EDS Teen Program Donna Olivero, PT PRC
Ehlers Danlos Syndrome EDS- A Multi-system Disorder Pain-Intense and Unique. Theorized to originate from various body systems Sympathetic Nervous System: fight or flight Parasympathetic System: rest and digest
Effects of lack of collagen in our bodies and hits from our environment feed the sympathetic overload We can focus on ways to minimize the overload that can lead to sleep problems, more pain, and fatigue.
With EDS, the body has to work overtime to remain functioning and balanced Our current culture: The good: Medical research, earlier diagnosis Not so good: Lack of reciprocal movement effects respiration and alignment. Electronics: sedentary posturing, overuse of small joints, little peripheral visual input
Ribcage and Respiration If body is not breathing correctly, it will adjust itself to allow more airflow: Over reliance on cervical muscles to lift ribcage. Respiratory diaphragm out of position leads to spinal alignment problems: body relies on superficial, rather than deep muscles for alignment. The true core is not washboard abs! True core is diaphragm, transverse abdominus, and pelvic floor muscles
Alignment and Stability Add stability wherever we can: Footwear Reference centers Mouthguards, dental devices Good postural habits Exercise
Flipflops: Enemy in disguise. Comfort with no stability
Footwear option: Athletic shoe with good orthotic
Better footwear option: High stability athletic shoe
Components of a Good Shoe Heel stable: Inflexible heel counter; heel will not slide around or come up out of shoe when walking Ability to feel arch as you step through Flexibility at toe box. Should be able to feel big toe push off, and small toes should flex comfortably
Dental devices/mouthguards There are multiple connections between jaw, neck, and cranium. Headaches and neck pain may improve with proper teeth and jaw alignment Adding stability with a dental device can reduce spasm and improve alignment
Seated Posture Feel sitz bones Neutral pelvis with balanced spinal forces Solid chair back can help alignment Feet grounded, flat on floor. Occasional position change Ok Small towel at base of spine may help keep pelvis in position
Too much flexion: forward head. Overstretch of back muscles and ligaments
Too much extension: Overuse of back extensors to hold body up
Good alignment
Standing Posture Good standing posture starts with good footwear Unlock knees (may have to work on this over time). Spend a little more time unlocked each day Due to our heavier visceral organs on the right, most people shift weight onto the right leg more than left. Try to keep weight evenly distributed
Not Good. Knees locked. Body hanging on back extensors
Good standing posture. Knees unlocked. Improved weight distribution
Bracing Bracing does not weaken muscles Bracing can align joints so muscles are lined up to contract more efficiently
Taping Taping can add extra support. Type of tape may need consideration: Allergies to latex Strong adhesive not good for sensitive skin
Adding Stability with Exercise Stabilizing with deep core muscles is essential with EDS Our true core: 1. Respiratory diaphragm 2. Transverse abdominus 3. Pelvic floor muscles Deep breathing exercises can be the first step in exercising when experiencing severe pain Deep breathing dampens sympathetic response, relaxes spasm. Positions respiratory diaphragm more optimally and allows good lymphatic flow Exercises can be progressed keeping the abilities of each individual in mind. COMFORT is extremely important
Pillows and towel rolls can add needed points of reference for isometric exercise and provide comfortable sensory input
Postural Restoration Institute: Modified Seated Bar Reach
Postural Restoration Institute: Supine Hooklying T8 Extension. Pelvic stability, proper airflow, and shoulder stability
Postural Restoration Institute: Supine Triceps Extension
Supine Serratus Anterior
Postural Restoration Institute: 90/90 Hip Lift Pelvic positoning with beginning weightbearing and proper airflow
PRI: 90/90 Hip Lift with Balloon
PRI Wall Squat with Balloon without Arm Reach
PRI: Standing Squat with Chair
Weightbearing into shoulders without Stressing wrists, hands and knees
Safely increasing the Exercise Challenge Stationary bicycle: modify pedaling Treadmill: Walk uphill Aquatics: Many benefits of exercising in water, but water is resistance, so may need gradual progression Squatting: Good for deep stability and intestinal motility but should be done with good alignment and stability (definitely not an entry level exercise!)
Pull rather than push pedals
Walk on an incline for Improved spinal flexion and recruitment of gluteals
Standing squat
What should I avoid? Extremes of posturing: Don t entertain friends with a show of your extreme flexibility! Avoid repetitive movements: eg.: getting out of car on the same leg each time, reaching with seatbelt with same arm, using thumb for text messages Excessive Screen Time: Static poor posturing, repetitive movements with small joints, static visual input.
Conclusion Even with EDS, our bodies have the capacity to heal and be well. We must try to eliminate the stressors on our bodies as much as we can. Don t stop moving even when pain tells us not to move Be encouraged and try to encourage others
Thanks to: The Postural Restoration Institute 5241 R St. Lincoln, NE 68504 www.posturalrestoration.com