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)
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:
