Exercise 101
General tips for exercise…
Be kind to your body: It’s talking to you, listen.
“Start low, go slow!”: Due to the likelihood of excess joint movement, first consider exercises on your back, side, tummy then move to sitting, standing, moving.
Intensity: submaximal, low resistance, high rep, may or may not be pain free
Isometrics: stay in safe range of motion, mid rangeGoal is to improve static resting muscle tone (so secondary stabilizers don’t have to work as hard) and dynamic muscle tone/strength (to maximize functional performance and endurance)
Aerobic exercise:Aquatic: particularly beneficial for decreased gravity, increased compressive forces, ability to graduate resistance as tolerate, Recumbent bike: before upright treadmill, bike, elliptical, stepper
Muscle spasms: If you have a muscle in spasm, look for an adjacent hyper-mobile joint. Stabilize joint first, then address muscle spasm.
Flow of PT session: Try to batch exercises in each position to limit positional changes.
Hyperalgesia: People with hEDS appear to be hypersensitive to painful stimuli, that is, they feel more pain than a non-hypermobile individual in response to the same input. This is likely due to their sensitive central nervous system processing pain differently.
Braces: Try to “unlearn” the concept that braces and splints as well as usage of assistive technology or mobility aids weaken supporting structures. Sometimes patients with EDS need the devices to perform an activity without pain, to prevent or delay onset of pain or to increase tolerance to activity. Remember, their anatomical support structures don’t function as they may be expected to function so they may need the supportive device to function with less pain and greater efficiency.
Triggers: Spend time learning to identify triggers (postures, activities, positions, lifestyle choices) that may be worsening pain.
Ergonomics and Body Mechanics: Review sitting, standing, driving, cooking, cleaning, walking, self care, etc.) thoroughly for possible triggers
Stretching: Tend to have tendons and ligaments that don’t properly resist loads. Avoid movement through end range. Focus instead on proximal instability. If muscle length must be addressed, consider myofascial release, soft tissue mobilization, rolling or astym/device modulated soft tissue work.
GI issues: Don’t discount the GI issues (constipation, gastroparesis, IBS, reflux, abdominal pain) as they may be quite severe and affect functional performance
Transfers: May need instructions for bed mobility, floor to stand, sit to stand, toileting, in/out of car to avoid weight bearing in weakened positions
Proper form and supervision: Patients have spent a lifetime learning how to compensate for weakness and instability. They will need lots of supervision of prescribed exercises to maximize therapy.
Pacing: Learn how to pace daily/weekly activities to avoid boom and bust cycle, build in rest periods
POTS: do not discount disabling POTS symptoms. Therapy may need to focus on that first to maximize outcomes in clinic and with HEP.
Psychosocial: look for support groups, accountability partners, other suffers to validate your pain. Be open to learning about the mind/body connection to heal and feel less pain.