Sleep problems are one of the most common complaints among people with Myalgic Encephalomyelitis (ME).
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| Sleeping Girl, Domenico Fetti, c. 1615 |
For a person with Myalgic Encephalomyelitis (ME), poor sleep is a major source of intensified symptoms.
Sleep deprivation impacts every physiological function in the body. Individuals with
ME are differentially affected by poor and unrefreshing sleep. Sleep disturbances and insomnia are very common, with a pattern of restlessness and difficulty in falling and remaining asleep. Regardless of the number of hours slept, sleep is usually not restorative in ME, meaning that people wake up exhausted and without energy rather than refreshed. This is likely due to an insufficient amount of the deepest and most restorative type of sleep.
ME are differentially affected by poor and unrefreshing sleep. Sleep disturbances and insomnia are very common, with a pattern of restlessness and difficulty in falling and remaining asleep. Regardless of the number of hours slept, sleep is usually not restorative in ME, meaning that people wake up exhausted and without energy rather than refreshed. This is likely due to an insufficient amount of the deepest and most restorative type of sleep.
What Sleep Issues Affect a Person with ME:
- Hypersomnia
- Insomnia
- Lucid Dreaming
- Sleep disruption - frequent awakening
- Short duration sleep
- Unrefreshing sleep e.g. awaken feeling exhausted regardless of duration of sleep
- Day-time sleepiness
- Poor quality sleep
- Sleep apnoea
- Nightmares
- Vivid dreams
- Inability to stay awake during the day
- Difficulty getting to sleep at bedtime
- Difficulty waking up in the morning
- Waking for long periods
- Awaking much earlier than before illness onset
- Sleep reversal (e.g. sleeping from 4am till noon)
- Phase shifting (hard to fall asleep until early morning hours)
- Circadian Rhythm shifting
- Oversleeping
- Feeling "tired but wired"
- Restless legs
- Sleep paralysis
- Increase in pain
- Intense dreams
- Unrefreshing sleep
- Snoring, gasping or choking happens during sleep
- Feeling like you need to move when you relax (movement relieves this feeling)
- Feeling like you can’t move when you wake up
- Daytime sleepiness; you take frequent daytime naps or fall asleep easily
The high prevalence of sleep symptoms in ME highlights the need for improved strategies to combat their effects. The severity of these symptoms might reflect more generalised and subtle abnormalities in the CNS.
How the Person with ME may feel:
- Exacerbation of illness severity and symptoms which in turn can worsen sleep problems
- Worsening PENE, i.e., the atypical post exertional neuroimmune response
- Reduced pain threshold therefore widespread pain worsens
- Disoriented
- Mentally blank
- Not alert
- Brain fog
- Extremely unwell and exhausted so some people may need to sleep through the day
- Hungover without drink or other stimulants taken
- Hypersensitive
- Worsening cognitive issues with trouble concentrating the most commonly reported symptom, as well as other symptoms such as short-term memory, attention, and processing
- Behavioural changes as a result of the difficulties focusing or paying attention
- Mood changes like irritability and trouble managing negative emotions, thoughts and behaviours
- Lower reaction times making accidents more likely to happen, e.g., frequent accidents or falls
Sleep loss can also contribute to the development of health conditions like:
- Depression
- Obesity
- Type 2 diabetes
- Heart disease
- Dementia
How to Treat Sleep Issues
Addressing sleep problems is a good place to start for symptom management given that sleep can cause ME symptoms to become worse and treating sleep can reduce the severity of some symptoms. Sleep management strategies include a combination of the following categories:
• Practice good sleep hygiene including creating the optimum sleep environment
• Treat with Medications
• Treat Sleep Disorders (Using a CPAP machine to control sleep apnoea; light therapy, etc)
1. Practice Good Sleep Hygiene
Good sleep hygiene practice is important for everyone, including those with ME. Consistency is key.
How to practice sleep hygiene:
- Reduce stimulants such as tea, coffee,
alcohol, soda, decongestants, tobacco, alcohol, chocolate, heavy meals. - Reduce naps after 3pm. However, sleeping when needed in ME takes priority; listen to the body and rest or sleep when needed. Sleep dysfunction and an inability to produce sufficient energy on demand makes it essential that low energy reserves are not depleted. - Create a comfortable sleep environment: quiet, dark, suitable temperature, comfortable bed linen. Make sure that light, noise and temperature are set at the best for you and for good sleep. This might take some time to get right. Some might want it warm, others cooler at different times and depending on the seasons.
alcohol, soda, decongestants, tobacco, alcohol, chocolate, heavy meals. - Reduce naps after 3pm. However, sleeping when needed in ME takes priority; listen to the body and rest or sleep when needed. Sleep dysfunction and an inability to produce sufficient energy on demand makes it essential that low energy reserves are not depleted. - Create a comfortable sleep environment: quiet, dark, suitable temperature, comfortable bed linen. Make sure that light, noise and temperature are set at the best for you and for good sleep. This might take some time to get right. Some might want it warm, others cooler at different times and depending on the seasons.
If noise keeps you awake, try using background sounds like “white noise” or earplugs.
If light interferes with your sleep, try a sleep mask or blackout curtains.
- Minimizing stress: - Control stress and worry by reducing how much stress you feel before going to bed and practising relaxation techniques, doing calm and quiet activities, or listening to a relaxation DVD/podcast/other. You may choose to write things down like making a to-do list earlier in the evening. This is helpful if you tend to worry and think too much in bed at night. It also helps to stay positive rather than going to bed with a negative mindset, such as “If I don't get enough sleep tonight, how will I ever get through the day tomorrow?”
- Keep the bedroom as a ‘worry free sanctuary’; avoid using your bed for anything other than sleep and intimate relations: Don’t watch television or videos on your phone, eat or work in your bedroom.
- Establish a regular bedtime as much as possible. However, sleeping when needed takes priority. In the chronic phase, incorporating short naps into the day may assist in being able to establish a regular bedtime. To establish a regular bedtime routine: each night, create habits before you go to bed like taking a warm bath, listening to soothing music or reading. Try meditation.
- Not watching the clock: turn the clock around or turn your phone screen-side down and use only the alarm for waking up. Leave your bedroom if you can’t fall asleep in 20 minutes. Read or engage in a relaxing activity in another room that doesn’t involve screen time.
- Some people like sleeping or resting in a recliner to elevate the legs and possibly help with back pain.
- Pace day-time activities and incorporate rest periods. Over-exertion can increase insomnia.
- Allow time to wind down.
- Listen to the body and rest or sleep when needed. Sleep dysfunction and an inability to produce sufficient energy on demand makes it essential that low energy reserves are not depleted.
- Use a good mattress and pillows that are comfortable for you; make sure the mattress and pillows give proper postural support.
- Take sleep medications in the best required time before bedtime.
- Mindfulness meditation.
- Light therapy earlier in the day, e.g. morning. View bright light (ideally sunlight) in the morning for 15-30 minutes.
-Try to take control of your circadian rhythm. Our brain synchronizes to morning sunlight viewing & eating. Timing these consistently (daily) causes an anticipatory increase in alertness & attention. Creating consistent daily habits entrained by our circadian rhythm can improve our energy. Go to bed and wake up at the same time (+/-30 min) every day. (may not be possible for some)
2. Treat with Medications
Treating sleep with medications is challenging because there is no single medication that has proven helpful in solving sleep problems for people with ME. Some people with ME suffer from drug sensitivities or complete intolerance, so a medication known to be helpful for sleep may not suit; the approach to treatment needs to be flexible, and experimental. If you can tolerate medications, you could first consider over the counter (non-prescription) products like
· melatonin,
· valerian
· magnesium.
If over the counter medications don't work and you have to try prescription medications, our advice is to work with your doctor to find what helps, start with low doses and increase slowly to find a dose that is both effective and tolerated.
Prescription meds such as
· amitriptyline,
· gabapentin,
· pramipexole,
· pregabalin,
· zolpidem,
· zaleplon,
· eszopiclone, etc,
have been widely and successfully used by ME patients. Patients are usually prescribed at a low dose and increase slowly to find the 'sweet spot' that suits best.
Amitriptyline, and possibly other drugs, are generally used at low doses in people with M.E. (not sure if all medicines are available in Ireland)
Chemical hypersensitivity - Take care when trying new medications!
While medications can improve sleep, they can also make it worse; some drugs disrupt sleep or cause restless legs; some medications that contain caffeine and some antihistamines may interfere with sleep; and other medications can cause mild to severe side effects, like a feeling of grogginess in the morning or a total chemical sensitivity response.
There are no universal treatments for sleep issues in ME; what works for one person may not work for another so it can take time to find what suits you. Getting the dosage right to suit you can also take time too.
See more further below regarding different medications for treating different sleep disorders, under the heading ‘Management and Treatment of Sleep Disorders’.
3. Treat Sleep Disorders
55-100% of ME patients report unrefreshing sleep, but the cause is unclear, and several studies have not identified objective sleep differences. Shan et al study (2017) linked in resources at the bottom of the page, shows that ME patients with unrefreshing sleep may have structural brain differences, i.e., damage to the brain. The study findings potentially refute the suggestion that unrefreshing sleep is a misperception in ME patients.
Some guideline authors argue that primary sleep disorders should be treated as co-morbidities, and their presence should not preclude a diagnosis of ME, however symptoms in ME are clearly distinct from those of primary sleep disorders, and the illness is more than simply a somatic expression of an underlying sleep disorder or sleepiness. It is important to make sure that you have no underlying sleep conditions e.g., sleep apnoea or restless legs which should be addressed.
Some guideline authors argue that primary sleep disorders should be treated as co-morbidities, and their presence should not preclude a diagnosis of ME, however symptoms in ME are clearly distinct from those of primary sleep disorders, and the illness is more than simply a somatic expression of an underlying sleep disorder or sleepiness. It is important to make sure that you have no underlying sleep conditions e.g., sleep apnoea or restless legs which should be addressed.
Sleep disorders are conditions that affect your ability to get the rest your body needs and maintain wakefulness. Sleep disorders affect your quality of life. They can disrupt your thinking, mental health, and physical health.
Common sleep disorders prevent you from getting the restful, deep sleep you need to function at your best. If you’re struggling with your sleep, don’t hesitate to see a healthcare provider. Your health and, therefore, quality of life depends on good sleep. Practice good sleep hygiene and follow your healthcare provider’s instructions to feel better sooner.
There are many sleep disorders that impact:
· How well you sleep (quality).
· When you fall asleep and if you can stay asleep (timing).
· How much sleep and wakefulness you get (quantity or duration).
· Everyone can experience problems with sleep from time to time, but you might have a sleep disorder if:
- You regularly have trouble sleeping.
- You feel tired during the day even though you slept for at least seven hours the night before.
- It becomes difficult to perform regular daytime activities.
As with other symptoms in ME it is important to try to find out the underlying physiological cause of symptoms such as sleep disorders; there may be a root cause that is treatable, or testing may bring insight into how to manage or understand the sleep disorder.
What are the Major Categories of Sleep Disorders?
- Insomnia: You have difficulty falling and staying asleep.
- Sleep-related breathing disorders: Your breathing changes while you sleep.
- Central disorders of hypersomnolence: You have trouble feeling alert during the day.
- Circadian rhythm sleep-wake disorders: Your internal clock makes it difficult to fall asleep and wake up on time.
- Parasomnias: Physical actions or verbal expressions happen during sleep like walking, talking or eating.
- Sleep-related movement disorders: Physical movements or the urge to move makes it difficult to fall asleep and/or stay asleep.
What are the Types of Sleep Disorders?
There are many different types of sleep disorders. The most common include:
- Chronic insomnia: You have trouble falling asleep or staying asleep most nights for at least a few months and feel tired or irritable as a result.
- Obstructive sleep apnoea: You snore and have moments during sleep when you stop breathing that disrupt your sleep.
- Restless legs syndrome: You have the urge to move your legs when you rest.
- Delayed sleep phase syndrome: You fall asleep at least two hours after your desired bedtime and have difficulty waking up.
- REM sleep behaviour disorder: You act out your dreams while in the rapid eye movement (REM) stage of sleep.
What Causes Sleep Disorders?
A disruption to your body’s cycle of sleep and daytime wakefulness causes sleep disorders. Specific things may cause this to happen, and it varies based on the type of sleep disorder you have.
They may include:
· A symptom of a medical condition like Myalgic Encephalomyelitis (ME), heart
disease, asthma, pain, or a nerve condition.
disease, asthma, pain, or a nerve condition.
· A symptom of a mental health condition like depression or anxiety disorder.
· Genetic factors.
· A side effect of a medication.
· Substance abuse before bedtime like caffeine or alcohol.
· Low levels of certain chemicals or minerals in the brain.
What are the Risk Factors for Sleep Disorders?
You may be more at risk of sleep disorders if you:
· Have an underlying health condition.
· Experience stress.
· Have a history of sleep disorders in your biological family.
Diagnosis and Tests
How are sleep disorders diagnosed?
A healthcare provider will diagnose a sleep disorder after a physical exam to review your symptoms and testing. Tests can help your healthcare provider learn more about what’s causing your symptoms like blood tests or imaging tests.
· Sleep Diary - your doctor may ask you to keep a sleep diary. A sleep diary is a record of your sleeping habits. You’ll make note of when you go to bed, when you fall asleep and when you wake up each day. You should also make note of any naps you took during the daytime and how you felt before and after sleeping. It helps to keep a pen and piece of paper near your bed, so you don’t forget to write these items down. It can be difficult to know what time you fall asleep exactly, so you should estimate what that time is.
· Smartwatch - you might choose to wear a smartwatch or a device that records your cycles of rest and activity. This can confirm what time you fell asleep and woke up.
· Sleep Specialist - your primary healthcare provider may recommend you visit a sleep specialist who’ll perform a sleep study. A sleep study is a sleep disorder test
that electronically transmits and records specific body and brain activities while you sleep. A healthcare provider will analyse the sleep study data to determine whether or not you have a sleep disorder. Overnight sleep studies give a more thorough assessment of sleep issues. They are attended by a sleep technologist and capture many more signals, including brainwaves for sleep, muscle tone, and leg movements.
that electronically transmits and records specific body and brain activities while you sleep. A healthcare provider will analyse the sleep study data to determine whether or not you have a sleep disorder. Overnight sleep studies give a more thorough assessment of sleep issues. They are attended by a sleep technologist and capture many more signals, including brainwaves for sleep, muscle tone, and leg movements.
For individuals with certain heart, breathing, or neuromuscular problems, an overnight sleep study at a sleep centre in a hospital may be better. They are attended by a sleep technologist and capture many more signals, including brainwaves for sleep, muscle tone, and leg movements. For individuals with certain heart, breathing, or neuromuscular problems, an overnight sleep study at a sleep centre in a hospital may be better.
· Home Sleep Apnoea Test (HSAT) measures how well you sleep and the results from this test can determine if you have sleep apnoea. These tests use a small home sleep recorder worn overnight while you sleep in the comfort of your own home. A sleep specialist could interpret the sleep test results to determine if you have sleep apnoea.
What Questions Will My Healthcare Provider Ask Me During an Exam for Sleep Disorders?
To learn more about concerns you have about your sleep patterns, a healthcare provider may ask the following questions during an exam:
Do you have an underlying illness/condition?
How many hours do you sleep at night?
Do you toss and turn in your sleep?
Do you take naps?
How long does it take you to fall asleep?
Do you wake up in the middle of the night?
How sleepy do you feel during the day?
Do you snore?
Do I need to see a sleep specialist?
What Questions Should I ask My Healthcare Provider?
What kind of sleep disorder do I have?
How severe is my sleep disorder?
What type of treatment do you recommend?
Are there side effects of the treatment?
How can I improve my sleep hygiene?
Should I see a sleep specialist?
Do I need a referral to see a specialist?
Do you recommend any medications to help with my sleep disorder?
How often should I return to see you?
Are there medicines I should stop taking?
Your healthcareprovider may refer you to a sleep specialist if they suspect you have a sleep disorder. A sleep specialist is a highly trained healthcare provider who specializes in how sleep affects your body.
How are sleep disorders treated?
There are several types of treatment options available for various sleep disorders, which could include:
· Changing your sleeping routine to promote a regular sleep schedule and proper sleep hygiene.
· Taking medications like sleeping pills or supplements like melatonin. People with ME are very sensitive to prescription meds so they need to be careful while experimenting with a new drug and doses.
· Changing medications or the dosages you are already taking that cause excessive sleepiness; though it is advisable not to stop taking a medication unless your healthcare provider approves it.
· Using a CPAP (continuous positive airway pressure) machine to control sleep apnoea.
· Light therapy.
Your healthcare provider will recommend treatments based on your situation. They’ll also discuss any side effects to look out for before you begin treatment.
What Medications Treat Sleep Disorders?
Your healthcare provider may recommend some of the following medications and supplements to treat common sleep disorders:
Insomnia: Sleep aids, including melatonin, zolpidem, zaleplon, eszopiclone, ramelteon, suvorexant, lamborexant or doxepin.
Restless legs syndrome: Medication like gabapentin, gabapentin, pramipexole, or pregabalin.
Restless legs syndrome: Medication like gabapentin, gabapentin, pramipexole, or pregabalin.
How do I Get Better Sleep?
A healthcare provider may recommend you make changes to your sleep hygiene so you can sleep better. Sleep hygiene includes making changes to your sleeping routine to create an optimal sleeping environment.
You can get better sleep by:
· Creating a comfortable sleep environment
· Minimizing stress
· Establishing a regular bedtime routine
· Avoiding stimulants three to four hours before bedtime
See more on Sleep Hygiene towards the top of the page
Can Sleep Disorders Be Prevented?
You can’t prevent all types of sleep disorders, but you can reduce your risk by practising good sleep hygiene.
How Long Do Sleep Disorders Last?
There isn’t a specific time limit as to when a sleep disorder will stop affecting you. You may be able to find a treatment that makes you feel better within weeks to
months. Others may need to manage the condition throughout their lifetime. Talk
to your healthcare provider about your specific outlook.
months. Others may need to manage the condition throughout their lifetime. Talk
to your healthcare provider about your specific outlook.
Research - Some Key Findings re Sleep Issues in ME
- As per study on PEM in ME which includes feedback on sleep - 'Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME): A Patient-Driven Survey' (2019) by Leonard Jason et al:
95% of study participants experience the symptom of unrefreshing sleep; 87.3% experience insomnia; 82.1% experience physically fatigued while mentally wired; 54.4% experience excessive sleep - all based on an assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) where participants were asked to evaluate a list of symptoms that are exacerbated following physical and/or cognitive exertion.
Details from table 4. of a study Leonard Jason and others held. Table 4. hereFull study ''Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME): A Patient-Driven Survey" here
- As per study ‘Prevalence of and risk factors for severe cognitive and sleep symptoms in ME/CFS and MS’ (2017) by Jain, Kingdon, Nacul et al:
ME patients aged over 50 were more than three times more likely to experience severe sleep symptoms compared with those less than 30 years old. The reason for older age causing more severe symptoms are complex but may be partially due to age-related decreases in brain dopamine activity contributing to impaired performance on tasks that involve frontal brain regions.The pathophysiological processes occurring in ME may exaggerate normal age-related processes. For instance, Xenon-computed tomography blood flow studies show significantly lower cortical/cerebellar regional cerebral blood flow (rCBF) in ME are complex but may be partially due to age-related decreases in brain dopamine activity contributing to impaired performance on tasks that involve frontal brain regions.The pathophysiological processes occurring in ME may exaggerate normal age-related processes. For instance, Xenon-computed tomography blood flow studies show significantly lower cortical/cerebellar regional cerebral blood flow (rCBF) in ME.Sleep symptoms were more common in ME patients than in MS patients and healthy controls.
Research has demonstrated that sleep physiology is altered in ME patients, but management of the condition, and available pharmacological therapy, still fails to address this critical issue. Future research must explore both pharmacological and non-pharmacological methods aimed at improving quality and duration of sleep in ME.
The most commonly reported severe symptom in both groups was unrefreshing sleep: 55.3% in the ME group, compared with 27.7% in the MS group. The number of MS patients reporting severe non-sleep related symptoms was relatively low (ranging from 2.1 to 6.4%), compared with the ME group (ranging from 13.1 to 31.6%).
The study also found that the classic ME symptoms of sleep disturbance and trouble concentrating were most commonly reported as severe compared to other symptoms.
Unrefreshing sleep, or sleep of poor quality or short duration were the most commonly reported severe symptoms in both the ME and MS groups.
The study results found a relationship between smoking habits and severe cognitive and sleep symptoms in ME. This is of clinical importance as it suggests that stopping or preventing smoking may help reduce the risk of developing more severe symptoms in such patients.
- As per study ‘Sleep disturbance in chronic fatigue syndrome’ (1993) by Krupp et al: the sleep characteristics in 72 patients with ME compared with 57 MS patients found that the ME patients experienced significantly more sleep disturbance compared with MS patients. Among the ME patients, 37% reported light sleeping, 15% reported inadequate sleep, and 27% reported early waking, compared with 10, 5, and 0% respectively for the MS group.
- As per the Canadian Consensus document (2003): “Cognitive symptoms including confusion, slowed processing of information, difficulty concentrating, poor short-term memory, and sleep problems are common in ME.”
- As per the International Consensus Primer (2012) page 7, B. Neurological Impairments: 3. Sleep Disturbance:
- Disturbed sleep patterns: e.g. insomnia, prolonged sleep including naps,sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares- Unrefreshed sleep: e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness
- As per study ‘Circadian rhythm abnormalities and autonomic dysfunction in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis', (2018) by Cambras et al: Energy level, activity, alertness, and mood all follow daily circadian rhythms in healthy people. Individuals with ME show irregular activity patterns with decreased total activity, lower activity rhythm amplitude, and less stable rhythms. Fatigue and inactivity in the context of ME may be both a cause and effect of circadian disruption.
Other Resources re Sleep Issues in ME
Maximising Sleep piece page 14 of the International Consensus Primer
25% ME Group's factsheet, a PDF listed third in their resources list, i.e., 'Sleep and ME' factsheet
ME International's Sleep Guide
Research
Shan et al., (2017). Medial prefrontal cortex deficits correlate with unrefreshing sleep in patients with chronic fatigue syndrome study here and here
Prevalence of and risk factors for severe cognitive and sleep symptoms in ME/CFS and MS study here
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