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Welcome to the EDS Patient Resource Page

This page contains resources to help you get started with pain self-management

Patient Resources

Please consult you health care provider for assistance in using the patient resources on this page as part of your pain management plan. The resources provided below are for individual use only and are subject to copyright. 

Take an Active Role in your Care

Having EDS or G-HSD can impact all aspects of your daily life. Part of EDS treatment at the GoodHope EDS clinic involves strategies to help manage your own symptoms on a daily basis. 

 

There are many ways that you can take an active role in managing your pain with the support of the clinical team at the GoodHope EDS clinic.

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Our self management team will help guide you and support you as you learn to manage your EDS symptoms. 

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Below you will find some general recommendations for EDS care and self management. 

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Worksheets

Download a copy of the
Acceptance & Commitment Therapy (ACT) Matrix

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Click on an image above to begin download

Audio Recordings

Mindfulness Practice

Calm for Sleep

Introduction to Clinical Hypnosis

Comfort & Relief

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Materials and Resources to help you 

 Physical activity:

  • It is very important to keep moving!

    • Daily exercise (up to 30 minutes of low impact physical activity 3-5 days per week)

    • Avoid contact sports, especially in cases of know joint instability

    • Recommended activities include Pilates, swimming/water aerobics, and recumbent biking

      • Patients to engage in physiotherapy – Focus on improving strength, proprioception and general conditioning

      • Consider referral to Physiatry for detailed musculoskeletal assessment in patients with multiple musculoskeletal related concerns

 

 Pain Management:

  • Learn about and understand the mechanisms of chronic pain

  • Over the counter pain medications as tolerated (avoid daily use of NSAIDS)

  • Daily exercise

  • Mental health support with referral to psychiatry or psychology as required

  • Bracing as required (used only as needed in addition to strengthening exercises) to support unstable joints

    • Referral to comprehensive, multidisciplinary pain management specialists as required (for example, TAPMI in Toronto)

    • For chronic headaches/migraines consider using www.mychronicmigraine.ca to find a local headache specialist

    • The Arthritis Society has resources for patients with hypermobility which may include limited physiotherapy and occupational therapy support

 

 Diet:

  • Every patient is different, but some EDS/G-HSD patients find benefit from low histamine, low FODMAP, gluten or lactose-free diets

  • Increase salt (at least 3-5g) and fluid (3-5L) intake for those with orthostatic/postural symptoms (discuss with your primary care practitioner before making any dietary changes)

    • Consider dietitian referral for assistance in identifying food triggers and developing appropriate dietary plans

 

For patients with unmet GI needs consider referral to GI specialist for work-up.

For patients with evidence of autonomic dysfunction (POTS) consider referral to a Cardiologist.

For patients with evidence of/or Mast Cell Activation Syndrome (MCAS) consider referral to Immunologist.

Other Resources 

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