How Can Physical Therapy Help My EDS/HSD Symptoms? Leslie Russek, PT, DPT, PhD, OCS Clarkson University, Physical Therapy Dept. Canton-Potsdam Hospital, Physical Therapy Dept. A Checklist of potential physical therapy interventions For EDS/HSD is available on my web page: https://webspace.clarkson.edu/~Lrussek/hsd.html 1
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How Can Physical Therapy Help My EDS/HSD …...How Can Physical Therapy Help My EDS/HSD Symptoms? Leslie Russek, PT, DPT, PhD, OCS Clarkson University, Physical Therapy Dept. Canton-Potsdam
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A Checklist of potential physical therapy interventions For EDS/HSD is available on my web page:
https://webspace.clarkson.edu/~Lrussek/hsd.html
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Objectives1. List complaints PT may be able to address2. Outline a process for PT to evaluate you and
determine a plan of care3. Describe treatment approaches PT may use4. Describe the role of PT in long-term
management of EDS/HSD5. Explain how your PT should empower YOU to
manage your EDS/HSD signs and symptoms
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Complaints PT may be able to address• Pain: localized or widespread, including headaches• Joint instability, subluxations or dislocations• Functional limitations: gross or fine motor• Developmental delay and clumsiness• Fatigue, sleep disturbance• Postural Orthostatic Tachycardia Syndrome (POTS)• Incontinence, vaginal or pelvic pain• (Anxiety and depression)• (Gastrointestinal problems, gastroparesis)• (Immune issues)
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Why Physical Therapy?
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• PTs are experts in the movement system• Some approaches are are best provided by PT:
o Exercise, neuromuscular re-education, body mechanics, posture, ergonomics, manual therapy, modalities, braces, assistive devices…
• Most PTs are skilled in:o Pain management, pain neuroscience educationo Application of behavioral approaches to functional
activities: e.g. pacing, sleep hygiene…• You may develop a strong therapeutic relationship
with your PT, discuss problems & solutions• Some PTs have advanced training: e.g., women’s
health, visceral mobilization, etc.
Complaints PT may be able to address• Pain: localized or widespread, including headaches• Joint instability, subluxations or dislocations• Functional limitations: gross or fine motor• Developmental delay and clumsiness• Fatigue, sleep disturbance• Postural Orthostatic Tachycardia Syndrome (POTS)• Incontinence, vaginal or pelvic pain• (Anxiety and depression)• (Gastrointestinal problems, gastroparesis)• (Immune issues)
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Pain Management1. Assessment of pain type, source, perpetuation2. Education about prevention and management3. Exercise to improve quality of movement,
4. Manual therapy for alignment, tissue healing5. Taping/bracing/orthotics for alignment & quality
of movement6. Modalities for pain and inflammation
(Engelbert, 2017, Chopra, 2017)6
Pain Assessment• Use a biopsychosocial
approach• Look for contributing
factors as well as signs, symptoms, & involved tissues
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CENTRAL SENSITIZATION: Central nervous system becomes hyper-responsive; widespread allodynia
Inflammation ➔ nociception and SENSITIZATION
DEEP SOMATIC NOCICEPTION: muscle/trigger points, ligament, tendon, bursae, fascia: referred pain, other symptoms; dull cramping or aching, poorly localized.
DEEP VISCERAL NOCICEPTION:Many ‘silent nociceptors’.
• Neuromuscular re-education for motor control training, muscle recruitment, balance, relaxation.
• Aerobic exercise to restore normal pain inhibitory pathways and improve endurance.
• Neuromuscular re-education and exercise to address kinesiophobia (fear of movement) (Kernan, 2007)
Pain Management: Exercise“Exercise-induced analgesia”• Regular exercise activates nerve pathways from the brain,
stopping nerves from transmitting nociceptive information • Improves descending pain control• Decreases hypersensitivity of nerves• This process does not work properly in people who
are deconditioned/sedentary • A single bout of exercise may increase pain• Regular exercise restores proper function of exercise-induced
analgesiaLima LV, Abner TSS, Sluka KA. Does exercise increase or decrease pain? Central mechanisms underlying these two phenomena. J Physiol. 2017;595(13):4141-4150.
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Not All Exercises Are Appropriate
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• For exercise to be helpful and not harmful, it must be:o The correct exercise (for you, now)o Done correctly (proper motor control)
o At the correct dose (intensity, time/reps)o Not overstressing other joints or muscles
• There is no protocol appropriate for everyone with EDS/HSD
Doing Exercises Correctly
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• External feedback seems to improve accuracy, learning and retention compared to internal feedback. (Lauber, 2014; Lohse, 2014)
Complaints PT may be able to address• Pain: localized or widespread, including headaches• Joint instability, subluxations or dislocations• Functional limitations: gross or fine motor• Developmental delay and clumsiness• Fatigue, sleep disturbance• Postural Orthostatic Tachycardia Syndrome (POTS)• Incontinence, vaginal or pelvic pain• (Anxiety and depression)• (Gastrointestinal problems, gastroparesis)• (Immune issues)
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Joint Instability• Potential causes:
o Joint laxityo Traumao Muscle weakness, poor motor controlo Poor position sense or body awarenesso Excessive stress from tight muscleso Excessive stress from habits, postures or
◦ External focus seems to result in better retention and transfer of motor skills than internal focus
o (Lauber, 2014; Lohse, 2014)
Complaints PT may be able to address• Pain: localized or widespread, including headaches• Joint instability, subluxations or dislocations• Functional limitations: gross or fine motor• Developmental delay and clumsiness• Fatigue, sleep disturbance• Postural Orthostatic Tachycardia Syndrome (POTS)• Incontinence, vaginal or pelvic pain• (Anxiety and depression)• (Gastrointestinal problems, gastroparesis)• (Immune issues)
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Decreased Function: Manage Pain• Assessment of pain type, source, contributing
factors• Education about:
o Musculoskeletal, neurological, and psychosocial contributing factors
o Self-management of paino Orthotics, braces, environmental modifications
• Exercise to address contributing factors, motor control/coordination, aerobic conditioning
• Manual therapy, taping, modalities29
Decreased Function: Fear of Movement
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• People with EDS/HSD may be afraid of movement (kinesiophobia) due to fear of pain, injury or instability
• Decreased activity leads to decreased muscle tone, aerobic capacity, and strength, making pain and injury more likely
• Fear of movement is also linked to fatigue, perhaps through decreased activity and deconditioning. (Celletti, 2013)
• Fear of movement is a common reason people with EDS/HSD do not exercise. (Simmonds, 2017)
Decreased Function: Fear of Movement
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• PT should address this fear through gradually progressed activity and exerciseo Best if integrated with a behavioral approach
• PT should not aggravate this fear by increasing pain (Perrot, 2018)
• Good communication and partnership with a PT knowledgeable about EDS/HSD can help patients exercise more successfully (Simmonds, 2017)
Complaints PT may be able to address• Pain: localized or widespread, including headaches• Joint instability, subluxations or dislocations• Functional limitations: gross or fine motor• Developmental delay and clumsiness• Fatigue, sleep disturbance• Postural Orthostatic Tachycardia Syndrome (POTS)• Incontinence, vaginal or pelvic pain• (Anxiety and depression)• (Gastrointestinal problems, gastroparesis)• (Immune issues)
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Developmental Delay in Children• Education about contributing factors • Neuromuscular re-education (as for joint
instability)• Therapeutic exercise for functional stability,
especially in mid-range (but not excluding end range)
Complaints PT may be able to address• Pain: localized or widespread, including headaches• Joint instability, subluxations or dislocations• Functional limitations: gross or fine motor• Developmental delay and clumsiness• Fatigue, sleep disturbance• Postural Orthostatic Tachycardia Syndrome
(POTS)• Incontinence, vaginal or pelvic pain• (Anxiety and depression)• (Gastrointestinal problems, gastroparesis)• (Immune issues)
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Fatigue and Sleep Dysfunction• Assess reasons for fatigue
o Sleep disturbance due to: ◦ Pain, anxiety, poor sleep hygiene, apnea
o Deconditioning, sedentary lifestyleo Trying to do too much, not pacing, boom/bust cycleso Stress, not being able to relax and rechargeo Autonomic disorder such as POTS or orthostatic
tachycardiao Psychological factors such as depression, grief, etc.o Dieto Medicationso Other medical conditions: MCAD, fibromyalgia, etc.
o (Hakim, 2017)35
Fatigue: Managing Poor Quality Sleep
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• Pain interfering with sleepo Positioning for decreased paino General pain management
• Sleep hygiene
• Physiological quieting, relaxation training• Regular exercise• Good information at https://sleep.org
• Many people try to do too much too fast: “Start low, go slow”• Stabilize your daily routine• Start easy, e.g., muscle stretches or relaxation exercises• Select an activity/exercise you enjoy and will do consistently
o Set a baseline that you can do 5d/wk, even on bad dayso Rest after exercise, sitting, not lying down, <30 minutes
• Increase time gradually – no more than 20%/wk• Increase intensity once you can do 30 min/day• Plan for setbacks• Source: “Graded Exercise Therapy: A self-help guide for
those with chronic fatigue syndrome/myalgicencephalomyelitis.”
Complaints PT may be able to address• Pain: localized or widespread, including headaches• Joint instability, subluxations or dislocations• Functional limitations: gross or fine motor• Developmental delay and clumsiness• Fatigue, sleep disturbance• Postural Orthostatic Tachycardia Syndrome (POTS)• Incontinence, vaginal or pelvic pain• (Anxiety and depression)• (Gastrointestinal problems, gastroparesis)• (Immune issues)
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Incontinence• Education about voiding, fluid management,
urge inhibition, nocturia control• Pelvic floor muscle retraining, including
biofeedback
• Manual therapy to low back/pelvis/hip• TENS protocol for incontinence
(Neville, 2016)
• May need an women’s/men’s health specialist
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Vaginal Pain• Education about self-management• Pelvic floor muscle retraining, including
biofeedback• Electrical stimulation
• Dilators(Morin, 2017)
• May need a women’s health specialist
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Complaints PT may be able to address• Pain: localized or widespread, including headaches• Joint instability, subluxations or dislocations• Functional limitations: gross or fine motor• Developmental delay and clumsiness• Fatigue, sleep disturbance• Postural Orthostatic Tachycardia Syndrome (POTS)• Incontinence, vaginal or pelvic pain• (Anxiety and depression)• (Gastrointestinal problems, gastroparesis)• (Immune issues)
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Anxiety• Education about EDS/HSD• Assessment for POTS, education about POTS
self-management• Neuromuscular re-education & exerciseo To decrease fear of movement (Kernan, 2007)
o To calm the nervous system• Exercise: stretching muscles, relaxation, aerobico Encourage Tai Chi, qigung, Pilates, (yoga), etc.
• Manual therapy, massage (Pederson, 2018)
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Gastroparesis/Constipation• Education about
gastroparesis in EDS/HSD• Aerobic exercise• Trigger point management
• Visceral mobilization (additional training needed)
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Inflammation• Education about inflammation, neurogenic
inflammation, role of stress• Education about Mast Cell Activation Disorder• Exercise (regular aerobic exercise stimulates
immune function; Abd El-Kader, 2018)• Modalities to decrease localized inflammation
during flares: ice, non-thermal ultrasound, phonophoresis, iontophoresis
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Summary
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• Physical Therapy can address a range of concerns that are common in EDS/HSD
• There are a variety of treatment approacheso Education emphasizing self-managemento Exercise, neuromuscular re-educationo Orthotics/bracing/adaptive equipmento Manual therapyo Modalities
• Exercises must be the correct ones for you, done correctly, in the correct dosage
• Some approaches require specialized training
Your PT should empower
YOU to manage your
EDS/HSD signs and symptoms
References
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