Pelvic floor dysfunction, pain, muscle tightness, and fatigue with hEDS and joint hypermobility
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- Опубліковано 3 жов 2024
- 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 (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 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 with Ehlers-Danlos syndrome
29:10 Hypermobility and Ehlers-Danlos syndrome in men
35:00 Yoga for hypermobility
40:00 Tips on finding a healthcare professional for Ehlers-Danlos 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.”
Ehlers-Danlos syndrome involves a genetic anomaly in collagen and connective-tissue synthesis and structure. This is important 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 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 Ehlers-Danlos Society checklist: www.ehlers-dan... and the signs and symptoms: www.ehlers-dan...
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. www.amazon.com...
Norris Lab: www.thenorrisl...
FREE sexual health resources: www.drsusieg.c...
CONNECT WITH Libby Hinsley:
Websites:
www.libbyhinsl...
www.AnatomyBites.com
www.TheHypermobilityHub.com/
Instagram: @libbyhinsleypt
CONNECT WITH ME (DR. SUSIE):
Visit My Website: 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
It took me 6 years to get diagnosis with SI joint dysfunction which my right SI would lock up and my left SI would then become hypermoble. A year after that I was diagnosed with pelvic floor dysfunction. My own research then led me to understand some of the worse pain I had was coming from pudendal nerve becoming compressed, which also was affected by hypertonic pelvic floor making the pudendal nerve irritated and easy to trigger a extreme pain flare, still working on trying to get better decade plus going through this, thanks for your channel
Thank you so much for reposting this, Dr. Susie! It is greatly appreciated!
Thank you so much, for this interview. I have not been diagnosed, but at 64, the pieces of the puzzle are falling into place for me now, that I likely do have some form of this. You are correct about "knowing" being a sort of comfort.
I want to offer my observance about myself, that the severity of my symptoms and decline correlate with my exposure to mold, in my house. Problems started when I moved into the house and went away when I moved out for several years. Then came back with a vengeance when I moved back in.
How often do females with EDS have chronic tight pelvic floor issues? I have several signs of EDS but have diagnosed tight pelvic floor but that may be caused by my endo pain.
I have EDS that runs in my family and the pelvic muscle tension is consistent with what I experience. I’m male so pelvic health isn’t as big a focus as females. Hoping to get it checked out soon.
Thanks for addressing this. I have hEDS. Didn’t know until after a horribly failed hysterectomy which was done with NO suspension. Now recovering from abdominal sacralcopopexy with mesh, sutured rectopexy and perineum repair. I still have the same rectocele. I have hypertonic pelvic floor and probs with BM. I’m doing better after 2nd surgery but now 100 %
What a breath of fresh air, confirmation, and even more meaningful information. Thank you so much. Feel more hopeful.
I was 48 when I got diagnosed and had to learn about myself first and seek out a diagnosis. I had multiple issues and was gaslit. Told it was in my head, hypochondria, etc :(
This is some really impressive and important information that really makes me understand now the problems I’m having x
Ing I have long arms and didn’t know this. And fingers. I have hug hands and arm me th for my 5 ft 5 frame and my arms are longer than my legs
Thank you Susie and Libby for doing this. We hEDS diagnosed males are out there, and I'd be happy to donate my time and body to being studied if anyone wants to ask.
how has this changed over the years?how has heds affected you?
I've tried a few times to get diagnosed. My sister has it, multiple massage therapists and physiotherapists have said it seems like I have it. Docs will not test me
Do not ask for genetic test yet. Look up the Beighton Scale and test yourself against it, then take that information to your doctor and telling them you have it in the family. Good luck.
does calcium blockers for high blood pressure effect heds ?
I’m waiting 3 years for genetic testing waitlist
this is really a great conversation! underrated video