Excellent summary of treating HSD/EDS-related chronic pain! I believe that pain must be treated from a Biopsychosocial approach; focused on integrative care of the biological, psychological, and social aspects of each patient.

Unfortunately, our current medical system is not designed to do this. Some advanced providers are making inroads to integrative care, but there are many hurdles to overcome. I have chronic pain related to EDS/HSD and found that managing my care team is essential to functioning my best. Learning to ask questions, and advocating for my needs has been an ongoing challenge. But, I have to be accountable for my health and that means risking feeling uncomfortable and asking for what I need.

It also means doing my own research/reading about what approaches are best for me. At some level, it doesn't seem fair to have to do all the legwork for the medical system. We've been trained to expect our medical providers to know exactly what's wrong, have a plan to fix it, and have said plan be successful... the quicker the better! But, my life experiences have not been like this. Fair or not, I'm responsible for my health and searching out knowledgeable providers.

As a patient and a healthcare educator/provider, I've tried to use my feelings of frustration and unfairness to motivate me to help myself and others. Trust me, I still have these feelings and struggle to manage them like everyone else. I reach out for support, use appropriate exercises, and practice effective psychological coping strategies... then, pick myself up and dust myself off to live to fight another day.

Hang in there folks, I believe we can do this!

A.J. Steele, PsyD, LCADC, TPS