Sleep Disturbances in hEDS
See below for information about Delayed Sleep Phase
Sleep problems are common in people with hypermobile Ehlers-Danlos syndrome (hEDS), a condition that affects connective tissue and joint stability. These sleep issues can significantly reduce quality of life. Between 40% and 78% of people with hEDS report serious problems like difficulty falling asleep, staying asleep, or waking too early. These problems are often long-lasting and caused by multiple factors. Poor sleep also makes other symptoms—like pain, fatigue, brain fog, and mood changes—much worse.
Common Sleep Problems in hEDS
People with hEDS of all ages may experience:
Insomnia (trouble falling or staying asleep)
Non-restorative sleep (waking up tired even after sleeping enough hours)
Excessive daytime sleepiness
Fatigue despite adequate sleep time
Frequent night wakings
Delayed sleep phase (naturally falling asleep and waking up very late)
Restless Legs Syndrome (RLS) – an urge to move the legs at night
Periodic Limb Movement Disorder (PLMD) – repeated leg movements during sleep
Obstructive Sleep Apnea (OSA) – breathing briefly stops or becomes shallow during sleep
Vivid dreams or sleep disrupted by pain or anxiety
Why Sleep Problems Happen in hEDS
Sleep difficulties in hEDS have many causes
Pain and Joint Instability
Pain makes it hard to get comfortable or stay asleep.
Joints may partially dislocate (sublux) during sleep.
The nervous system may become more sensitive to pain signals at night.
Autonomic Dysfunction (especially POTS)
The autonomic nervous system controls things like heart rate, blood pressure, and body temperature.
In hEDS, it may be overactive at night, leading to fast heartbeat, sweating, or feeling overheated—all of which disrupt sleep.
Mast Cell Activation Syndrome (MCAS)
At night, mast cells may release histamine, a chemical that can cause itching, flushing, bloating, or anxiety.
This can lead to nighttime awakenings.
Anxiety and Depression
High levels of anxiety or low mood are common in hEDS and interfere with falling or staying asleep.
Racing thoughts at bedtime or early waking are typical symptoms.
Airway Issues
Loose connective tissue can cause the throat to collapse during sleep, increasing the risk of sleep apnea.
Jaw joint problems (TMJ) may make it harder to use breathing machines like CPAP.
Nervous System Factors
Restless legs and limb movements can wake people up throughout the night.
Disruptions in the brain’s sleep-wake cycles may reduce melatonin, the sleep hormone.
Mood and Mental Health Impacts
Depression and anxiety are strongly linked to poor sleep and are common in people with hEDS.
Even short-term sleep loss increases irritability and lowers emotional resilience.
Pain, poor sleep, and mood issues often form a vicious cycle, each making the others worse.
Sleep loss leads to low motivation, emotional exhaustion, and poor quality of life.
What Happens When Sleep Is Poor
Poor sleep can affect nearly every part of the body—and people with hEDS may be more vulnerable due to their underlying condition.
Blood sugar issues – higher risk of insulin resistance and diabetes
Heart problems – higher risk of high blood pressure and abnormal rhythms
Immune system changes – increased inflammation, more frequent illness
Weight gain – poor sleep affects hunger hormones
Memory and thinking – worse concentration, forgetfulness, slower reactions
Stress hormone imbalance – elevated cortisol (a stress hormone)
Digestive problems – increased pain and gut discomfort
How to Improve Sleep in hEDS
Pain and Joint Support
Use a supportive mattress and pillows.
Consider night braces to keep joints in place.
Try stretching, heat, or gentle movement before bed.
Use pain creams or medications if recommended.
Autonomic Dysfunction
Stay well hydrated and eat enough salt if advised.
Wear compression garments during the day.
Keep the bedroom cool and dark.
Medications like beta blockers may help (if prescribed).
Mast Cell Support
Take antihistamines (H1 and H2 blockers) in the evening.
Avoid alcohol and high-histamine foods before bed.
Follow a low-histamine diet if advised.
Behavioral Sleep Tools
CBT-I (Cognitive Behavioral Therapy for Insomnia) is the most effective long-term treatment.
Try relaxing techniques like deep breathing, body scans, or guided meditations.
Keep regular sleep and wake times.
Avoid screens for 1–2 hours before bed.
Use light therapy in the morning if your sleep cycle is delayed.
Mood and Sleep Supplements
Talk to your doctor about therapy or medication for anxiety or depression.
Consider low-dose melatonin (0.3–1 mg) for sleep cycle support.
Calming supplements like magnesium or L-theanine may help.
Avoid caffeine and stimulants after early afternoon.
Treating Diagnosed Sleep Conditions
Use CPAP/BiPAP if you have sleep apnea (adjust masks for TMJ if needed).
Take iron if your ferritin is low and you have restless legs.
RLS/PLMD may be treated with certain nerve medications.
Ask for a sleep study if you have loud snoring, severe fatigue, or leg twitching at night.
When to Get Specialist Help
Sleep doctor – for testing and treatment of apnea or complex insomnia
Psychologist – for anxiety, depression, or behavioral insomnia
Neurologist – for restless legs or extreme sleepiness
Pain specialist – for difficult-to-control nighttime pain
ENT doctor – if jaw issues or nasal problems worsen sleep apnea
Summary
People with hEDS frequently have trouble sleeping, often due to pain, unstable joints, overactive nerves, histamine release, anxiety, or breathing problems during sleep. These issues can cause insomnia, night waking, fatigue, or diagnosed sleep conditions like sleep apnea and restless legs syndrome.
Improving sleep often requires multiple strategies, including:
Pain and joint support
Managing POTS or mast cell symptoms
Treating anxiety and depression
Behavioral tools like CBT-I
Careful use of medications when needed
Formal sleep studies when a disorder is suspected
Sleep should be seen as a core part of managing hEDS. Better sleep improves pain, mood, thinking, and overall well-being. A personalized, whole-person approach works best.
Delayed Sleep Phase in hEDS
Delayed Sleep Phase, formally called Delayed Sleep-Wake Phase Disorder (DSP/DSWPD), is a circadian rhythm disorder in which a person’s internal clock is significantly shifted later than societal norms. This makes it difficult to fall asleep and wake up at conventional times. Although DSP affects people of all kinds, it may be especially relevant in people with hypermobile Ehlers-Danlos syndrome (hEDS), a connective tissue disorder associated with chronic pain, fatigue, and autonomic dysfunction. Research on this link is still emerging, but patients and providers should be aware of how DSP may affect sleep quality, mental health, and daily functioning in hEDS.
What Is Delayed Sleep Phase?
Definition and Diagnostic Criteria
A persistent delay in sleep onset and wake time—usually by 2+ hours
Difficulty falling asleep before 1–2 a.m., despite efforts to do so
Difficulty waking in time for work, school, or appointments
Normal sleep quality and duration when following personal schedule
Symptoms must last ≥3 months and cause social or occupational impairment
Diagnosed using
Sleep diary and/or actigraphy (7+ days, including weekdays and weekends)
Optional: dim light melatonin onset (DLMO) testing
Common Symptoms
Trouble falling asleep at desired times
Oversleeping or sleeping into the late morning/early afternoon
Daytime sleepiness
Impaired attention, memory, and mood due to sleep restriction
Prevalence
Although no large-scale epidemiological studies have specifically quantified the prevalence of DSP/DSWPD in people with hEDS, clinical evidence and case reports suggest that delayed sleep phase is a significant and underrecognized issue in this population. In pediatric hEDS cohorts, studies have documented high rates of sleep disturbances, including delayed sleep onset, poor sleep quality, and difficulty waking—core features of DSP—even if the diagnosis is not formally coded.
Clinical consensus and patient self-reports frequently describe a pattern of delayed sleep timing in hEDS, particularly in adolescents and young adults. In addition, theoretical models strongly support an elevated risk of DSP in hEDS due to the overlap of chronic pain, autonomic dysfunction, anxiety, sensory sensitivity, and behavioral adaptations to illness—all of which are known contributors to circadian disruption. Thus, while direct prevalence data are lacking, the evidence from case reports, clinical observation, and mechanistic pathways supports the conclusion that DSP is likely more common in hEDS than in the general population.
What May Contribute to DSP in hEDS
Chronic pain interfering with falling asleep
Anxiety and hyperarousal delaying nighttime relaxation
Fatigue and reduced activity lowering exposure to natural circadian cues
Autonomic dysfunction disrupting sleep-wake regulation
Behavioral adaptations (e.g., screen use, irregular schedules)
Possible mast cell activation contributing to nighttime symptoms
No direct genetic link known—but overlapping heritability is possible
Pediatric Considerations
Children and teens with hEDS often show
Delayed sleep timing
Insomnia and middle-of-the-night awakenings
Hypersomnia or sleeping into late morning
Excessive daytime fatigue
These issues can impact
School attendance
Academic performance
Social engagement
Emotional development
Sleep disorders in this age group are often underdiagnosed but have major functional impacts.
Effects of DSP/DSWPD on People with hEDS
Increased fatigue and poor daytime functioning
Poor academic or job performance due to late wake times
Exacerbated mood symptoms (anxiety, depression)
Decreased participation in therapy or daily responsibilities
Worsened pain perception due to poor sleep quality
Disrupted social life and feelings of isolation
Diagnostic Tools for DSP in hEDS
Sleep diary
Patient keeps daily log of bedtime, wake time, and sleep quality
Minimum of 7 days including both weekdays and weekends
Actigraphy
Wrist-worn device tracks rest/activity cycles
Objectively documents sleep-wake pattern
Dim Light Melatonin Onset (DLMO)
Measures timing of melatonin release
Confirms biological clock is delayed
Optional, but useful when diagnosis is unclear
Clinical evaluation should include
Sleep history and patterns
Functional impairment
Other comorbid sleep disorders (insomnia, OSA, PLMD)
Psychiatric screening (anxiety, depression, ADHD)
Treatment Strategies for DSP in People with hEDS
Evidence-Based Approaches (For General Population, Adaptable for hEDS)
Melatonin
0.3–0.5 mg fast-release taken ~1 hour before desired bedtime
Helps signal earlier sleep onset
Use lower doses initially to monitor sensitivity in hEDS
Bright light therapy
2,500–10,000 lux for 30–60 minutes shortly after waking
Helps shift circadian clock earlier
Use with caution in patients with migraine or light sensitivity
Gradual sleep-wake schedule advancement
Move bedtime/wake time earlier by 15–30 minutes every few days
Reinforce consistency, even on weekends
Sleep hygiene education
Avoid screens and bright lights in the evening
Keep bedroom dark, cool, and quiet
Avoid caffeine and stimulating activities before bed
Build daytime structure and activity to reinforce sleep cues
hEDS-Specific Considerations
Chronic pain
May need to address pain management before sleep treatment can succeed
Consider timing physical therapy and pain medications to avoid evening pain spikes
Autonomic dysfunction
Monitor effects of melatonin on blood pressure
Track morning symptoms when adding light therapy
Psychiatric comorbidities
Anxiety or ADHD may complicate adherence to routines
Cognitive behavioral therapy may help address sleep-related anxiety
Pacing and fatigue management
Support daytime activity without overexertion
Encourage consistent exposure to light and activity cues
Children and adolescents
Consider school start time accommodations
Collaborate with schools for individualized education plans (IEPs)
o Engage parents in supporting routines and structure
Summary
Delayed sleep phase (DSP/DSWPD) is a circadian rhythm disorder defined by a significant delay in falling asleep and waking up, often by two or more hours. It is especially relevant to individuals with hEDS, due to overlapping features such as chronic pain, dysautonomia, anxiety, fatigue, and behavioral adaptations to illness. While direct prevalence data are limited, emerging and theoretical evidence strongly suggest that DSP is more common in people with hEDS than in the general population—especially in adolescents and young adults.
Symptoms include difficulty falling asleep at conventional times, sleeping late, excessive daytime fatigue, and impaired function. Diagnosis is clinical and often includes actigraphy, sleep diaries, and (optionally) melatonin onset testing. Treatment consists of melatonin, light therapy, behavioral schedule shifts, and sleep hygiene—all of which should be adapted to accommodate the specific needs and sensitivities of people with hEDS. A multidisciplinary and individualized approach is essential for effective care.
