Resources

So many great resources! This list is updated as further resources are developed, discovered, and vetted by Dr. Lewan. As always, general advice (internet, books, etc.) intended for the masses is not a substitute for individualized medical care or consult with a specialist who can make recommendations based on your unique history and concerns. The following are provided as options for learning and support that may be a useful adjunct to individualized care:

 

Evidence-informed support for chronic pain/symptoms, neuroscience education and mindfulness-based practices to downregulate protective mechanisms including pain, fatigue, autonomic dysfunction, fear-avoidance and kinesiophobia:

  • Protectometer: The Explain Pain Handbook
  • Insight Timer free app with free guided meditations
    • Tara Brach: discussions and meditations on fear, compassion, mindfulness
    • iRest meditations (also available for free through Vimeo): shown in studies to improve sleep, pain, anxiety when used regularly
    • search option that can be used to find topics relevant to your health journey
  • Pain is Really Strange indeed! Find more on pain, as well as a free iRest meditation in my blog series on pain
  • Trauma is Really Strange  ... and you may notice it shares many features of pain and other heightened protective responses. For more info and individualized care, please find a trauma specialist who can offer more specific resources individualized to your needs.
  • The Body Keeps the Score a more detailed exploration of the physiological effects of trauma, often experienced as chronic ongoing trauma/stress of misdiagnosis, mistreatment and invalidation that occurs when healthcare professionals have limited resources (knowledge of "mysterious" or rare conditions, inadequate time for thorough examination/assessment/treatment or listening to their patients, etc.)
  • Coming soon... I've been asked to contribute a textbook chapter on pain specific to hypermobility and will update as soon as it is available!

Hypermobility, Hypermobility Spectrum Disorders (HSD)/Ehlers Danlos Syndromes(EDS):

Dysautonomia/Autonomic dysfunction and Postural Orthostatic Tachycardia (POTS):

Craniocervical Instability, Chiari, Syringomyelia, and Cerebrospinal Fluid Leaks: