Pain management in Ehlers Danlos Syndrome – 2015
Transcript of Pain management in Ehlers Danlos Syndrome – 2015
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Pain management in Ehlers Danlos Syndrome – 2015
Pradeep Chopra, MDDirector, Pain Management Center,
Assistant Professor, Brown Medical School, Rhode IslandAssistant Professor (Adjunct), Boston University Medical Center
Pradeep Chopra, MD 1
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Disclosure and disclaimer
• I have no actual or potential conflict of interest in relation to this presentation or program
• This presentation will discuss “off‐label” uses of medications
• Discussions in this presentation are for a general information purposes only. Please discuss with your physician your own particular treatment. This presentation or discussion is NOT meant to take the place of your doctor.
Pradeep Chopra, MD 2
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Introduction
• Training and Fellowship, Harvard Medical school
• Pain Medicine specialist• Assistant Professor – Brown Medical School, Rhode Island
• Special interest in complex pain conditions
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• A typical evaluation with me takes anywhere between 5 hours to 6 hours.
• I am going to try my best to squeeze all that in 1 hour
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Types of pain in EDS
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Types of pain in EDS
• Mechanical pain or structural pain (Nociceptive pain)
• Inflammatory pain• Nerve pain• Muscle pain. • Headaches
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Joint sense
ProprioceptionThe body’s ability to sense movement
of the joints and their position
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Proprioception – Joint sense
• The brain constantly gets information from the joints as to the exact position of the limbs in space.
• It helps us walk, use our arms, maintain our posture without tipping over.
• Protects our joints from over extending and our muscles from over stretching
• EDS – poor proprioception. Klutzy
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Proprioception
• Really important to work on improving proprioception.
• EDS’ers learn to protect and avoid injury to their joints properly by not overextending them.
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Proprioception exercises
• Juggling• Balance board or wobble board• Stork standing (stand on one leg)• Stand up paddle board (SUP)• Sitting on exercise ball• Exercise in water – walking, treading but NO swimming
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Compression garments, taping
Pradeep Chopra, MD 12
http://better‐chiropractic.com/2011/09/therapeutic‐taping‐kinesiology‐
tape/
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Neuromuscular taping (Kinesio™)
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Kinesio™ taping ‐mechanism
• Mimics the superficial layer of skin – after 10 minutes you can not feel it
• Designed to stretch• Porous – allows for drying easily. You can take a shower with it on
• The adhesive is applied in a wave like pattern to mimic the qualities of fingerprints.
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Finger print pattern
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Kinesio™ taping ‐mechanism
• The tape stimulates the sensors in the skin as we move – improves proprioception
• Helps reduce swelling
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Kinesio™ taping ‐ uses
• Reduces pain• Improves movement patterns• Relaxes muscles• Stabilizes joints• Supports weak joints• Reduces swelling
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Kinesio taping helpful for
• Neck• Upper back • Lower back – SI joints, muscles• Wrist• Shoulders• Knees • Ankles and feet
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Kinesio taping – EDS knee• A combination of two strips of
25 cm in length and 2.5cm in width along the collateral ligament (sides of the knee) using 50% tape tension applied distally (furthest) to proximal, a horizontal tape below the patella 25 cm in length and 2.5 cm in width applied with 25% tension and lastly a Y tape 30 cm in length and 5cm in width cut with 5cm in initial base applied laterally to the patella with no tape tension.
Ther Adv Musculoskelet Dis. 2015 Feb; 7(1): 3–10. doi: 10.1177/1759720X14564561 PMCID: PMC4314299 The effects of neuromuscular taping on gait walking strategy in a patient with joint hypermobility syndrome/Ehlers–Danlos syndrome hypermobility type Filippo Camerota, Manuela Galli, Veronica Cimolin,corresponding author Claudia Celletti, Andrea Ancillao, David Blow, and Giorgio Albertini Author information
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Taping for lower back in EDS
• Two tapes of 25 cm in length and 5 cm width applied with no tension to the tape, laterally to the spine from the intergluteal fold to the last dorsal vertebra with the patient maintain a lumbar flexion at 45 degrees in a standing position during the complete application
Ther Adv Musculoskelet Dis. 2015 Feb; 7(1): 3–10. doi: 10.1177/1759720X14564561 PMCID: PMC4314299 The effects of neuromuscular taping on gait walking strategy in a patient with joint hypermobility syndrome/Ehlers–Danlos syndrome hypermobility type Filippo Camerota, Manuela Galli, Veronica Cimolin,corresponding author Claudia Celletti, Andrea Ancillao, David Blow, and Giorgio Albertini Author information
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Headaches and neck pain in EDS
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Headaches and neck pain
• Headaches may be caused by neck pain• Headaches may be from
– inside the head (Migraines) or – outside (chronic daily headaches or tension type headaches)
• Treatment for both is different
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Causes of headaches 1
1. Arnold Chiari malformation2. Cervicogenic HA – from muscles3. TMJ dysfunction (aka Craniofacial pain)4. Vision – blurry5. POTS / Dysautonomia6. Tethered Cord syndrome7. Trigeminal neuralgia8. Spontaneous CSF (Cerebrospinal) leak
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Causes of headaches 2
7. Instability of the neck – Cranio Cervical Instability)
8. Atlanto – axial hypermobility 9. Cervical facet joint arthritis (joints in the
spine)10. Occipital neuralgia (nerves in the back of the head)11. Sinusitis
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Chiari malformation…..connecting
• Lower brainstem symptoms: – Nausea– Dysphagia– Throat tightness– Sleep apnea– Shortness of breath– Palpitations– Face pain– Double vision– Syncope (fainting)
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TMJ Pain
Temporo Mandibular Joint Dysfunction
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TMJ Pain
• Very closely related to neck issues• Clicking noises• Clenching, grinding• Pain with chewing• Difficulty opening mouth wide (eating an apple)
• Jaw locking up
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Trigger points for TM Joint pain
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Temporo‐mandibular joint dysfunction (TMJ)
• Present in 70%• Treatment: avoid excessive mouth opening, caution when yawning,
• orthodontist specializing in TMJ • Avoid over the counter mouth guards
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Kinesio taping for TMJ
32Kenzo Kase, Wallis Jim, Kase Tsuyoshi. Clinical Therapeutic applications of the Kinesio taping method. 3rdEdition.. 2013 Kinesio IP;LLC
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Neck pain
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Neck pain and headaches
• The most common cause of neck pain is posture
• Chin poking forward position• Correction is easy. • Before looking at other reasons, correct this first
• There are other reasons like cervical instability, Chiari malformation etc – these need to be addressed
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Poking chin posture
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Head forward or poking chin posture
• This posture can cause pain in the jaws (TMJ), face, upper back, neck
• Blurry vision (POTS, EDS, Chiari)
• Laptops• Brain Fog (POTS, Chiari,
MCAS)
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Poking chin posture /Forward head position
• Shortens the muscles in the back of the head and neck
• Weakness of muscles in front of neck (flexors)
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Managing neck pain and headaches from poor posture
• Place index finger in front of chin and push back head gently till ears are in line with shoulders
• Large monitor• Post it note on monitor to remind you• Vision correction• Manage POTS
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Different types of taping for neck pain and headaches.
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Wrists and fingers
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Muscles of the hand
• The small muscles of the hand are stressed to compensate for hypermobility
• Small intrinsic muscles fatigue easily – short, pain free sessions
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The EDS way of holding a pen
• Poor proprioception makes EDS’ers grip a pen with as many fingers as possible
• They hold the pen very tight
• Puts abnormal pressure on the muscles and joints of the hand and wrist
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Hands and wrist pain
• Damage to the 1st thumb joint (1st CMC joint)• Hold pen too tightly (poor proprioception)• Fingerless compression glove• Foam padded pen (Ableware™)• Splinting for subluxations• Please do not voluntary sublux fingers and thumbs to show off
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• Dense foam padding (Ableware®) or wrap a foam padded tape
• Fat pens are not helpful
• Compression half finger gloves
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Thumb pain
• It’s the 1st CMC joint• Hyperextension of this joint is common
• Splint should stabilize the joint but not cross the wrist crease (so as not to interfere with wrist movements)
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Muscles of the hand – proprioception training
• Weight bearing in neutral position – eyes open, eyes closed
• May take months but does make the joints more stable and ligaments taut
• Goal should be to decrease fatigue and increase proprioception – wrap coban, foam pad etc. for pens. But retrain to apply appropriate amounts of pressure.
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Splinting and braces in general
• Braces maintain joint in neutral position• Avoid hyper – extension• Braces help with joint position awareness (proprioception)
• Gradually decrease their use as you gain strength
• Kinesio taping is a good option
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Breathing difficulties in EDS
• May feel like running out of breath, need to take deeper breaths, working to breathe
• It almost feels like one has to take a breath voluntarily
• There are proprioceptor receptors in the muscles of the chest, joints of the ribs.
• Compression shirt• Taping over the ribs.
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Compression garment for breathing difficulties in EDS
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Feet and ankles in EDS
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Pain in lower half of the body
• Pay attention to feet and ankles. • If the feet and ankles are unstable, they make • The knees even more unstable, which then• Makes the hips unstable, which then• Throws the pelvis off – Sacroiliac joint pain, lumbar pain
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52http://www.cambridgefootclinic.co.nz/flat‐feet.html
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Flexible flat feet – common in EDS
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The feet in EDS
• Barefoot walking, where safe and comfortable – helps with conditioning of muscles under natural loads
• Repeated rising on tip toes – strengthens the muscles in foot and with proprioception
• Ankle raises by lifting heel (not leaning forward)
• Descend in a slow controlled way
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Footwear ‐ shoes
• Extremely important to wear proper footwear• Help with unstable ankles, hypermobile feet• Cushioned mid sole• Good, strong heel counter provides stability• Fastenings should be over the mid‐sole for better support
• Sneakers !!
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Orthotics
• Custom made orthotics• Walk Fit™• Start using them slowly – one hour a day, two hours a day…..
• Give your feet a chance to adjust
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Kinesio taping for arch of foot
Kenzo Kase, Wallis Jim, Kase Tsuyoshi. Clinical Therapeutic applications of the Kinesio taping method. 3rdEdition.. 2013 Kinesio IP;LLC 57
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Knees in EDS
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Knee ‐ patella
• The knee cap is held in place by a fine balance of thigh muscle forces
• Muscle imbalance around hips, pelvis, abnormal gait can cause pain around the patella
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• Area of pain from aHypermobile patella
60
http://www.mygeofit.com/member/Front‐Thigh‐(Quadricep)‐Exercises.html
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Knees ‐ hyperextension
• Hyper‐extension of knees• Hypermobile patella – unstable knee• Strains the ligaments inside the knee• Keep knee in mid‐range – avoid hyper‐extending the knee
• Compression knee sleeve or tights• Kinesio tape
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Hyperextension at the knees
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Hyperextension at the knees
• Avoid hyperextending the knees when standing – ‘break’ your knees slightly
• Compression knee sleeve or tights• Kinesio tape
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Compression knee sleeve
• Protects and stabilizes the knee joint by improving proprioception (joint sense)
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EDS and POTS
• For patients with POTS, a full length compression tights
• POTS – Postural Orthostatic Tachycardia Syndrome
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Kinesio taping for the knee
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Knee pain – often missed cause
• The proximal tibio‐fibular joint is on the outside of the knee.
• Like all joints it is prone to subluxations or arthritis.
• Subluxations are more common in athletes• A subluxing PTF joint affects the Peroneal nerve, which affects the side of the leg and causes a foot drop
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Knee pain ‐ Proximal Tibiofibular joint (PTF)
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Knee pain – often missed cause
• Site of pain from the proximal Tibiofibular joint
• It can inflame the peroneal nerve which causes pain down the side of the leg and even foot drop
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The TiboFibular joint – proximal and distal
• Pain along the lateral aspect of the leg below the knee
• Knee pain, especially with squatting• Pain in thigh (Ilio‐tibial tract)• Foot drop – may be present• May mimic DVT
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Ilio Tibila band (Fascia Lata Fascitis)
• The IT band is a very common cause of pain in Ehlers Danlos Syndrome
• Pain along the side of the thigh up to the knee.
• Worsened if the tibiofibular joint is unstable.
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Shoulders and upper back
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Shoulders in EDS
• Quality of proprioception decreased• One of the weakest joints in the body• Not much pain from dislocation• Pain due to
– muscle fatigue, – surfaces of the shoulder rubbing against each other,
– impingement
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Shoulders in EDS
• Intense pain from muscle spasms• Be assured that is if the shoulder is displaced because of abnormal muscle control, there is unlikely to be any harm to the structures
• Fear of not moving the shoulder will cause more harm
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Shoulders in EDS – Initial step
• Please do not voluntarily dislocate the muscle. • Improve postural awareness and correction
– Sitting on a balance Swiss ball– Holding back flat against the wall– Balance board– Balance on one leg
• Core strengthening (also improves posture and abnormal muscle tone)
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Shoulders in EDS – muscles to work on
• Pectoralis (‘pecs’)• Anterior deltoid• Infraspinatus
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Compression garments, taping
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http://better‐chiropractic.com/2011/09/therapeutic‐taping‐kinesiology‐
tape/
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Shoulders in EDS
• Avoid swimming or exercises that involve moving shoulders to extreme positions (ballet)
• Do not do many exercises at once. Do one or two at once.
• Keep them simple, so they can be done throughout the day.
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Upper back pain
• Posture, posture, posture• Correct the ‘chin poking forward’ position. (finger to the chin and push back)
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Posture correction with Kinesio tape
80Langendoen John, Sertel Karin. Kinesiology Taping. The essential step‐by‐step guide. 2011 TRIAS Verlag ub MVS Medzinverlage Stuttgart GmbH &Co. KG, Germany
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Upper back pain in women with EDS
• Sports bra with: • racer back (cross straps). • Wide straps. • Front closure• Proper fitting – recommend getting it done professionally.
• May have to consider reduction mammoplasty in severe intractable upper back pain
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Thoracic Outlet Syndrome
• Fairly common in EDS. • Pain in shoulder, and arm• It maybe because of the collar bone subluxing• It may be because of muscle spasms • Nerves (commonly) and blood vessels get pinched at the 1st rib.
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Thoracic Outlet Syndrome
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Pain patterns in Thoracic Outlet syndrome
84http://mathewhawkesphysiotherapy.blogspot.com/2013/05/thoracic‐outlet‐syndrome.html
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Thoracic Outlet Syndrome
• Physical therapy• Trigger point injections / dry needling with PT• Kinesio taping• Surgical correction
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Taping for TOS
86Kenzo Kase, Wallis Jim, Kase Tsuyoshi. Clinical Therapeutic applications of the Kinesio taping method. 3rdEdition.. 2013 Kinesio IP;LLC
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Prevention
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Prevention
• EDS’ers are more prone to tissue damage even with a minor injury
• Poor wound healing contributes to long standing issues
• Even when it does heal the injuries (especially to joints and ligaments) are not strong enough
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Preventing pain
• Do not stand on one hip or sway at hips
• Do not stand on the outside of your feet
• Do not sleep on your stomach, head turned to one side for a prolonged period
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Preventing pain
• Do not sit with legs outstretched, or with legs tucked under the buttocks ‘W’ position
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Preventing pain
• Do not sit kneeling with buttocks resting on ankles
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Preventing Pain – working at home
• Avoid repetitive activities – vacuuming, raking, filling dish washer, stirring. Change activity frequently.
• Work surface (kitchen counter, sink etc.) should be at appropriate height. Use blocks to raise your work surface
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Preventing pain ‐ shopping
• Do not carry a heavy bag hanging from a shoulder
• Do not carry grocery bags in hand, especially heavy ones. Keep them light.
• Use shopping trolley. Use wheels wherever you can
• Keep handbags light
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Preventing pain – going to the dentist
• EDS’ers wind up making more trips to the dentist
• Talk to dentist about EDS• Numbing medicine may not work or you maybe too sensitive to them
• TMJ – not to keep mouth open too long• Position of neck – prefer being in a more flat position with neck supported
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POTS – Postural Orthostatic Tachycardia syndrome
Dysautonomia
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POTS ‐ Postural Orthostatic Tachycardia syndrome
• Increase in heart rate by 30 beats/min within 10 minutes of standing
• Standing heart rate of 120 beats / min• No significant change in blood pressure• Syncope or almost syncope (fainting)
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POTS ‐ Postural Orthostatic Tachycardia syndrome
• Brain fog• Digestive problems – nausea, gastroparesis (slowing of the intestines)
• Chronic fatigue• Headaches• Blurred vision
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POTS ‐ tests
• Orthostatics ‐ preferred• Tilt table test‐ not a fan of this test
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Treatment of POTS
– Increase oral salts for Postural Orthostatic Tachycardia Syndrome (POTS).
– Increase oral electrolyte fluids– Compression tights up to thighs.– Abdominal binder.– Cardiology or Neurology consult for Dysautonomia/POTS.
– Consider a beta‐blocker such as Betaxolol or propranolol at night for Postural Orthostatic Tachycardia Syndrome and non‐restorative sleep.
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POTS ‐ Postural Orthostatic Tachycardia syndrome
Consult Dysautonomia International for more information and recipes.
http://www.dysautonomiainternational.org/
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Starting treatment ‐medicines and exercise
Start low, go slow
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Mast Cell Activation Syndrome
MCAS
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Mast cells
• Cells in blood• Normally present in blood• Contain histamine• Involved in allergy, wound healing and protection against infection
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Mast Cell Activation Syndrome (MCAS)
• Flushing• Itching• Unexplained gastrointestinal disturbance especially gastroparesis (slowing of the intestines)
• Unexplained fluctuations in blood pressure
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Mast Cell Activation Syndrome (MCAS)
• Nausea, vomiting, • stomach pains, • slowing of the gastrointestinal tract (gastroparesis)
• Low blood pressure• Syncope or near syncope• Chronic fatigue, headaches
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Mast Cell Activation Syndrome (MCAS)
• Temperature instability – hot / cold• Multiple chemical sensitivities – food, drugs, • Sensitivities to multiple drugs maybe due to fillers – changing to a different brand may help
• Dry eyes, difficulty focusing, • Hair loss• Bladder pain: Interstitial cystitis –inflammation of bladder
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Mast Cell Activation Disorder (MCAD)
• In EDS, mast cells are normal in count (not increased)
• Hyper‐reactive• May not have a specific trigger that makes the mast cells release histamine
• Brain fog• Sleep apnea
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Management of MCAS
• Anti‐histamine blockers: – Most cold medicines– Ranitidine, famotidine
• Cromolyn• Low histamine diet• avoid: sudden change in temperature, certain seasonings (except olive oil and salt)
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NC10 rule
Expectations from different therapies
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NC10 rule
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NC10 rule
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NC10 rule
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NC10 rule
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NC10 rule
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Muscle pain
Myofascial pain
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Muscle pain 1
• Often more painful than the original pain
• Muscles may tighten reflexively, guarding of a painful area, nerve irritation or generalized tension
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Treatment of muscle pain
• Treat the cause – joint pain, repetitive use
• Trigger point injections / Dry Needling
• Kinesio taping
• Stretching – very, really very gentle stretches.
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Trigger Points
• When muscles are in chronic spasm they stay taut – ‘knots’.
• They develop trigger points which trigger the muscle in to a constant state of spasm
• The trigger points can be painful when touched.
• The pain can spread throughout the affected muscle and other parts
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Trigger Points 2
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Trigger Point injection
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Dry Needling
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Manual Techniques
• Myofascial release: Gentle techniques to improve the mobility of the muscles by mobilizing the tissue around the muscle
• Muscle energy technique: Utilizes positioning of the body and using active muscle contraction to relax muscles and align joints
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Muscle Relaxants
• Try to avoid using them. Use only if having a flare up
• Cyclobenzaprine (Flexeril)• Carisoprodol (Soma)• Tizanidine (Zanaflex)• Baclofen• Benzodiazipine (Valium)
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Nerve pain
Neuropathic pain
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Nerve pain in Connective tissue disorder / EDS
• Nerve connective tissue is more fragile• Fragile nerves get over stretched when crossing or associated with hypermobile joints
• Neuropathic pain, Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD)
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Pradeep Chopra, MD
What is CRPS / RSD
• Complex Regional Pain Syndrome formerly Reflex Sympathetic Dystrophy
• Syndrome characterized by a continuing pain that is disproportionate to the usual course of any trauma or lesion.
• Usually starts after a trauma, immobilization.
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Pradeep Chopra, MD
Pain
• The pain is far more than one would expect for the type of injury
• Pain to soft touch• It may spread to other parts• One limb may have a different color or
temperature
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Management of CRPS /RSD
• Much too elaborate for this talk
• For a presentation on CRPS, please visit www.rsds.org
•
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Caution
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Orthopedic surgery
• Surgery for stabilization of joints, tendon relocation, arthroplasty etc – caution, caution
• High risk of poor healing, recurrence, adhesions, Complex regional Pain Syndrome
• Must plan carefully. Consider a surgeon who has experience with Ehlers Danlos Syndrome
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Surgery in EDS ‐ suggestions
• Surgical wounds should be closed without tension, preferably in two layers.
• Deep stitches should be applied generously and closely.
• Cutaneous stitches should be left in place twice as long and additional fixation of adjacent skin with adhesive tape can help prevent stretching of the scar.
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Caution
• Bed rest, periods of inactivity, avoiding exercise. Ehlers Danlos Syndrome patiensdecondition rapidly
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Low Dose Naltrexone (LDN)
• Naltrexone is an old drug that was used to treat addiction
• When taken in a very very low dose, has been shown to help with chronic neuropathic pain, which is part of the pain in EDS.
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LDN and EDS
• Good experience with using Low dose Naltrexone in EDS
• Helps pain• Helps fatigue• Helps most symptoms of EDS
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Opioids
• Mild doses for a short term are good for acute pain
• Not very effective in Ehlers Danlos Syndrome• Risk of increasing Mast Cell Activation Syndrome
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Cannabis – good option for EDS
• Good news – it works better than narcotics in Ehlers Danlos Syndrome
• Bad news – not FDA approved, regulations • Vaporize, topical, tincture• Pain – low THC content, higher CBD content• Low addiction potential. • Helps with pain, nausea and gastroparesis• Does not affect Mast Cell Activation Syndrome.
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Avoid
• Avoid high impact sports/activities• Avoid low environmental temperatures• Avoid prolonged sitting positions and prolonged recumbency
• Avoid sudden head‐up postural change• Avoid excessive weight lifting/carrying
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Castori M, Morlino S, Celletti C, Celli M, Morrone A, Colombi M, et al. Management of pain and fatigue in the joint hypermobilitysyndrome (a.k.a. Ehlers‐Danlos syndrome, hypermobility type):Principles and proposal for a multidisciplinary approach. Am J Med Genet A 2012b;158A:2055‐70.Pradeep Chopra, MD
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Gluten free diet
• Gluten as a protein can cause an inflammatory response in the body.
• Migraines, chronic body ache, abdominal pain, hypermobility syndromes (EDS), multiple joint pains
• Hold off on gluten foods for 8 weeks to see if it makes a difference.
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Starting treatment ‐medicines and exercise
Start low, go slow
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Service Dogs
• Trained to each person’s physical impairments• help with functioning and independence• Constant companion, will often sense its owners pain and will comfort them both physically and emotionally
• Can sense distress and call for help• Service dogs give patients a feeling of security allowing them to be more active physically and socially
• Provide stability while walking, open and close doors, switch on and off lights
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Service Dogs
• POTS – they can sense when their owner is having an episode of dizziness or seizure
• EDS and pain ‐ they protect the limb from being injured or touched
• Helps boost confidence in their owners.
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Starting treatment ‐medicines and exercise
Start very very low, go slow
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