to deal with fatigue, often poor mental health, and time constraints due to the amount of sleep needed.

Although the research team had many common experiences to examine, they noticed a common theme was that they were not taken seriously, and when they were taken seriously, the answer was usually some form of stimulant medication.

It is important to note that the authors note some limitations in this study. Data first SGOPE (self-generated patient experience), meaning that diagnoses must be self-reported.

The researchers had no way to verify the demographics or clinical history of the study subjects, but noted that they were the type of people who would feel comfortable sharing their experiences online.