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. Multisystem conditions, like Ehlers–Danlos syndrome (EDS), are hard to diagnose not only because many physicians are not educated about them, but also because people with EDS 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 yogarelated injuries. She has taught yoga since 2005 and has trained yoga teachers for over a decade.

We cover topics like:

2:33 Hypermobility and EhlersDanlos syndrome, symptomatic hypermobility, hypermobility spectrum disorders, and connective tissue disorders

7:19 Diagnosing EhlersDanlos syndrome

10:10 Common symptoms of EhlersDanlos syndrome

15:05 Impacts on the urogenital tract and muscular tightness

22:30 How to manage chronic pain with EhlersDanlos syndrome

29:10 Hypermobility and EhlersDanlos syndrome in men

35:00 Yoga for hypermobility

40:00 Tips on finding a healthcare professional for EhlersDanlos syndrome

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

EhlersDanlos syndrome involves a genetic anomaly in collagen and connectivetissue synthesis and structure. This is important when considering concerns in your pants, because the pelvic region and urogenital system are made up of collagenrich tissues (like the bladder and pelvic ligaments).

With EDS, wherever there’s connective tissue, instead of having taught tissues, the tissue sags and increases chances 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 EDS is a compensatory mechanism for a lack in joint stability and muscle strength, treatment plans start with unwinding tension while also building 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 EDS:
There’s a wide spectrum of symptom severity with EDS. For some, symptoms magnify quickly after surgery, viral infection, or changes in hormones. On average, it takes 10 years to diagnose.

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

Refer to the EhlersDanlos Society checklist: https://www.ehlersdanlos.com/hedsdi... and the signs and symptoms: https://www.ehlersdanlos.com/whatis...

OTHER RESOURCES:
Libby’s book: Yoga for Bendy People: Optimizing the benefits of yoga for hypermobility, explores how people with joint hypermobility can avoid injury and use the tools of yoga to support thriving. The book is for all yoga teachers as well as bendy practitioners. https://www.amazon.com/YogaBendyPeo...

Norris Lab: https://www.thenorrislab.com/research...

FREE sexual health resources: https://www.drsusieg.com/resources

CONNECT WITH Libby Hinsley:

Websites:
https://www.libbyhinsley.com/
www.AnatomyBites.com
www.TheHypermobilityHub.com/

Instagram: @libbyhinsleypt

CONNECT WITH ME (DR. SUSIE):
Visit My Website: https://drsusieg.com/
Instagram:   / dr.susieg  
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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.

#EDS #yoga #hypermobility #fatigue #chronicpain #education #health #pelvicpain #pelvicfloor #pelvichealth #pelvicfloorexercises #diagnosis #ehlersdanlos