Alternative and Non-Western Treatments in hEDS
Hypermobile Ehlers-Danlos syndrome (hEDS) is a multisystem connective tissue condition characterized by joint hypermobility, tissue fragility, impaired proprioception (awareness of joint position and movement), autonomic nervous system dysregulation, and a high prevalence of chronic pain. Pain in hEDS is typically multifactorial and may include musculoskeletal pain (from joint instability, subluxations, and muscle overuse), neuropathic pain (from nerve irritation or central sensitization, meaning amplified pain signaling in the nervous system), visceral pain (from gastrointestinal dysmotility and visceral hypersensitivity), headaches (including cervicogenic headache and migraine), and pain associated with temporomandibular joint dysfunction and dysautonomia.
More than 90% of people with hEDS report chronic pain, often beginning in childhood or adolescence and persisting across the lifespan. Because medications alone frequently provide incomplete relief and may carry cumulative side effects, non-pharmacological approaches form the foundation of pain management in hEDS. Clinical guidelines and expert consensus emphasize individualized, multidisciplinary care that integrates physical rehabilitation, psychological support, assistive devices, and selected complementary approaches.
This page summarizes commonly used non-medication strategies for pain in hEDS, how they may help, and how to think realistically about effectiveness and safety.
Core Rehabilitation Approaches
Physical Therapy and Occupational Therapy
Physical therapy (PT) and occupational therapy (OT) are the most consistently supported non-pharmacological treatments for pain and functional limitation in hEDS.
These therapies focus on
Improving muscular strength and endurance to compensate for ligament laxity
Enhancing proprioception and motor control to reduce injury risk
Stabilizing joints through targeted strengthening rather than stretching
Improving posture, balance, and movement efficiency
Supporting daily function through adaptive strategies and assistive devices
When programs are individualized and paced conservatively, studies show meaningful improvements in pain, fatigue, balance, and quality of life. Registry data and patient surveys consistently rank hEDS-informed physical therapy among the most helpful interventions.
Occupational therapy may include joint protection strategies, ergonomic modification, splinting, pacing strategies, energy conservation, and adaptive tools for daily activities. Bracing and splinting can meaningfully reduce mechanical strain and pain in unstable joints when properly fitted and used strategically.
Safety depends on appropriate pacing, avoidance of hyperextension, and collaboration with clinicians familiar with connective tissue disorders.
Psychological and Behavioral Therapies
Psychological approaches address how the nervous system processes pain and how individuals adapt to chronic illness. These therapies do not imply that pain is “psychological” in origin; rather, they recognize that pain perception and regulation occur within the brain and nervous system.
Common approaches include
Cognitive behavioral therapy (CBT)
Pain education
Mindfulness-based approaches
Acceptance and coping skills training
These approaches are associated with improvements in pain interference, emotional distress, sleep quality, and overall quality of life. They are particularly helpful when central sensitization, anxiety, fear of movement, trauma history, or sleep disturbance contribute to symptom burden.
Structured online and digital programs designed for hypermobility populations show promising early results for accessibility and sustained engagement.
Complementary and Manual Therapies
Massage Therapy
Massage therapy may reduce muscle tension, myofascial pain (pain arising from muscle and connective tissue), and autonomic arousal. Many people with hEDS develop significant muscle guarding as muscles work continuously to stabilize lax joints, contributing to trigger points, stiffness, and sleep disruption.
Patient surveys and registry studies consistently report perceived benefit from massage for pain relief, relaxation, and sleep quality. Although large randomized trials specifically in hEDS are limited, smaller studies in hypermobility-related pain and extrapolation from other chronic musculoskeletal pain populations support modest to moderate short-term reductions in pain and improved comfort for many individuals.
Gentle techniques are generally preferred due to skin fragility, easy bruising, and joint instability. Deep tissue or aggressive manipulation may increase the risk of bruising, joint irritation, or subluxation in susceptible individuals. Massage is often most helpful when combined with stabilization-focused physical therapy rather than used alone.
For some patients, massage represents one of the most consistently helpful symptom-relief tools, even if benefits are temporary.
Acupuncture and Dry Needling
Acupuncture and dry needling may influence pain through modulation of endogenous opioid pathways (the body’s internal pain-relieving chemicals), neuromuscular relaxation, and central pain processing. Small clinical studies and extrapolation from fibromyalgia, myofascial pain, and chronic musculoskeletal pain populations suggest that some individuals experience meaningful pain reduction, improved muscle tension, and improved function.
In hEDS, patient experience suggests variable but sometimes substantial benefit, particularly for localized muscle pain, trigger points, and headache patterns. As with massage, formal hEDS-specific trials are limited, but limited evidence does not necessarily reflect lack of effectiveness.
Risks include bruising, bleeding, and local irritation. Caution is warranted in individuals with fragile skin, bleeding tendencies, or significant autonomic sensitivity.
Device-Based Modalities
Transcutaneous Electrical Nerve Stimulation (TENS)
TENS delivers low-voltage electrical stimulation through surface electrodes. It may reduce pain by inhibiting pain signal transmission in the spinal cord and activating non-pain sensory pathways.
Advantages include
Low cost and home use
Non-invasive application
Favorable safety profile
Flexibility for flare management
Although hEDS-specific trials are limited, TENS is widely used in chronic pain populations and many patients report meaningful symptom relief, particularly for localized musculoskeletal or neuropathic pain. For some individuals, TENS becomes an important self-management tool.
Red Light and Laser Therapies
Low-level laser therapy and red light therapy may exert anti-inflammatory and neuromodulatory effects. Small studies in musculoskeletal pain populations suggest possible short-term reductions in pain and inflammation, although results are mixed and protocols vary.
In hEDS, these therapies are often used as adjuncts and may help selected individuals, particularly when muscle pain or localized inflammation contributes to symptoms. Availability and cost may limit access.
Emerging and Digital Modalities
Virtual reality–based pain programs, tele-rehabilitation, and structured online pain management platforms are increasingly used in chronic pain populations. Early studies suggest improvements in pain perception, engagement in rehabilitation, and emotional coping. Digital delivery improves accessibility for individuals with mobility limitations, geographic barriers, or fatigue.
Energy-Based and Spiritual Modalities
Some individuals with hEDS pursue therapies described as working with energy, biofields, or spiritual alignment, such as Reiki, Healing Touch, and related practices.
Practitioners and users often describe these approaches as restoring energetic balance or supporting self-healing. These conceptual models are meaningful to many people but have not been scientifically validated as biological mechanisms.
Scientific research suggests several plausible contributors to reported benefit:
Regulation of the autonomic nervous system, promoting relaxation and reduced muscle tension
Expectation and contextual effects that influence pain processing in the brain
Activation of the relaxation response and improved interoceptive awareness (awareness of internal bodily signals)
Therapeutic alliance, emotional safety, and supportive care
Small studies in non-hEDS populations show mixed results, with some demonstrating modest short-term reductions in pain or anxiety and others showing no difference from sham treatments. Overall effect sizes are typically small, but individual subjective benefit may still be meaningful.
These approaches are best viewed as supportive rather than primary pain treatments. They are generally low risk when involving gentle or no touch and may contribute to emotional well-being and nervous system calming for some individuals.
Relative Effectiveness and How to Interpret the Evidence
When comparing non-pharmacological approaches for pain in hEDS, it is important to distinguish between strength of formal research evidence and real-world clinical effectiveness for individual patients. These are not the same.
Some therapies appear to have stronger evidence primarily because they have been studied more extensively, often due to greater funding availability, easier trial design, or institutional prioritization. Other therapies—especially hands-on, complementary, or individualized modalities—have far fewer large trials despite being widely used and reported as helpful by patients and clinicians. Limited evidence should therefore not be interpreted as lack of benefit.
In hEDS, many of the most helpful interventions have emerged through clinical experience and patient-reported outcomes rather than large randomized trials. Individual response varies substantially based on pain type, joint stability, autonomic function, sensory
sensitivity, trauma history, access to skilled providers, and pacing capacity.
Broadly,
Physical therapy, occupational therapy, bracing, and structured rehabilitation have the strongest formal research support and consistently improve pain, function, and injury prevention when properly individualized.
Psychological and behavioral therapies show moderate evidence for improving pain interference, coping, sleep, and quality of life and are particularly helpful when central nervous system amplification or emotional distress contributes to pain.
Manual and complementary therapies, including massage and acupuncture, are frequently reported by patients as among the most helpful tools for symptom relief, even though large hEDS-specific trials are limited. For many individuals, these therapies provide meaningful comfort and functional improvement.
Device-based therapies, such as TENS and light-based therapies, may provide meaningful benefit for selected individuals and support self-management, despite limited formal research in hEDS.
Energy-based and spiritual modalities may support relaxation, emotional regulation, and coping for some individuals and can meaningfully improve quality of life when used safely.
Because hEDS is highly variable, no single modality works best for everyone. Most people ultimately rely on a personalized combination of approaches.
Special Considerations Across the Lifespan
Children and adolescents benefit most from early physical therapy focused on motor control, joint protection, and confidence in movement. Family education and psychological support improve long-term outcomes.
Adults often require integrated approaches addressing pain, fatigue, autonomic symptoms, and occupational demands.
Older adults face additional risks related to sarcopenia (age-related muscle loss), osteoporosis, and medication burden. Gentle strengthening, fall prevention, and nutrition become increasingly important.
Safety and Practical Guidance
Interventions should be individualized and paced conservatively.
Aggressive stretching, high-impact activity, and deep manual manipulation may increase injury risk.
Preservation of muscle mass and joint stability is critical.
Multidisciplinary coordination improves outcomes.
Complementary approaches should support—not replace—core rehabilitation and medical care.
Summary
Non-pharmacological therapies form the foundation of pain management in hypermobile Ehlers-Danlos syndrome. Physical and occupational therapy remain the most consistently supported interventions for long-term function and injury prevention. Psychological therapies and structured digital programs support central pain processing and coping. Manual therapies, device-based modalities, and supportive approaches may provide substantial symptom relief for many individuals, even when formal research remains limited. Energy-based and spiritual approaches may offer additional emotional and nervous system support for some people.
Because pain in hEDS is multifactorial and highly individualized, effective management usually involves a layered, personalized combination of strategies that evolves over time.
