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EDS Conference: Chronic Pain


From Dr. Henderson's slides

Management of Chronic Pain

Dr. Pradeep Chopra (slides here)


First, figure out cause of pain

  • Ex: shoulder pain could be subluxation, muscle spasm, pinched nerve (or combo)

  • → treatment for each would be different

  • Microtrauma -- when you use your joints repetitively there is microscopic tissue breakdown (In EDS, tissue breakdown is faster and healing is slower)

  • For treatment → slow down/pace yourself, don't stretch or use full range of motion, avoid sitting in uncomfortable positions, repetitive motions, etc

  • Macrotrauma -- dislocation, subluxation, fracture, etc

Use a mixture of treatments

  • Ex: brace the joint, strengthen the surrounding muscles, NSAIDS and topical meds

  • Complications from POTS/MCAS, treatments for fatigue, mitochondrial dysfunction

  • muscle spasms -- don't use muscle relaxants, use Sinemet 25/100mg


Common causes of Headaches in EDS:

  • Migraines, chiari malformation, cervicogenic (from muscles), TMJ, POTS, low or high intracranial hypertension, craniocervical instability

  • "My head feels too heavy to hold up" → chin-forward posture, correct with PT (check for instability and chiari malformation first)

  • Poor posture due to POTS, loose spine ligaments, c-spinal instability → treat those

  • Upper back pain → posture, shoulder instability, rib subluxation, repetitive strain injury

  • shoulder stabilizing brace (or wide-strapped racer back sports bra) → helps TOS and back/shoulder pain

  • Shoulder pain, Thoracic Outlet Syndrome → exercises, stabilize joint, Kinesio tape

  • "My whole head hurts, I see double, and I can hear my heart beat in my ears" Idiopathic Intracranial Hypertension (IIH) → raised pressure in the head, double vision or light-sensitivity, pulsatile tinitus (pulsing in ears), could be due to narrowing blood flow in head (venous sinus stenosis)

  • Diagnosis: spinal tap, eye exam, MR venography

  • Treatment: meds, shunt, stent

  • "My headache gets worse when I stand and almost goes away when I lie down" → Low pressure in the head, Spontaneous CSF Leak

  • Avoid spinal taps/injections unless absolutely necessary, drink more fluids, abdominal binder, epidural blood patch (may need to repeat)

  • Can cause overcompensation (i.e. IIH)

  • Treatment: stop the leak! If headaches persist, check for increased pressure (IIH)

  • Cranio Cervical Instability (CCI) → loose ligaments in neck, tense muscles

  • Symptoms: neck pain/stiffness, headaches, dizziness, fatigue, poor sleep, nausea, poor vision, anxiety, lightheaded, poor balance, difficulty swallowing, paresthesia in face

  • Diagnosis: upright MRI (see slides for details)

  • Management: neck strengthening exercises, hard cervical collar, surgery (if necessary)

  • Abdominal pain → could be POTS/MCAS, slowing of stomach (gastroparesis) or intestines, SIBO, MALS (rare)

  • Treat underlying issue, low FODMAP and/or low-histamine diet, compression gear, reclining before/during/after meals,

  • Spinal Instability → thoracic, lumbar, SIJ, kyphosis (spine backwards), scoliosis, etc. **Check for tethered cord syndrome

  • Unstable joints cause muscles to spasm

  • Treat with postural correction, brace specific joint, compression garments, muscle strengthening

  • Tethered cord syndrome -- neurgenic bladder, low back pain, leg weakeness and sensory loss, musculoskeletal abnormalities

  • Ribs -- difficulty breathing, rub subluxation, all tests for heart/lungs normal

  • **each rib has 3 joints in back

  • Hands/fingers -- low proprioception leads to gripping weirdly/tightly

  • use braces, splints, foam grips, compression gloves

  • Lower-extremity pain → instability in any joint (ankles, knees, hips, SIJ, lumbar spine) can throw off the rest (see slides for management details)

  • Lower pain leg, keep tripping on feet → could be inflamed peroneal nerve from tibiofibular joint

  • Wear ankle brace like SpryStep

  • (see slides for more: exercises, orthotics, shoes, etc)

  • SIJ -- common cause of low back pain

**If the doctor is skeptical of EDS, try to go somewhere else

See slides for lists of medications to try



Diagnosis of Headaches

Dr. Fraser Henderson (slides)


In-depth look at the following:


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