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! More on this 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 trained in somatic practices who can offer additional support that meets your individualized 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.)
- Mindfulness-Based Stress Reduction to support the dialing down of stress physiology/threat-protection mechanisms that amplify pain
- Mindful Self-Compassion practices by Kristin Neff, PhD and Christopher Germer, PhD
- RAIN practices by Tara Brach, PhD
- Coming soon... I've contributed a textbook chapter on pain specific to hypermobility and will update as soon as it is available!
Pelvic Pain and Abdominopelvic Conditions:
Hypermobility, Hypermobility Spectrum Disorders (HSD)/Ehlers Danlos Syndromes(EDS):
- For Diagnostics: EDS society checklist or 2017 EDS International Classification Papers
- Explore Hypermobility/ Hypermobility Spectrum Disorder and the associated symptoms of Dysautonomia
- EDS Society free webinars and medical professional directory
- Dysautonomia Support Network's resource library including articles, webinars, and guides
- Caring for a loved one with HSD/EDS
- Chronic Pain Partners webinars
- Disjointed book on HSD/hEDS, excellent chapter on dysautonomia in this population
- Want to be part of research on hEDS? The genetics lab at MUSC has a patient registry that you can join.
Dysautonomia/Autonomic dysfunction and Postural Orthostatic Tachycardia (POTS):
- Dysautonomia International webinars
- Dysautonomia book
- Dysautonomia International's medical provider directory
- Chiari and Syringomyelia Foundation webinars
- Dysautonomia Support Network's resource library including articles, webinars, and guides
- Dysautonomia Support Network patient videos
- DSN's provider directory
- DSN handouts
Craniocervical Instability, Chiari, Syringomyelia, and Cerebrospinal Fluid Leaks:
- Spinal CSF Leak Foundation
- Chiari and Syringomyelia Foundation
- Laser proprioceptive exercises for chronic neck pain and/or instability