Physical Activity, Trips, Events

What you need to know

EDS is different for each person.  An individual with EDS may require no accommodations or many.  Individuals may require a 504 plan. 

An alternative health related credit should be provided if PE accommodations are not possible. Children with dysautonomia may have difficulty in extreme temperatures and may require air conditioning on very hot days and may need to avoid very cold temperatures.

If you live in New England (USA) and qualify, Northeast Passage offers Therapeutic Recreation and Adaptive Sports programming.

With Hypermobile EDS:

  • Learning to protect the joints will help prevent further injury and keep individuals active
  • Individuals should participate in activities that do not cause joint pain and finding less painful ways to move and perform certain tasks
  • Avoiding activities that overextend or lock joints 
  • Frequent overextension of joints can cause traumatic arthritis
  • Joint stability can be improved through exercise programs to strengthen muscles
  • Low resistance exercise may increase muscle tone
  • Important to increase both core and extremity strength
  • Position sense may be off in some of these individuals
  • If finger and hand strain occurs, may need writing adaptions
  • Non weight bearing exercise promotes strength and coordination

NOTE: With Classical EDS there will need to be a much higher vigilance for injury because of the skin fragility. 

What you can do

Non weight bearing exercise

  • Swimming/water exercises
  • Walking
  • Biking
  • Low impact aerobics
  • Core toning exercises

Physical therapy

  • Myofascial release provides short term relief of pain
  • Heat, cold, massage, ultrasound, electrical stimulation, acupuncture, biofeedback, and relaxation also may help
  • Low resistance muscle toning exercise may improve joint stability
  • Exercises that promote improved proprioception (position sense) or balance are important

Assistive devices

  • Braces to improve joint stability
  • Wheelchairs/scooter may help relieve stress
  • Suitable mattress to improve sleep
  • May wear soccer pads or ski stocking to protect skin from bruising  during activities

Pain medication

  • Mild to moderate:
    •  As needed medication may be sufficient
  • More significant pain
    •  May require higher doses and multiple medications
  • Prevention and control of pain is important

Occupational therapy

  • Teach joint protection strategies
  • Adjust chair/desk
  • Ring splints to stabilize finger joints
  • Wrist or wrist/thumb braces for small joint instability
  • Neck collar
    • May help with neck pain and headaches
  • Wheelchair/scooter
  • May require accommodations in school
    • Use of elevator
    • Extra time in halls

Avoid the following

  • Joint hyperextension
  • Resistance exercises which can make joint instability and pain worse
    • Resistance bands may not be effective
  • Isometric exercises, which can be problematic with too much resistance
  • High impact activity increases risk for                                                   
    • Subluxation/dislocation
    • Chronic pain
    • Osteoarthritis
  • Chiropractic adjustment with caution
  • Crutches and canes may put increased stress on upper extremities
  • Certain activities
    • Weightlifting
    • Running
    • Contact/ fighting sports
      • Football
  • May not be able to lift books/heavy backpacks