Pacing in hEDS: Why It Matters and How to Do It
Pacing is a vital self-management strategy for individuals with hypermobile Ehlers-Danlos syndrome (hEDS), helping to prevent injury, manage fatigue, and reduce post-exertional crashes. Pacing involves breaking up tasks, alternating between activity and rest, and stopping before symptoms worsen. While commonly associated with physical activity, pacing also includes cognitive pacing—managing mental workload to avoid brain fog and overstimulation. Recognizing both physical and cognitive demands allows individuals with hEDS to better preserve function and quality of life. In addition to these internal strategies, many people with hEDS also require external accommodations—such as jury duty exemption, accessible parking, and workplace adjustments—to fully participate in school, work, and civic life. These accommodations complement pacing strategies by removing environmental barriers and reducing cumulative strain.
Why Pacing Is Important in hEDS
People with hEDS often deal with
Fragile joints and connective tissue
Fatigue that worsens with exertion
Post-exertional symptom flares
Joint injuries and dislocations
Autonomic dysfunction (e.g., POTS)
Comorbid conditions (e.g., hearing loss, Mitral Valve Prolapse) that further reduce activity tolerance
In addition to these challenges, theoretical models based on collagen biology suggest that tissue healing is impaired in hEDS. Because collagen is a key component in repairing muscles, ligaments, and other structures, individuals with hEDS may need longer recovery periods to allow for tissue remodeling. Without adequate rest, the body may not complete essential repair processes, increasing the risk of reinjury, inflammation, and chronic pain.
The importance of pacing lies in its ability to prevent the common cycle of overexertion followed by prolonged symptom flares, which can exacerbate pain, fatigue, and loss of function. Without pacing, individuals are more likely to experience functional decline, joint injury, dependence on others, and reduced quality of life.
Evidence and Guidelines Supporting Pacing
Research shows pacing improves symptom control, daily functioning, and emotional wellbeing in hEDS and other chronic pain conditions.
The GeneReviews guideline from the University of Washington recommends occupational and physical therapy to teach:
Pacing techniques
Ergonomic adaptations
Assistive devices to support independence and reduce strain
Comprehensive self-management programs for hEDS now routinely include pacing education, particularly for people with multisystem involvement like dysautonomia, hearing impairment, or mitral valve prolapse.
Collagen, Healing, and Rest
Empirically Known
There is no formal clinical guideline that definitively states people with hEDS require more rest to heal due to collagen issues. However, studies and clinical observations consistently report
Delayed healing is common in hEDS patients, including soft tissue injuries, muscle strains, and joint or surgical wounds.
Prolonged recovery after activity is frequently reported, often leading to a “crash” effect from even mild exertion.
Muscle recovery is slower and more prone to reinjury due to instability and overuse.
These findings strongly support the need for structured rest periods between physical activities, based on clinical outcomes.
Theoretical Understanding
From a biological standpoint, hEDS involves abnormal collagen structure or function. Collagen is essential in tendons, ligaments, muscles, skin, and blood vessels. In hEDS
Collagen used in tissue repair may be dysfunctional or poorly formed.
Fibroblasts may not lay down collagen efficiently, slowing the repair of soft tissue.
Instability in joints leads to increased muscle compensation, which can result in chronic microinjury.
Therefore, individuals with hEDS may require longer and more frequent rest periods to support healing, and may benefit from pacing strategies that reduce cumulative tissue stress.
How to Implement Pacing Effectively
Core Techniques
Self-monitoring: Track daily activities and symptoms to identify limits and triggers. The Spider Questionnaire can be used for this purpose even though it was not created for daily monitoring.
Scheduled rest breaks: Don’t wait for exhaustion—build short, regular breaks into your day. This gives your body time to recover and repair, which may be especially important in hEDS due to slower tissue healing.
Cognitive pacing: Mental effort can be just as draining as physical exertion. People with hEDS frequently report brain fog, sensory overwhelm, and cognitive crashes after demanding mental tasks. Incorporating cognitive pacing includes:
Taking short mental breaks throughout the day
Avoiding long periods of multitasking or concentration
Alternating demanding tasks with less intensive ones
Using quiet time to calm the nervous system and reset
Prioritization and planning: Focus on what matters most; break large tasks into manageable steps.
Goal setting: Set realistic daily goals that match your energy and physical capacity.
Environmental modifications: Adapt your home or workspace to reduce physical and cognitive strain (e.g., using visual supports, reducing noise, or adding ergonomic tools).
Alternating tasks: Switch between physical and mental activities to avoid overuse in one area and give different systems time to recover.
Professional Support
Occupational therapists can help restructure daily routines, recommend adaptive equipment, and teach energy-saving strategies.
Physical therapists can guide appropriate strengthening without overexertion and help design programs that include adequate recovery intervals.
Risks of Not Pacing
Without pacing, individuals with hEDS face
Increased pain and fatigue
Greater risk of joint dislocations, sprains, and injuries
Worsening of comorbid symptoms (e.g., dysautonomia, migraines)
Post-exertional crashes that may last hours to days
Loss of independence and reduced participation in work, school, and relationships
Because tissue repair in hEDS may be less efficient due to faulty collagen, skipping rest and pushing through symptoms can lead to cumulative damage—especially in muscles, ligaments, and joint structures. This is particularly critical for people with hEDS who also experience vestibular issues, hearing loss, or cardiac symptoms, which can further reduce activity tolerance.
Accommodations in hEDS
Social Life
Pacing is a crucial self-management strategy for people with hEDS, helping to prevent symptom flares and manage fatigue, pain, and dysautonomia. Social activities often involve unpredictable demands—physical, cognitive, and emotional—that can be difficult to tolerate without planned modifications.
Limit the length and frequency of social engagements to conserve energy and reduce post-exertional symptoms.
Prioritize lower-stimulation environments (e.g., quiet cafés over crowded events) to minimize sensory overload and autonomic distress.
Allow flexible participation, including arriving late, leaving early, or skipping events without judgment.
Schedule rest before and after social outings to allow recovery time.
Use mobility aids, compression garments, or hydration strategies discreetly as needed during social interactions.
Maintain honest communication with friends and family about limits and the need to cancel or reschedule.
Engage in virtual or low-effort forms of connection (e.g., video calls, texting, shared media) as alternatives to in-person events.
Disabled License Plates and Placards
A disabled parking placard may be appropriate for individuals with hEDS who experience significant mobility limitations, severe fatigue, or exercise intolerance, especially when dysautonomia is present.
These accommodations reduce physical exertion, improve access to buildings and services, and support participation in work, school, and healthcare.
Decisions about placard eligibility should be based on a physician’s evaluation of the patient’s functional status and specific mobility challenges.
Workplace Accommodations
Flexible scheduling, remote work options, and rest breaks can help manage fatigue and prevent symptom flares.
Ergonomic workstations, including adjustable chairs, keyboards, and desks, may reduce joint strain and pain.
Allowances for assistive devices (e.g., braces, mobility aids) and modified job duties may be needed.
School Accommodations
Extended time on tests and assignments, note-taking assistance, and reduced course loads may help manage cognitive and physical fatigue.
Flexibility with attendance, participation, and group activities can support pacing in social life, which is essential for managing energy levels and preventing symptom flares.
Jury Service
Individuals with hypermobile Ehlers-Danlos syndrome (hEDS) may face substantial barriers to serving on a jury due to brain fog, which includes difficulties with attention, memory, and executive function.
Neuropsychiatric and neurodevelopmental comorbidities such as anxiety, depression, ADHD, and autism spectrum disorder—common in hEDS—can further impair concentration, emotional regulation, and decision-making under pressure.
Fatigue, chronic pain, and orthostatic intolerance often worsen with prolonged sitting and unpredictable schedules, making it difficult to sustain participation in courtroom settings.
Accommodations such as exemption from jury service, frequent breaks, ergonomic seating, or remote participation (where allowed) may be necessary.• Functional capacity should be assessed on a case-by-case basis to determine the feasibility of jury participation.
Disabled License Plates and Placards
A disabled parking placard may be appropriate for individuals with hEDS who experience significant mobility limitations, severe fatigue, or exercise intolerance, especially when dysautonomia (dysfunction of the autonomic nervous system) is present.
These accommodations reduce physical exertion, improve access to buildings and services, and support participation in work, school, and healthcare.
Decisions about placard eligibility should be based on a physician’s evaluation of the patient’s functional status and specific mobility challenges.
Summary
Pacing in hEDS involves balancing activity and rest—both physical and mental—to avoid overexertion, protect fragile tissues, and maintain energy throughout the day. It helps prevent the common cycle of doing too much followed by prolonged symptom flares. Because collagen repair may be slower or impaired in hEDS, rest isn’t just helpful—it’s biologically necessary for healing. Cognitive pacing plays an equally important role by reducing brain fog, emotional fatigue, and sensory overload. Alongside pacing, many individuals with hEDS benefit from formal accommodations in social, civic, educational, and work environments. These include ergonomic supports, schedule flexibility, and mobility access tools that reduce physical and cognitive strain. Together, pacing and accommodations empower individuals with hEDS to participate more fully and sustainably in daily life.
