Alternative and Non-Western Treatments in hEDS
Introduction
Hypermobile Ehlers-Danlos syndrome (hEDS) is a complex connective tissue disorder marked by joint hypermobility, chronic pain, proprioceptive deficits, and a wide range of systemic manifestations. Due to the limitations of conventional treatments and the chronic, often disabling nature of symptoms, many individuals with hEDS seek complementary and alternative medicine (CAM) approaches. These include non-Western treatments such as massage, acupuncture, meditation, Reiki, and TENS.
Many patients report subjective benefit from these approaches, even when empirical data are limited or absent. Importantly, alternative therapies are not a substitute for necessary medical care, but rather an adjunct for symptom management, emotional regulation, and overall well-being. However, access, cost, and potential risks—particularly in people with connective tissue fragility—must be considered when exploring these options. This article synthesizes current evidence, theoretical rationale, and insurance coverage, offering guidance for individuals with hEDS and their providers.
Massage Therapy
Evidence and Benefits: Used by 68% of patients in U.S. cohorts; frequently cited as beneficial for pain, muscle tension, and well-being.
Theoretical Mechanism: Reduces nociceptive input (pain signals), improves circulation, and relaxes muscle spasm.
Risks: Potential for increased pain, soft tissue injury, or joint subluxation (partial dislocation) if vigorous techniques are used.
Insurance: Not covered by Medicare; rarely by Medicaid or private insurers.
Cost: $60–$150/session.
Patient Perspective: Many patients find gentle massage a useful tool for relaxation and temporary pain relief, but it is important to work with a practitioner experienced in hypermobility.
Chiropractic Care
Evidence and Risks: Used by 48% of patients; high-velocity spinal manipulations may exacerbate joint instability and are not recommended.
Theoretical Concern: Focus on restoring joint mobility may be counterproductive in hEDS due to excessive laxity.
Insurance: Covered for spinal subluxation by Medicare; private insurance coverage is variable and often limited to a specific number of sessions annually.
Cost: $30–$100/session.
Patient Perspective: While some individuals try chiropractic care, the potential risks in hEDS, particularly to spinal and joint stability, often outweigh any short-term relief.
Reiki and Energy Therapies
Evidence: Anecdotal reports; no empirical or mechanistic support (scientific explanation) in hEDS.
Theoretical Basis: Not grounded in biomedical science; based on concepts of energy flow.
Insurance: Rarely covered.
Cost: $50–$100/session.
Patient Perspective: Some patients report improved relaxation or sense of control, though effects are subjective and may vary.
Meditation and Mindfulness
Evidence: Pilot studies in hEDS show improved pain perception, mental health, and quality of life.
Mechanism: Modulates central pain processing, reduces catastrophizing, and enhances coping. Chronic pain in hEDS is thought to involve both nociceptive input from unstable joints and central sensitization—an amplification of pain signaling in the central nervous system. Mindfulness-based interventions may help address this by reducing pain perception and improving emotional regulation.
Risks: Minimal; may cause transient emotional discomfort.
Insurance: Generally not covered.
Cost: Free (apps) to $100/session.
Patient Perspective: Mindfulness can be a low-risk, self-guided practice that empowers patients to manage symptoms, stress, and emotional responses to chronic illness.
Transcutaneous Electrical Nerve Stimulation (TENS)
Evidence: Some benefit for pain reported; limited hEDS-specific trials.
Mechanism: Inhibits pain transmission via gate control theory (a neurological theory suggesting that stimulation of non-painful input can suppress pain).
Risks: Skin irritation or allergic reactions.
Insurance: Covered with restrictions.
Cost: $30–$100/unit.
Patient Perspective: TENS is a widely accessible tool that may help reduce localized pain. Some patients find it effective for certain joints or during flares.
Heat Therapies
Evidence: Widely used and perceived as helpful for muscle relaxation and pain relief.
Mechanism: Increases local circulation and reduces muscle spasm.
Risks: Burns or skin irritation if misused.
Insurance: Not covered.
Cost: $20–$50/device.
Patient Perspective: Heat pads and warm baths are commonly used for comfort. They are simple, affordable options for self-care.
Acupuncture and Dry Needling
Evidence: Limited; some use reported among patients.
Mechanism: Theoretical basis in traditional Chinese medicine and neuromodulation.
Risks: Bruising, hematoma, or bleeding; should be avoided near hypermobile joints.
Insurance: Covered for chronic low back pain in adults by Medicare.
Cost: $75–$150/session.
Patient Perspective: Some patients find acupuncture helpful for relaxation or pain management, but caution is advised, especially near unstable joints.
Herbal and Dietary Supplements
Evidence: Variable; no robust studies in hEDS.
Risks: Allergy, drug interactions, liver or kidney toxicity.
Insurance: Not covered.
Cost: Highly variable.
Patient Perspective: Supplements are frequently used, but safety and efficacy are often unclear. Discuss with a knowledgeable provider before use.
Yoga and Movement Therapies
Evidence: Patient-reported benefit, especially for relaxation and gentle mobility.
Risks: Risk of joint injury if not modified for hypermobility.
Insurance: Not covered.
Cost: $20–$30/class.
Patient Perspective: Modified or chair-based yoga may be helpful, but traditional poses can be harmful if not adapted for joint stability.
Off-Label Pharmacologic Agents (excluding marijuana)
(See Medication Page for more complete discussion of medications and Substance Use Page for information on marijuana.)
Examples: Low-dose naltrexone, gabapentin, duloxetine, tricyclic antidepressants.
Evidence: Variable and mixed; anecdotal support and small trials.
Risks: Drug side effects, interactions.
Insurance: May be covered with documentation.
Cost: Variable depending on insurance and formulation.
Patient Perspective: These medications may be considered when other treatments are ineffective. A trial-and-error approach is common due to individual variability.
Risks and Long-Term Safety
Safe: Mindfulness, heat therapy, TENS, and tailored physical therapy are generally safe.
Moderate Risk: Massage (if done gently and correctly), yoga (if modified), acupuncture.
High Risk: Chiropractic manipulations; aggressive or unspecialized physical therapy.
Unknown: Herbal therapies and energy medicine due to lack of data.
Note for Patients: Always disclose hEDS to alternative care providers and seek practitioners with experience in hypermobility when possible.
Insurance Coverage Overview
Widely Covered: Physical/occupational therapy (with limits), TENS (specific cases).
Limited or Variable: Acupuncture, chiropractic (spinal only).
Rarely or Not Covered: Massage, Reiki, meditation, herbal treatments.
Patient Tip: Check your plan’s details, and ask providers for itemized invoices if you intend to submit for reimbursement.
Patient-Centered Outcomes and Barriers
Motivations: Functional improvement, reduced pain, emotional regulation, and autonomy.
Barriers: High costs, limited insurance, lack of provider knowledge, stigma.
Reported Benefits: Many patients report improvement in function, satisfaction, and perceived control.
Emerging Programs and Interventions
In recent years, new programs have been developed to make alternative treatments more accessible to people with chronic conditions like hEDS. One such initiative is the trial of the HOPE (Helping to Overcome Pain Effectively) intervention, an online-delivered mindfulness and self-management program designed for individuals with chronic pain and mobility challenges, including hEDS. Programs like HOPE aim to address common barriers such as cost, access, and provider availability while offering evidence-informed strategies for pain management, emotional regulation, and quality of life.
Similar online or hybrid programs incorporating mindfulness, movement therapy, and educational modules are being piloted in clinical and research settings, with early data suggesting potential benefits in reducing pain-related distress and improving daily function.
Summary
Alternative and non-Western treatments are widely utilized by individuals with hEDS and may provide meaningful relief, particularly when standard treatments are insufficient. While empirical support varies by modality, the most promising adjuncts include massage (with caution), mindfulness practices, TENS, and heat therapies. Chiropractic manipulation is not recommended due to potential harm. Insurance coverage remains limited, posing barriers for many patients.
As research grows, emerging programs such as the HOPE intervention and online-delivered mindfulness hold promise for accessible, safe, and scalable support. For individuals with hEDS, these treatments may help improve comfort, autonomy, and quality of life—especially when integrated into a thoughtful, individualized care plan that includes input from knowledgeable providers and awareness of personal limitations.
