Dr. Chopra began by describing that pain in EDS generally comes from four sources:  nerves (neuropathic), muscles (myofascial), joints (nociceptive), and headaches.  He described how EDS causes each of these in turn.

Muscles are held together by fascia, which is made of collagen.  Muscles spasms and knots develop to compensate for the unbalanced and "wobbly" surrounding joints.  Myofascial pain is a chronic form of muscle pain.  When muscles are in spasm, they will develop knots (knots are actually minuscule tears in the muscle that release calcium and cause further contraction).  They will also develop trigger points that cause additional spasms.  These trigger points are painful and sensitive areas that can cause referred pain to other areas in the body.  Trigger point injections work to release the muscle contractions--when a needle is places into the muscle, it will let go.  Dry needling is one technique, however, Dr. Chopra recommends using a numbing medication.  Manual techniques to stop contraction include myofascial release, muscle energy technique, strain-counter strain, and craniosacral therapy.  Muscle relaxants can be used, but Dr. Chopra was not a huge fan of them (not as a long term solution, anyways), as they cause decreased tone and lethargy.  

Nerve pain (neuropathic pain) in those with EDS is attributed to the fact that nerves are made of connective tissue.  This tissue is more fragile in EDSers, and the fragile nerves become over-stretched over time.  Individuals with EDS also tend to suffer from small fiber neuropathy and complex regional pain syndrome (CRPS).  In some cases, the nerve pain could be caused by a mitochondria disorder.  The medications suggested by Dr. Chopra included gabapentin, pregablin, duloxetine, milnacipram, and antidepressants (tricyclic and SNRIs).  SSRIs do not work for nerve pain.

Headaches and neck pain become a problem in EDSers due to cerebrovascular reactivity--i.e. the blood vessels in the head are sensitive.  Those with EDS are also prone to migraines and to increased intercranial pressure.  Headaches may be from inside the head (migraines) or outside the head (chronic and tension).  The treatment for each is different.  There are many causes of neck pain in EDSers including C1-C2 instability, kyphosis of the neck, degeneration of neck disks, cranio-cervical instability, and chiari.  For migraines, Dr. Chopra suggested that EDSers take abortive medications such as triptans.  He also mentioned TMJ pain causing headaches.  He recommended avoiding OTC night mouth guards (have custom ones made), and to tell yourself not to clench teeth at night before you fall asleep.  

Dr. Chopra made some suggestions for the prevention of pain, including:
  • do not stand on one hip or sway hips
  • do not stand on outside of feet
  • do not sit in W formation 
  • do not hyperextend knees
  • avoid repetitive activities
  • keep work surfaces at an appropriate height
  • use soft mattress
  • use feather or memory foam pillow
  • use grocery cart instead of bags
  • keep handbags light
  • keep clothing loose and light
  • wear bras with wide straps and cross over straps
  • wear light and soft shoes, use orthotics
Dr. Chopra mentioned low dose Naltrexone.  This medication blocks the effects of opioids (opioid antagonist).  It is beginning to be used for autoimmune disorders to help with pain.  However, he has found that it helps with EDS patients as well.  He gives doses normally starting at 2mg and increasing to 4.5mg per day.  Dr. Chopra also recommended topicals, however, EDSers must make sure that ActiveMas or DMSO are added to the topical in order for it to penetrate the 

Michelle K
3/8/2014 12:39:08 am

Thank you for posting this. He had really very useful and practical information. I just heard his talk on edsaware. It was much longer and it was really very useful. I think he is going to do a part 2 to the talk.


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    Amie K.

    EDS warrior.  Find me on Twitter and Inspire as LilacZebra.  Questions, comments, and/or suggestions?  Email me


    August 2013