Substance Use in hEDS: Alcohol, Marijuana, etc.

Individuals with hypermobile Ehlers-Danlos (hEDS) often face complex health challenges that affect physical function, emotional wellbeing, and access to care. These factors contribute to an increased risk of substance use—including alcohol, marijuana, and illegal drugs—often as a form of self-medication for pain, anxiety, insomnia, or trauma-related distress.

Prevalence of Substance Use in hEDS

People with hypermobile Ehlers-Danlos syndrome (hEDS) are more likely to experience substance use and substance use disorders (SUDs) than the general population. A retrospective analysis of 4,294 individuals with Ehlers-Danlos syndrome (EDS) found that

• Opioid prescriptions were received by 27.5% of children and 62% of adults with EDS, compared to 13.5% and 34.1% of matched controls

• Alcohol and tobacco misuse are also more prevalent, though exact rates in hEDS are unknown

• Polysubstance use (use of more than one drug or substance simultaneously) is common and correlates with higher pain levels and functional disability

Psychiatric disorders—such as anxiety, depression, PTSD, and ADHD—occur in 42–87% of people with hEDS and are well-established risk factors for substance misuse. Women (who make up the majority of hEDS patients) may be particularly vulnerable to underdiagnosis and more severe consequences from substance use.

Prevalence of Substance Use in hEDS

Effects of Substance Use on hEDS Symptoms

Substance use can alter the course of hEDS symptoms—including pain, fatigue, and joint instability—in unpredictable ways. While some report short-term relief, long-term outcomes are often negative.

Risk Factors for Substance Use in hEDS

• Chronic pain and symptom burden

• Psychiatric comorbidities (anxiety, depression, PTSD, ADHD)

• Functional disability and fatigue

• Early trauma, bullying, or parental dysfunction

• Social isolation and reduced mobility

• Family history of addiction

• Early adolescence and young adulthood

• Intersectional vulnerability (being part of more than one marginalized group - e.g. having hEDS and also being a person of color, LGBTQ+, or low-income)

Demographic Patterns and Disparities

• Age: Adolescents and young adults with hEDS are most vulnerable to initiating substance use. Older adults have higher health risks from alcohol and prescription drugs.

• Gender: Women progress more quickly to dependence and often have more severe outcomes, despite lower use rates.

• Race/Ethnicity: White and Native American individuals show higher prevalence, but minority groups experience more diagnostic and treatment barriers.

• Intersectionality: Risk is magnified for individuals with multiple marginalized identities (e.g., Person of Color, LGBTQ+, disabled, rural).

Potential Positive Uses of Marijuana in hEDS

While clinical data are lacking, some individuals with hEDS report symptom relief from marijuana. Benefits vary by strain, route of administration, and underlying psychiatric vulnerability.

Cautions

• Alcohol: Worsens fatigue, judgment, and physical coordination; increases fall risk.

• Marijuana: High-THC strains may worsen anxiety or dysautonomia; increases risk of sedation and medication interaction.

• Illegal Drugs: Associated with poor functional outcomes, cardiovascular complications, psychiatric crisis, and mortality.

Drug Interactions with Medications Commonly Used by People with hEDS

Many medications frequently prescribed in hEDS interact with alcohol, marijuana, or illegal drugs. These interactions may increase sedation, raise drug levels, or exacerbate adverse effects.

Drug–Substance Interactions in hEDS

Clinical Management and Guidelines

• Screening: Routine screening for substance use, psychiatric symptoms, and maladaptive coping using validated tools.

• Brief Interventions: Motivational interviewing, behavioral coaching, and harm-reduction conversations.

• Pharmacotherapy:

  • Opioid Use Disorder: Buprenorphine, methadone, naltrexone

  • Alcohol Use Disorder: Naltrexone, acamprosate, disulfiram

  • Stimulant Use Disorder: Bupropion, mirtazapine (limited evidence)

• Psychosocial Interventions: CBT, ACT, contingency management, peer support, and trauma-informed care

• Multidisciplinary Integration: Pain management, psychiatric support, addiction medicine, physical therapy

Long-Term Outcomes of Substance Use in hEDS

Functional Outcomes and Relapse Rates

Chronic pain, fatigue, and mental health symptoms contribute to long-term impairment. Among people with hEDS and SUDs

• Quality of life is consistently lower

• Relapse rates may reach 70% over six years

• Risk of relapse increases with early substance use, depression, and poor pain control

Older adults may fare better due to improved coping strategies, but overall prognosis is often guarded.

Pediatric and Adolescent Outcomes

Youth with hEDS and comorbid SUDs are at high risk for

• Persistent substance use

• Psychiatric comorbidity

• Functional decline

• Relapse within 6 months of treatment (in up to 60–80%)

Treatment must be developmentally tailored and family-centered. However, these supports are often lacking for rare disease populations.

Health Disparities and Barriers to Care

Underserved groups with hEDS face multiple barriers

• Insurance gaps

• Lack of trained providers

• Geographic and transportation obstacles

• Cultural and language mismatches

• Provider bias and systemic stigma

Addressing these disparities requires public health investment, workforce development, and integration of behavioral health into chronic care.

Summary

People with hypermobile Ehlers-Danlos syndrome are at elevated risk for substance use and substance use disorders due to chronic pain, fatigue, psychiatric comorbidity, and trauma exposure. Marijuana and alcohol are the most commonly used substances, often reported as self-treatment. While some symptom relief is described, long-term use carries significant medical, psychological, and social risks.

Clinicians should routinely screen for substance use, especially in adolescents, women, and people with psychiatric diagnoses or trauma histories. Integrated, multidisciplinary care is essential—addressing pain, mental health, and substance use together. Harm reduction, compassionate care, and early intervention can improve outcomes and reduce disparities in this vulnerable population.