Chronic pain, muscle tightness, and fatigue are common complaints for those with Ehlers–Danlos syndrome (EDS); an inherited condition that can take over 10 years to diagnose.

In this episode, Libby shares why the specialty model of medical care leaves many health concerns undiagnosed. Multi-system conditions, like Ehlers–Danlos syndrome, are hard to diagnose not only because many physicians are not educated about them, but also because people with Ehlers–Danlos syndrome experience vague clusters of symptoms that don’t fit within a specific medical specialty, leaving the majority of concerns undiagnosed or left with random and overlapping diagnoses.

Libby Hinsley is a Doctor of Physical Therapy and Certified Yoga Therapist specializing in the treatment of chronic pain, hypermobility disorders, and yoga-related injuries. She has taught yoga since 2005 and has trained yoga teachers for over a decade.

We cover topics like:

2:33 Hypermobility and Ehlers-Danlos syndrome, symptomatic hypermobility, hypermobility spectrum disorders, and connective tissue disorders

7:19 Diagnosing Ehlers-Danlos syndrome

10:10 Common symptoms of Ehlers-Danlos syndrome

15:05 Impacts on the urogenital tract and muscular tightness

22:30 How to manage chronic pain capabilities with Ehlers-Danlos syndrome

29:10 Hypermobility and Ehlers-Danlos syndrome in men

35:00 Yoga for bendy people

40:00 Tips on finding a healthcare professional for Ehlers-Danlos syndrome

I love how Libby reminds us why getting a diagnosis is freeing: because when you understand your physiology, you can learn how to approach your life without fear of the “what if.”

Ehlers-Danlos syndrome involves a genetic anomaly in collagen and connective-tissue synthesis and structure. This is important to recognize when considering concerns in your pants, because the pelvic region and urogenital system are made up of collagen-rich tissues (like the bladder and pelvic ligaments).

With EDS, wherever there’s connective tissue, instead of having taught tissues, the tissue sags and creates an opportunity for pelvic floor prolapse, urinary and fecal incontinence, anal fissures, vesicoureteral reflux, recurrent urinary tract infections, cryptorchidism, hypogonadism, testicular torsion, and tight foreskin.

Because muscle tightness in Ehlers-Danlos syndrome is a compensatory mechanism for a lack in joint stability and muscle strength, treatment plans start with simultaneously unwinding tension while building a foundation of functional strength. Before training and strengthening muscles, it’s important to allow the muscles to relax first, since an already activated and contracted muscle can’t contract anymore.

How and why to seek a diagnosis for Ehlers-Danlos syndrome:

On average, it takes 10 years, leaving many suffering for a prolonged time. There’s a wide spectrum of symptom severity for people with Ehlers-Danlos syndrome. For some, the symptoms magnify quickly after surgery, viral infection, or changes in hormones (like during or after pregnancy).

There are 14 types of Ehlers-Danlos syndrome, with Hypermobility Ehlers-Danlos syndrome (hEDS) being the most common. 13 of the types are diagnosable with a blood test, while the hypermobile type is diagnosed with a clinical evaluation.

For healthcare providers and practitioners, rare conditions like Ehlers-Danlos syndrome are a reminder to check assumptions when considering a default diagnosis and to think outside your patterns of diagnosing by really considering all the symptoms in front of you.

Refer to the Ehlers-Danlos Society checklist: https://www.ehlers-danlos.com/heds-diagnostic-checklist/ and the signs and symptoms: https://www.ehlers-danlos.com/what-is-eds/

There are many conditions that are commonly diagnosed with those who have Ehlers-Danlos syndrome. The EDS classification provides more information about these conditions https://www.ehlers-danlos.com/2017-eds-classification-non-experts/

RESOURCES:

Libby’s new book — Yoga for Bendy People: Optimizing the benefits of yoga for hypermobility — explores how people with joint hypermobility can avoid injury and instead, use the tools of yoga to support their thriving. The book is for all yoga teachers as well as bendy practitioners. Libby is also the co-founder of Anatomy Bites, a monthly membership for yoga teachers who want to learn anatomy in a fun, supportive, and highly relevant way. Get the book here: https://www.amazon.com/Yoga-Bendy-People-Optimizing-Hypermobility-ebook/dp/B0B169BHLF

Free sex and pelvic pain resources https://drsusieg.com/resources-for-pelvic-pain-in-men

Online Pelvic Pain Relief Program for Men https://drsusieg.com/pelvic-pain-in-men-online-program

Norris Lab: https://www.thenorrislab.com/research/ehlers-danlos-syndrome

CONNECT WITH Libby Hinsley:

Websites:

https://www.libbyhinsley.com/

www.AnatomyBites.com

www.TheHypermobilityHub.com/

Instagram: @libbyhinsleypt

CONNECT WITH ME (DR. SUSIE):

Website: https://drsusieg.com/

Instagram: https://www.instagram.com/dr.susieg/

15-minute call: https://drsusieg.com/pelvic-pain-specialist-15-minute-call

Disclaimer:

This information is not intended to substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a healthcare professional with any questions you may have regarding treatment, medications/supplements, or any medical diagnoses. This information is intended for educational purposes only and is in no way to substitute the advice of a licensed healthcare professional.