Bendy Bodies with Dr. Linda Bluestein

Why are so many women with hypermobile EDS, mast cell activation syndrome (MCAS), and dysautonomia told their symptoms are “just anxiety,” and how do you tell real anxiety from a body-driven feeling of dread?
In this episode of the Bendy Bodies Podcast, Dr. Linda Bluestein talks with Dr. Tracy Shervell, a board-certified high-risk OBGYN who spent years being dismissed before finding answers for her own complex chronic illness.
Dr. Shervell explains how hormonal shifts and mast cell instability can release histamine that physically feels like anxiety, why women are especially vulnerable to having symptoms written off, and the exact language you can use to be taken seriously without being boxed in by an “anxiety” label. She and Dr. Bluestein talk candidly about medical trauma and the PTSD that can linger even after the right diagnosis, how to present a long list of symptoms without overwhelming your doctor, and the signs it’s time to “break up” with a provider. The conversation then opens the door to hormones, perimenopause, menopause, and PMDD, including why estrogen destabilizes mast cells while progesterone calms them, the viral Allegra and Pepcid trial, why hormone therapy must be approached carefully if you have MCAS, and how to actually find a menopause-certified provider.
Takeaways:

• You feel anxious, but it seems to start in your body, not your mind.
• Could hormones and histamine be the real driver, and how do you explain that to a skeptical doctor?
• What exact words can you say when a doctor writes you off as “just anxious”? Dr. Shavel offers scripts that can shift the whole appointment.
• Why do estrogen and progesterone pull mast cells in opposite directions, and what does that mean for your worst symptom days?
• Why do so many women swear by an over-the-counter Allegra and Pepcid combo for PMDD? It’s a trial, not a treatment, and here’s the difference.
• Can hormone therapy help if you have mast cell activation, or backfire? Why dose and ratio can make or break it.

Want to learn more about Dr. Tracy Shervell?
Instagram: @tracyshevellmd
Website: https://www.tracyshevellmd.com/
Want more Dr. Linda Bluestein, MD?
Website: https://www.hypermobilitymd.com/
YouTube: https://www.youtube.com/@bendybodiespodcast
Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠
Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠
X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠
LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠
Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/
Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd
Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start
Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.
Join YOUR Bendy Bodies community at ⁠⁠https://www/\.bendybodiespodcast\.com/⁠⁠.
Want to learn more about the UVA EDS Center?
For Appointments and Questions: RUVAEDSCenter@uvahealth.org
UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic
UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq
UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health
YOUR bendy body is our highest priority!⁠⁠
Learn more about Human Content at ⁠⁠⁠http://www/\.human-content\.com⁠⁠⁠
Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠
Part of the Human Content Podcast Network
Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today!
FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapters:
00:00 Progesterone and Estrogen Tease
00:28 Meet the Host and Guest
02:09 Dr Chevell Origin Story
05:52 Why Women Get Dismissed
12:28 Normal Tests and Next Steps
16:47 Medical Trauma After Diagnosis
21:37 Advocacy Without Alienating
38:23 Social Media Health Smarts
42:12 Curating Health Info
43:08 Vetting Experts and Noise
44:53 Hormones Meet Mast Cells
47:22 Histamine Hacks for PMDD
50:57 HRT and Birth Control
53:58 Finding the Right Provider
01:03:22 Hope and Book Talk
01:08:24 Hypermobility Hacks and Wrap

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If an infection triggered your mast cell activation syndrome (MCAS), Sjögren’s, or dysautonomia, can treating that infection reverse it?

In this episode of the Bendy Bodies Podcast, Dr. Linda Bluestein and Dr. Ina Stephens answer a listener questions.

Dr. Stephens explains molecular mimicry and how a virus like Epstein-Barr can set off autoimmune conditions such as Sjögren’s in genetically predisposed people, and why killing the infection does not undo that autoimmune cascade. The conversation then moves into one of the most charged topics in the chronic illness world: vaccines. She shares an evidence-based view on the shingles vaccine, flu shots, and COVID boosters, who should be cautious, and why reaching for ibuprofen after a shot can blunt your immune response (reach for acetaminophen instead). Finally, Dr. Bluestein and Dr. Stephens dig into GLP-1 medications like tirzepatide and semaglutide, and the surprising, still-anecdotal reports that microdoses as low as a fraction of the weight-loss dose may calm refractory MCAS, inflammation, and pain. This episode offers practical, hopeful information for anyone told there’s “nothing you can do.”

Takeaways:

• If an infection set off your Sjögren’s or MCAS, can treating it make the condition disappear? The answer reframes what “healing the trigger” really means.
• How can a common virus like Epstein-Barr switch on an autoimmune disease years later? Molecular mimicry may be the hidden link.
• Should you get the shingles vaccine if you have EDS? A vaccinologist explains why postherpetic neuralgia pain is worth preventing.
• Why might that ibuprofen after your flu shot actually work against you? One painkiller can blunt the immune response you’re trying to build.
• Had a bad reaction to a COVID vaccine that flared your symptoms for good? Here’s who Dr. Stephens says should skip the booster, and who shouldn’t.

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.orgUVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinicUVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Want more Dr. Linda Bluestein, MD?Website: https://www.hypermobilitymd.com/YouTube: https://www.youtube.com/@bendybodiespodcastInstagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymdDr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

Cozy Earth almost never does 30% off, and they're doing it right now through the 11th. Go to ⁠cozyearth.com⁠, use code |Bendy|, and get 30% off home and sleepwear. Cozyearth.com, code |Bendy|. Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today!

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What if the reason your body keeps "betraying" you isn't one more undiagnosed disease, but a nervous system stuck in danger mode? Dr. Cathleen King was bedridden for over a decade before she discovered that the brain and vagus nerve might be the missing link behind POTS, mast cell flares, and chronic pain, and that you can start retraining them yourself.

In this episode of the Bendy Bodies Podcast, Dr. Linda Bluestein, the Hypermobility MD, talks with Dr. Cathleen King, physical therapist and founder of Primal Trust, about brain retraining, vagus nerve toning, and nervous system regulation for hypermobile Ehlers-Danlos syndrome (hEDS), POTS, mast cell activation syndrome (MCAS), long COVID, and ME/CFS.

Dr. King spent over a decade chronically ill and homebound before building the approach she now teaches. She explains the science of psychoneuroimmunology, the cell danger response, and polyvagal theory in plain language, and makes a careful distinction between taking responsibility for your healing and blaming yourself for being sick. She shares why she has patients tone the vagus nerve before brain retraining, why biohacking devices can backfire for highly sensitive people, how upper cervical instability can keep the body locked in alarm, and how a functional recovery is possible even while structural issues remain. Dr. Bluestein and Dr. King also discuss how to tell when a racing heart or a real MCAS trigger needs medical attention versus nervous system work, what to look for (and the red flags to avoid) when choosing a brain retraining program, and simple practices like near-far gaze and coherence breathing you can try today.

This episode is for educational purposes only and is not a substitute for personalized medical advice.

Takeaways:

• Is "self-healing" real science or wishful thinking? The field of psychoneuroimmunology may explain how your brain state changes your immune system.

• Can you recover your function while still having mold, Lyme, or joint instability? Dr. King says she did, and explains how.

• Could upper cervical instability be keeping your whole body stuck in alarm mode? What EDS patients should know before trying eye exercises.

Want more Dr. Cathleen King?

Website: https://www.primaltrust.org/
Facebook: https://www.facebook.com/primaltrust.drcat/
YouTube: https://www.youtube.com/channel/UCCnLWMcEqPI6I9jizRvhS8w
Instagram: https://www.instagram.com/primaltrust_official/
TikTok: https://www.tiktok.com/@primaltrust_official

Want more Dr. Linda Bluestein, MD?Website: https://www.hypermobilitymd.com/YouTube: https://www.youtube.com/@bendybodiespodcastInstagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymdDr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.orgUVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinicUVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

Cozy Earth almost never does 30% off, and they're doing it right now through the 11th. Go to ⁠cozyearth.com⁠, use code |Bendy|, and get 30% off home and sleepwear. Cozyearth.com, code |Bendy|.

Go to AirDoctorPro.com and use promo code BENDY to get UP TO $300 off today!

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapter: 00:00 Safe to Feel Safe
00:32 Meet Dr Kathleen King
02:07 From Bedridden to Breakthrough
05:14 What Self Healing Means
06:39 Not All in Your Head
10:27 Sensitized Brain and Noise
21:25 Brain Retraining Explained
34:04 Vagus Nerve Toning Basics
41:38 Presencing Through Discomfort
43:22 Near Far Gaze Exercise
45:14 Screens Neck Tension Anxiety
47:37 Trauma Levels In Primal Trust
52:12 Hypermobility Personality Patterns
57:34 POTS MCAS Symptoms Vs Anxiety
01:00:42 Choosing Brain Retraining Wisely
01:08:35 Sovereignty Hack And Wrap Up

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Are hypermobile EDS, MCAS, POTS, and dysautonomia actually becoming more common—or are we finally getting better at recognizing what has been there all along?

In this episode, host Dr. Linda Bluestein, the Hypermobility MD, is joined again by Dr. Ina Stephens to answer listener questions and take a deeper look at autoimmunity, inflammation, and acquired causes of autonomic nervous system dysfunction.

Why are so many people suddenly being diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS), hypermobility spectrum disorder (HSD), mast cell activation syndrome (MCAS), and POTS? Dr. Stephens explains why greater awareness and recognition may account for at least part of the apparent increase—including patients being diagnosed for the first time in their 70s and 80s and family histories suggesting these conditions went unrecognized for generations.

But genetics may be only part of the story. What causes someone with an underlying predisposition to suddenly become symptomatic? Drs. Bluestein and Stephens explore how viral infections and other triggers may contribute to inflammatory and autoimmune cascades, including the potential role of molecular mimicry and environmental exposures.

They also tackle a topic that can be easily misunderstood: brain retraining and nervous system regulation. What do neuroplasticity, the amygdala, and the brain’s threat response have to do with very real physical symptoms? Programs such as Primal Trust, DNRS, and the Gupta Program are discussed as possible tools for reducing an overactive threat response—not because symptoms are imaginary or “all in your head,” but because the brain and body are deeply interconnected.

Finally, they broaden the differential diagnosis beyond autoimmunity. Nutritional deficiencies, B-vitamin imbalances, toxic exposures, medications, and other acquired factors may also contribute to autonomic dysfunction, highlighting why evaluation should be guided by each person’s history and individual risk factors.

Takeaways:

• Are hEDS, HSD, MCAS, POTS, and dysautonomia really becoming more common—or are we finally recognizing them? Diagnoses in older adults and patterns across generations raise fascinating questions about how much of the apparent increase reflects awareness rather than changing incidence.

• Could autoimmunity be hiding behind some cases of POTS and autonomic dysfunction? Secondary autoimmune disease may be an important consideration in some people with hEDS or HSD, particularly when the clinical picture suggests more than primary dysautonomia alone.
• Can you retrain the nervous system without implying that symptoms are “all in your head”? Neuroplasticity, amygdala retraining, and nervous system regulation programs such as Primal Trust, DNRS, and the Gupta Program offer a very different way of thinking about the brain’s role in amplifying—or potentially calming—physical symptoms.

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.orgUVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinicUVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Want more Dr. Linda Bluestein, MD?Website: https://www.hypermobilitymd.com/YouTube: https://www.youtube.com/@bendybodiespodcastInstagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymdDr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

Cozy Earth almost never does 30% off, and they're doing it right now through the 11th. Go to http://cozyearth.com/, use code |Bendy|, and get 30% off home and sleepwear. Cozyearth.com, code |Bendy|.

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Learn more about your ad choices. Visit https://megaphone.fm/adchoices

What if a child has joint instability but doesn’t actually look hypermobile? And when are “growing pains” a sign that something more is going on?

In this episode of Bendy Bodies, Dr. Linda Bluestein sits down with Sarah Cohen Solomon, MD, a board-certified pediatrician at UVA Health specializing in Ehlers-Danlos syndromes (EDS), joint hypermobility, and related conditions, to unpack how connective tissue disorders can present differently in children and why they can be so easy to miss.

Dr. Solomon, who was diagnosed with hEDS herself at age 20, explains why evaluating joint hypermobility in children requires more than a quick Beighton score. They discuss how muscle tension can mask joint instability, why coaches, teachers, and parents may notice problems before clinicians do, and when recurring “growing pains” deserve a closer look.

The conversation also explores the significant overlap between hypermobility and neurodivergence, including ADHD and autism, as well as dizziness, orthostatic intolerance, and POTS in children and adolescents.

Just as importantly, Drs. Bluestein and Solomon tackle a difficult question: How do we validate a child’s very real symptoms without increasing fears about their body being fragile?

You’ll hear practical strategies for creating flare plans, using a traffic-light system to guide activity, choosing meaningful school accommodations for dynamic disabilities, and helping children remain active without repeatedly pushing them into symptom flares.

Dr. Solomon also explains when pediatric patients should be referred to specialists, how a 10-minute standing test can help evaluate orthostatic symptoms, and why gentle, consistent physical therapy may be more successful than an aggressive “push through it” approach.

The episode closes with a rapid-fire round covering pediatric red flags, favorite treatment strategies, and a surprisingly simple hypermobility hack for long flights and car rides.

Takeaways:

• Can a child have unstable joints without looking flexible? Muscle tension and guarding may hide more than you think.

• When are “growing pains” not just growing pains? Learn which patterns deserve a closer look.

• Is the Beighton score enough to identify hypermobility in children? Dr. Solomon explains what this commonly used tool can miss.

• Why do hypermobility, ADHD, and autism so often show up together? The overlap may be an important piece of the clinical puzzle.

• Could a simple 10-minute standing test provide clues about dizziness, POTS, or orthostatic intolerance? Here’s what clinicians and families should know.

• Can physical therapy actually make a hypermobile child feel worse? Learn why pushing too hard, too fast may backfire and what a more sustainable approach can look like.

• What can schools do when a child’s abilities change from day to day? The right accommodations can support participation without unnecessarily limiting activity.

• And what’s Dr. Solomon’s simple hypermobility hack for long flights and car rides? Stay to the end for her surprisingly practical tip.

Want more of Dr. Sarah Cohen Solomon?

Website: https://thebendypediatrician.com/

Instagram: @thebendypediatrician

Want more Dr. Linda Bluestein, MD?Website: https://www.hypermobilitymd.com/YouTube: https://www.youtube.com/@bendybodiespodcastInstagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymdDr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.orgUVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinicUVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Learn more about your ad choices. Visit https://megaphone.fm/adchoices

What if the virus is gone, but your body still has not recovered?

Dr. Linda Bluestein is joined again by Dr. Ina Stephens, associate director of the UVA Health EDS and Hypermobility Disorders Center, to unpack what can happen after Epstein-Barr virus (EBV), especially when post-exertional malaise (PEM), autonomic symptoms, and repeated crashes continue long after the initial infection.

Starting with a listener question from someone recovering from EBV who keeps crashing after activity, Dr. Stephens explains how EBV testing is interpreted, what IgM, IgG, early antigen, and EBNA may tell you, and why a “reactivation” result does not always mean the virus itself is the main problem.

They also get into what may help recovery. The discussion includes antiviral treatment, pacing, sleep, anti-inflammatory nutrition, mitochondrial and muscle support, and supplements such as creatine monohydrate, HMB, taurine, glutathione, and urolithin A. Dr. Stephens also explains why deep diaphragmatic breathing may help calm the autonomic nervous system and what to do when you are already in a PEM crash.

Takeaways:

•

EBV testing can be confusing, and the pattern of antibodies matters more than any single result.

•

A positive marker for EBV reactivation does not necessarily mean active viral replication is driving symptoms.

•

Antivirals are most likely to help when active viral replication is actually occurring.

•

Pushing through PEM can make recovery harder, so pacing matters.

•

Sleep, nutrition, breathing practices, and selected supplements may help support recovery.

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.orgUVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinicUVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Want more Dr. Linda Bluestein, MD?Website: https://www.hypermobilitymd.com/YouTube: https://www.youtube.com/@bendybodiespodcastInstagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymdDr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY.

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapter: 00:00 EBV Everywhere
00:29 Welcome and Episode Roadmap
02:10 Corey’s PEM Question
02:52 What EBV Does in the Body
06:03 Healing PEM From the Ground Up
10:37 Vagus Nerve Breathing Tools
16:31 Mitochondrial Supplements and Dosing
29:36 EBV Labs Reactivation vs New Infection
40:58 IgM and Monospot Memory
42:07 Cold Sores and Antivirals
44:47 Why Reactivation Varies
49:21 Holistic Medicine Not Silos
51:11 Vagus Nerve Breathing Basics
55:00 Stress Hormones and Inflammation
01:00:54 Urolithin A and Mitophagy
01:08:49 PEM Recovery and Wrap Up

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What if your hand pain, numbness, weakness, or grip problems aren’t actually coming from your hand or wrist? Orthopedic hand surgeon William Ericson, MD, joins Dr. Linda Bluestein to explain why people with Ehlers-Danlos syndrome (EDS) and hypermobility may experience overlooked median nerve entrapment near the elbow, carpal tunnel-like symptoms, thumb arthritis, and thoracic outlet syndrome—even when standard imaging or nerve testing doesn’t reveal the answer.

Dr. Ericson, co-author of the 2017 American Journal of Medical Genetics article on orthopedic management of the Ehlers-Danlos syndromes, shares what he has learned from more than three decades of treating patients with complex upper-extremity symptoms.

Why can someone have significant hand pain, weakness, numbness, tingling, or loss of grip strength even when imaging or standard nerve testing looks normal? Dr. Ericson describes a pattern of proximal median nerve entrapment near the elbow that he believes is extremely common in people with EDS and may frequently be mistaken for carpal tunnel syndrome, tendonitis, or unexplained pain.

He explains how median nerve dysfunction can change the way the hand pinches and grips, potentially placing excessive stress on the thumb and contributing to thumb arthritis over time. He also discusses whether identifying and treating the underlying nerve problem could help reduce that risk.

The conversation expands beyond the hand and wrist to the relationship between hypermobility, shoulder instability, scapular protraction, and thoracic outlet syndrome. Dr. Ericson explains why improving shoulder and scapular mechanics may sometimes be more important than operating directly on the thoracic outlet.

You’ll also hear an important discussion about cortisone injections in EDS and hypermobility, including why injections may be appropriate for true tendon inflammation but potentially problematic when the underlying issue is joint instability.

Just as importantly, Dr. Ericson explains why he evaluates the whole person before recommending surgery—including posture, shoulder mechanics, thoracic outlet involvement, stress, and mental health—and why persistent symptoms after surgery may sometimes reflect an unrecognized problem farther upstream.

The episode closes with advice for anyone living with symptoms that have been difficult to explain: a good clinician does not have to know everything. Sometimes the most important words a healthcare professional can say are, “I don’t know—but I believe you, and I’ll help you figure out what comes next.”

Want more of Dr. William Ericson?

Website: https://www.williamericsonmd.com/

Ericson Hand and Nerve Center: https://ericsonhand.com/

Want more Dr. Linda Bluestein, MD?Website: https://www.hypermobilitymd.com/YouTube: https://www.youtube.com/@bendybodiespodcastInstagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymdDr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.orgUVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinicUVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY.

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapter: 00:00 Median Nerve Shocker
00:29 Meet Dr Erickson
01:47 Why He Focuses on EDS
06:14 Listening Changed Everything
13:52 Common Upper Extremity Complaints
19:58 Median Nerve Elbow Explained
25:06 Misdiagnosis and Thumb Arthritis
28:16 Surgery Decision Protocol
31:30 Ergonomics and Tool Hacks
33:09 When Surgery Makes Sense
33:57 Thoracic Outlet Surgery Risks
35:29 Scapular Protraction Fix
38:26 Red Flags Before Operating
45:24 Activities That Trigger Symptoms
47:30 Best Exercises for EDS
50:05 Clinician Pitfalls and Wrap-Up

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Patients are already asking AI the questions they cannot always ask their doctors. That creates enormous opportunity, but also real risk. AI can help people organize complex medical information, prepare for appointments, and better understand their health. It can also sound completely certain when the evidence is weak or the answer is wrong. In this live episode of Bendy Bodies, host Dr. Linda Bluestein speaks with Michael Turken, MD, an internist at UCSF and founder of My Doctor Friend, an AI health companion designed to support patients navigating medical complexity. Dr. Turken explores the growing gap between what patients need from healthcare and what traditional systems can realistically provide, especially between appointments. He explains where AI may help fill that gap, where it can go wrong, and why these tools should support rather than replace the patient-physician relationship. The conversation includes practical strategies for connecting medical records to AI platforms, checking what an AI model actually understands about your health history, keeping that information accurate and current, and recognizing situations where AI may be less reliable, particularly when the science itself is still evolving. Takeaways:

• AI chatbots are not healthcare providers, and many are not subject to HIPAA protections in the same way healthcare organizations and covered entities are.
• AI can sound highly confident even when its answer is incomplete, overly reassuring, or wrong. The conversation includes discussion of AI sycophancy, in which a model may reinforce a user’s assumptions or provide reassuring responses rather than appropriately challenging them.
• If you connect your medical records to an AI platform, periodically ask it to summarize what it believes about your diagnoses, medications, major medical events, and current health history. This can help uncover outdated, missing, or incorrect information.
• AI may be particularly useful in addressing the gap between what patients want from healthcare, such as the ability to ask questions at any hour, organize complex information, and prepare for appointments, and what traditional healthcare systems can currently provide.
• For medically complex patients, the quality of an AI answer depends heavily on the quality, completeness, and accuracy of the information the model is using.

To get 2 months of Premium access to My Doctor Friend, use code "BENDY" Want to learn more about My Doctor Friend? Website: https://about.mydoctorfriend.ai/ Instagram: @mydoctorfriend.ai Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapter:

00:00 AI as Malpractice
00:28 Welcome and Guest Intro
01:20 Boutique Sponsor Break
01:54 Why Build My Doctor Friend
05:52 Choosing AI Platforms
07:15 Record Linking Pitfalls
09:21 Always Ask What It Knows
12:35 Three Models for Safety
15:50 Privacy Reality Check
19:29 Reassurance Trap Lawsuit
21:47 Making One Model a Jerk
23:27 Urgent Care MRI Story
27:18 Fixing Sycophancy Prompts
32:12 Doctors React to AI
35:26 Avoiding AI Misinformation
38:51 Privacy and Medical Records
41:46 Finding EDS Savvy Doctors
46:24 Talking AI With Your Doctor
48:46 My Doctor Friend Demo
55:31 AI in Medicine Next 5 Years
58:41 Carbon Footprint and Wrap Up

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What happens when doctors misunderstand Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)? Sometimes the consequences go far beyond frustration or delayed treatment. In this episode of Bendy Bodies with the Hypermobility MD, Dr. Linda Bluestein is joined by Dr. Ina Stephens, Associate Director of the UVA Health EDS and Hypermobility Disorder Center, to answer listener questions about MCAS, gut health, circadian rhythm, migraine, pediatric hypermobility, and more. They also confront a disturbing reality for some families navigating poorly understood conditions: medical gaslighting, misdiagnosis, and inappropriate Munchausen-by-proxy referrals. Can you support a healthy gut microbiome with MCAS if fermented foods trigger symptoms? Drs. Bluestein and Stephens discuss the role of dietary fiber, polyphenol-rich foods, exercise, and thoughtful antibiotic use, including why the narrowest effective antibiotic may be preferable when treatment is necessary. They also explain why resetting a disrupted circadian rhythm involves more than simply going to bed earlier, and how morning light exposure can help shift the body’s internal clock. Then the conversation turns to migraine management in hypermobile patients. Dr. Stephens shares her approach to supplements and medications, including magnesium glycinate, CoQ10, and CGRP-targeting medications such as ubrogepant (Ubrelvy,) while explaining why Botox (onabotulinumtoxin A) is not usually a first-line migraine treatment and may be problematic for people with significant craniocervical instability. The episode also tackles a question with major implications for the next generation: Should children be evaluated for hypermobile EDS earlier (hEDS)? Dr. Stephens explains how delayed recognition can contribute to years of orthopedic problems, psychological distress, inappropriate diagnoses, and missed opportunities for prevention and support. Finally, the episode closes with a Hypermobility Hack on low dose naltrexone (LDN): how it may work, why benefits can take time to appear, and why patience matters when evaluating whether it is helping. Takeaways:

• Could the wrong antibiotic choice create problems long after the infection is gone?
• Why might morning sunlight matter more than forcing yourself to go to bed earlier?
• When could Botox actually make headaches and neck symptoms worse in someone with hypermobility?
• How can missed or delayed recognition of hEDS in childhood affect orthopedic and mental health outcomes years later?
• What happens when physicians misunderstand EDS so profoundly that a family is suspected of fabricating illness?
• Why can low dose naltrexone seem like it is “not working” before it has had enough time to take effect?

Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY. FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links. Chapters: 00:00 EDS Starts Early
00:34 Meet Dr Ina Stephens
02:12 Fermented Foods MCAS
02:39 Microbiome Support Basics
10:47 Antibiotics Probiotics
15:49 Medical Distrust CPS Risk
29:31 Migraine Treatments Botox
41:16 Feverfew Dosage Basics
41:30 Avoiding Rebound Headaches
43:12 CGRP Rescue Meds Explained
44:51 Why Diagnose EDS Early
49:05 Early Intervention and Prevention
56:42 Parenting Tips and Clinic Access
01:06:54 LDN Patience and Closing Resources

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Why can you feel almost functional one day and completely wrecked the next with hypermobile EDS, HSD, POTS, or MCAS? And how do you know whether you need more treatment, more rest, more movement, or an entirely different approach? In this special episode of Bendy Bodies with the Hypermobility MD, producer Aron Korney turns the tables on Dr. Linda Bluestein, asking questions submitted by the hypermobility community about some of the most frustrating and misunderstood parts of living with hypermobile Ehlers-Danlos syndrome (hEDS), hypermobility spectrum disorder (HSD), mast cell activation syndrome (MCAS), POTS/dysautonomia, joint instability, chronic pain, and related conditions. Dr. Bluestein breaks down why symptoms can fluctuate so dramatically from day to day and explains the physiology that may be driving those changes. Sleep quality, hormones, hydration, immune and mast cell activation, physical activity, cumulative stress, and other factors can all influence how someone feels from one day to the next. The conversation also tackles something that is rarely discussed enough: the shame, guilt, and self-doubt that can come with unpredictable chronic illness. Dr. Bluestein shares practical ways family members, partners, and friends can offer support without minimizing symptoms, giving advice that wasn’t requested, or assuming they know what the person needs. They also explore two professionals who are often missing from a hypermobility care team: pelvic floor physical therapists and mental health professionals who truly understand chronic illness. Drawing from The Book of Questions: Living with Chronic Illness by Brianna Greenspan and Dr. Gregory Stock, Dr. Bluestein discusses a powerful self-advocacy question: “Despite how I’m feeling in this exact moment, what can I do to best support myself starting now?” Sometimes the most useful intervention isn’t a complicated new treatment. It may be drinking water, eating something, changing position, putting on compression, asking for help, modifying an activity, or simply doing one small thing that moves you forward. And then things get rapid-fire. Dr. Bluestein reveals some of her favorite and most underrated treatments for hypermobility, the misconceptions about joint instability she encounters most often, and what she considers one of the most dangerous myths in EDS and HSD care: that surgery is always the answer for an unstable joint. They discuss why joint stability is more complicated than ligaments alone, how systemic issues such as mast cell activation may influence symptoms and stability, and why optimizing the entire person before pursuing surgery can matter. The episode closes with a simple strategy for anyone who feels overwhelmed by a long list of health problems: don’t try to fix everything at once. Start small, build momentum, and keep moving in the right direction. Whether you’re living with hEDS, HSD, POTS, MCAS, chronic pain, dysautonomia, or another complex connective tissue disorder, this episode offers practical strategies for understanding symptom variability, building a better care team, advocating for yourself, and making progress without needing a perfect plan. Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY. FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapters:

00:00 Fatigue Battery Analogy

01:15 Episode Goals and Community

04:08 Family and Friends Variability

06:26 Why Symptoms Fluctuate

12:26 Spoon Theory and Energy

15:14 Supportive Accommodations

30:38 Care Team Unsung Heroes

33:24 Micro Massive Self Support

36:38 AI Tools And Privacy

38:55 Rapid Fire Myths And Treatments

47:36 One Next Step Hack

53:20 Goodbye And Final Resources

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What if some of the most disabling symptoms in EDS, HSD, POTS, MCAS, ME/CFS, and long COVID are being driven by something we still struggle to see on standard testing? In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by guest co-host Dr. Ina Stephens, Associate Director of the UVA Health EDS and Hypermobility Disorder Center, along with Brain Inflammation Collaborative co-founder Christy Jagdfeld and neuroscientist Dr. Megan Fitzgerald. Together, they explore the rapidly evolving science of brain inflammation, including what it actually means, how it differs from conditions like encephalitis or brain edema, and why it may matter in complex multisystem illness. The conversation dives into microglial activation, mast cell involvement in the central nervous system, and the challenge of detecting subtle neuroinflammation in living patients. The guests also discuss emerging research tools, including ultra-high-field MRI, PET ligands, and blood-based extracellular vesicles, that may eventually give clinicians a clearer window into what is happening inside the brain. The group also takes a closer look at the Brain Inflammation Collaborative's Unhide platform, which is collecting real-world, patient-reported data across more than 30 overlapping chronic conditions, including EDS, POTS, MCAS, ME/CFS, and long COVID. Early findings raise important questions about quality of life, symptom burden, the limitations of the Beighton score, and why pediatric research may be especially important. The episode closes with practical implications, including why pacing matters when exercise can worsen symptoms rather than improve them, and what patients and clinicians should watch as this field moves forward.

Note: Technical difficulties knocked Dr. Linda Bluestein offline halfway through the taping; thankfully, Dr. Ina Stephens carried the rest of conversation. Takeaways

• “Brain inflammation” can involve subtle processes such as microglial activation and mast cell signaling that may not appear on routine MRI or CT scans.
• Emerging tools such as ultra-high-field MRI, PET imaging, and blood-based extracellular vesicles may eventually help researchers detect and track neuroinflammation in living patients.
• The Unhide platform has collected real-world data from thousands of participants with overlapping chronic conditions, offering a new way to study symptom burden and quality of life outside traditional clinical trials.
• The Beighton score may not reflect functional severity or symptom burden, highlighting the need for better ways to assess hypermobility over time.

Want more of the Brain Inflammation Collaborative? https://www.unhidenow.org/ https://www.braininflammation.org/ Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today! FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapters: 00:00 Beighton Score Debate
00:28 Meet the Guests
02:54 Why BIC Was Founded
07:22 Defining Brain Inflammation
09:44 Biomarkers and Imaging Advances
18:12 Unhide Platform and Real World Data
25:55 Comorbidities and Survey Cadence
31:40 Survey Fatigue Solutions
32:49 Tools Beyond Beighton
34:16 Research Priorities Wish List
35:41 Biomarkers EVs Immune Profiling
38:37 Pediatric Focus Early Signs
46:34 Building Pediatric Platform
53:07 Hacks Resources And Wrap Up

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What if being “naturally flexible” is actually the thing putting you at risk for injury? Dr. Linda Bluestein welcomes back Dr. Emily Scherb, known as The Circus Doc, for a fascinating conversation about what circus performers can teach all hypermobile people about flexibility, strength, joint control, and injury prevention. A physical therapist, researcher, and former circus performer, Dr. Scherb explains why being able to get into an extreme position is not the same as being able to control it—and why impressive range of motion can sometimes mask weakness, instability, or poor load tolerance. The conversation explores how hypermobile bodies function differently at end range, why building strength in the mid-range can be so important, and how to tell the difference between normal training soreness, overtraining, injury, and signs that may point toward an underlying connective tissue disorder. Dr. Scherb and Dr. Bluestein also dig into the psychology of pushing through pain, the way flexibility can become intertwined with identity, the spinal changes documented in contortionists, and why performers may hide injuries when they fear that speaking up could threaten their careers. And while circus provides an extreme example, the lessons apply far beyond the circus world—to dancers, athletes, yogis, gymnasts, and anyone with a body that moves farther than average. Takeaways: More range is not always better. Hypermobility describes how far a joint can move; what matters just as much is how well you can control that range. Getting into a position is not the same as owning it. Extreme flexibility without adequate strength and control can increase stress on joints and surrounding tissues. Hypermobile people often benefit from building strength and motor control in mid-range before progressively challenging end range. Persistent pain, recurrent injuries, instability, or symptoms that seem disproportionate to training may be clues that something more than routine soreness is going on. Contortion offers a striking example of how repeated end-range loading can produce measurable adaptations in the spine. Pain should not have to become severe before someone feels “allowed” to seek care. Creating a culture where performers can address problems early may help protect both health and longevity. The goal for a hypermobile body is not necessarily less flexibility. It is more strength, control, and capacity within the range you already have. Want more of Dr. Emily Scherb? Instagram: https://www.instagram.com/thecircusdoc Website: https://www.thecircusdoc.com Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network Head to http://www.cozyearth.com and use my code BENDY for an exclusive 20% off. Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today! FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Chapters: 00:00 Painful Past With Stretching 00:40 Meet The Circus Doc 03:03 How Emily Found Circus Medicine 04:37 What Circus Really Is 06:25 Circus Injuries And End Range 08:55 Hypermobility Flexibility Resilience 33:00 Soreness Vs Overtraining Red Flags 37:52 Hypermobility Soreness Clues 40:13 Yellow Flags vs Red Flags 42:46 Circus Risk and Resilience 47:27 Ignoring Pain Signals 52:08 Building Safer Culture 59:46 Contortion Safety and Strength 01:05:46 Longevity Hacks and Wrap Up

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Tongue tie and POTS? EDS without obvious hypermobility? Perimenopause making symptoms worse? And tongue numbness after a nerve block? In this listener Q&A, Dr. Linda Bluestein, the Hypermobility MD, and recurring co-host Dr. Dacre Knight, medical director of the UVA Health EDS and Hypermobility Disorders Center, tackle some of the complicated questions patients are asking—and where the evidence is still evolving.

Can tongue tie contribute to dysautonomia? Can men have a connective tissue disorder even without obvious joint hypermobility? How should people with hEDS, POTS, and MCAS think about pregnancy? And could being born prematurely influence autonomic function later in life?

Dr. Bluestein and Dr. Knight also explore emerging research examining trauma histories in people with EDS and HSD, including how repeated medical dismissal and gaslighting may contribute to trauma over time.

The conversation turns to perimenopause and menopause, including why perimenopause can be particularly challenging and the sometimes-competing considerations of estrogen and progesterone therapy for people managing both menopausal symptoms and connective tissue laxity.

Finally, they break down Local Anesthetic Systemic Toxicity (LAST): what it is, symptoms to recognize, potential risk factors, and how it is managed—prompted by a listener’s experience with recurrent tongue numbness following nerve blocks.

In this episode, you’ll learn:

•

What we know—and don’t know—about tongue tie and dysautonomia

•

Why connective tissue disorders may look different in men

•

Important considerations when planning pregnancy with hEDS, POTS, and MCAS

•

Whether prematurity may influence autonomic function later in life

•

What emerging research suggests about trauma, EDS/HSD, and medical gaslighting

•

Why perimenopause may be particularly difficult for some hypermobile patients

•

How estrogen and progesterone may affect symptoms and connective tissue laxity

•

How to recognize Local Anesthetic Systemic Toxicity (LAST)

•

Why unusual neurologic symptoms after local anesthetic exposure deserve attention

Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today! Want more Dr. Linda Bluestein, MD?

Website: ⁠https://www.hypermobilitymd.com/⁠YouTube: ⁠https://www.youtube.com/@bendybodiespodcast

⁠Instagram: ⁠⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/

⁠⁠⁠⁠⁠Facebook: ⁠⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠⁠X: ⁠⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠⁠

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Want to learn more about the UVA EDS Center?

For Appointments and Questions: ⁠RUVAEDSCenter@uvahealth.org

⁠UVA EDS: ⁠https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic⁠UVA EDS

FAQ: ⁠https://www.uvahealth.com/support/eds/faq⁠

UVA Pediatric Integrative Medicine: ⁠https://childrens.uvahealth.com/specialties/integrative-health⁠

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

YOUR bendy body is our highest priority!⁠⁠⁠⁠ Learn more about Human Content at ⁠⁠⁠⁠http://www\.human-content\.com⁠⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠⁠sales@human-content.com⁠⁠⁠⁠

Part of the Human Content Podcast Network

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Join YOUR Bendy Bodies community at ⁠⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠⁠.

Chapters: 00:00 Medical Trauma Opens
00:36 Show Intro and Fan Qs
02:38 Adult Tongue Tie Talk
12:09 hEDS in Men Question
16:58 10 Percent Rule Toolkit
21:36 Pregnancy Planning Advice
28:02 Prematurity and Trauma Links
33:46 Trauma Begets Trauma
34:52 Stellate Blocks And Vagal Stimulation
36:20 Postmenopausal Bleeding And MCAS
38:36 Endometriosis And Perimenopause
42:19 Hormones Versus Hypermobility
45:49 Clinician Advocacy And Learning
49:57 LAST And Tongue Numbness

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Could lumping every type of Ehlers-Danlos syndrome under one umbrella actually be doing more harm than good?

In this thought-provoking episode, host Dr. Linda Bluestein, the Hypermobility MD, is joined by Abbey Phillipson, who was born with COL5A1 classical Ehlers-Danlos syndrome, survived the first recorded non-traumatic pediatric spondyloptosis, and now serves as Head Strength Coach for Paralympic and Adaptive Sports at the University of Michigan and founder of the Collagen Advocacy Network.

Inspired by Abbey's powerful presentation at the UVA Research Symposium, this conversation challenges long-held assumptions about how we define, discuss, and advocate for Ehlers-Danlos syndrome. Although hypermobile EDS has dramatically increased public awareness, Abbey argues that people living with rare and ultra-rare EDS types, representing just 1 to 3 percent of the community, are too often overlooked in research, funding, clinical care, and even public conversations.

Together, Dr. Bluestein and Abbey explore whether the different EDS types should continue to share a single name, why distinguishing hypermobile EDS from the genetically defined types could ultimately benefit everyone, and how naming disorders by their underlying gene and predominant manifestation might improve diagnosis, research, and patient care.

Abbey also shares deeply personal stories that illustrate what's at stake, including a friend who spent 35 years carrying the wrong diagnosis before genetic testing revealed kyphoscoliotic EDS. Their conversation highlights why genetic counseling matters, the limitations of direct-to-consumer testing, and how assumptions in medicine can unintentionally delay appropriate care.

The episode closes on a message of hope and empowerment. After her neurosurgeon prescribed strength training, Abbey transformed from experiencing monthly full-joint dislocations to having none. Today, she helps athletes and people of all abilities discover that movement can be adapted, strength can be built, and disability does not define potential. She also shares why advocacy is most effective when it channels frustration into meaningful, solution-focused action, plus one of her favorite protein-packed hypermobility hacks.

Takeaways:

• People with rare and ultra-rare EDS types make up only about 1 to 3 percent of the community and are frequently left out of decisions about research, funding, and care.

• Clearly distinguishing hypermobile EDS from the genetically defined types benefits everyone; naming a condition by its gene and predominant manifestation could improve medical clarity and care.

• The "invisible illness" framing can cause genuinely visible rare types to be overlooked, and comfort with a clinical diagnosis can lead to decades-long misdiagnoses that genetic testing would catch.

• Genetic testing and counseling are essential, especially before starting a family; direct-to-consumer testing carries real limitations and should be interpreted cautiously.

• Strength training can be transformative: after her neurosurgeon prescribed it, Abbey went from frequent full dislocations to none, and movement can be tailored to activities people love rather than being purely prescriptive.

Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today!

Want more Abbey Phillipson?

Instagram: @abbeyphillipson @definedbycollagen

Website: http://collagenadvocacynetwork.org/

Want more Dr. Linda Bluestein, MD?
Website: https://www.hypermobilitymd.com/
YouTube: https://www.youtube.com/@bendybodiespodcast
Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠
Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠
X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠
LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠
Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/
Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd
Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org
UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic
UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

Learn more about your ad choices. Visit https://megaphone.fm/adchoices

Are surgical risks in EDS exaggerated, underestimated, or simply misunderstood? And how can patients tell the difference between a promising treatment and an expensive procedure being marketed ahead of the evidence?

In this listener Q&A episode, host Dr. Linda Bluestein, the Hypermobility MD, is joined by recurring co-host Dr. Dacre Knight, Medical Director of the UVA Health EDS and Hypermobility Disorders Center, to tackle some of the most difficult questions submitted by the Bendy Bodies community.

They begin with a candid discussion about surgery in EDS: why most patients do well, which complications are genuinely more likely, and why a surgeon’s technical experience and procedural volume may matter just as much as their understanding of EDS (Ehlers-Danlos Syndromes) and HSD (Hypermobility Spectrum Disorders). They also explain how poorly controlled mast cell activation can derail recovery and why preparation before surgery may be more important than simply being reassured that everything will be fine.

The conversation then turns to the striking mental health burden within the EDS and hypermobility population, including self-harm and cutting behaviors. Dr. Bluestein and Dr. Knight discuss why anxiety, depression, insomnia, and pain may sometimes reflect shared underlying biological drivers, and how treatments such as low dose naltrexone (LDN) may improve multiple symptoms at once when used thoughtfully.

Listener questions lead them into the increasingly controversial world of cervical instability treatment, including PRP, the PICL procedure, and cervical fusion. What evidence actually exists? Who may benefit? What are the risks? And could treating mast cell activation and other contributors first reduce symptoms enough to avoid an invasive procedure altogether?

They also take a critical look at IV infusion therapy, explaining when infusions may be medically appropriate, when they may cause more harm than benefit, and why clinics offering the same expensive infusion to nearly every patient before reviewing labs should immediately raise concern.

The episode closes with an honest assessment of what is currently known about the cause of hypermobile EDS (hEDS), whether epigenetics may play a role, and why patients should pause whenever a clinician recommends a highly prescriptive treatment before completing a proper diagnostic evaluation.

Takeaways:

•

EDS surgery risks are real, but fear-based messaging can be harmful too. Most patients do well, especially when they choose an experienced, high-volume surgeon and address factors such as mast cell activation syndrome (MCAS) before the procedure.

•

A kind surgeon is not necessarily a skilled surgeon. Bedside manner matters, but technical expertise, procedural volume, complication rates, and careful postoperative planning may matter even more.

•

Mental health symptoms in EDS should not automatically be dismissed as “just anxiety.” Pain, poor sleep, mast cell activation, autonomic dysfunction, inflammation, and other biological drivers can profoundly affect emotional health and may need to be treated alongside psychological support.

•

One treatment can sometimes improve far more than one symptom. When appropriately prescribed, low dose naltrexone (LDN) may improve pain, sleep, mood, anxiety, GI symptoms, and overall function by addressing shared underlying mechanisms.

•

PRP and the PICL procedure are promising options for carefully selected patients, particularly given the significant risks and irreversible nature of cervical fusion. While early experience is encouraging, we still need higher-quality studies to better define who benefits most, what the long-term outcomes are, and how these procedures compare with other treatment options.

Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY.

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org

UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic

UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Want more Dr. Linda Bluestein, MD?

Website: https://www.hypermobilitymd.com/

YouTube: https://www.youtube.com/@bendybodiespodcast

Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠

Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠

X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠

LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠

Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/

Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd

Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Learn more about your ad choices. Visit https://megaphone.fm/adchoices

Why do some people with hEDS or HSD report meaningful relief with medical cannabis, while others feel worse, notice no benefit, or experience side effects? And what might these varied responses teach us about pain, the autonomic nervous system, gut function, and nervous system sensitization?

In this episode, host Dr. Linda Bluestein, the Hypermobility MD, is joined by Professor David Nutt, a neuropsychopharmacologist at Imperial College London, and Lucy Stafford, a PhD researcher in clinical neuroscience with lived experience of hypermobile Ehlers-Danlos syndrome.

This is not a hype episode, a recommendation to use cannabis, or medical advice. Instead, it is a careful, curiosity-driven conversation about what is known, what is still emerging, and what remains uncertain about medical cannabis in hEDS and HSD.

Lucy shares her experience of severe illness, high-dose opioid treatment, a feeding tube, repeated ICU stays, and eventually coming off opioids, an experience that helped shape her path into cannabinoid research. Professor Nutt explains the discovery of the endocannabinoid system and why this system may be relevant to pain processing, stress responses, autonomic regulation, immune signaling, and gut function.

Together, they explore how cannabinoids may influence a sensitized nervous system, why responses vary so widely, and why medically complex patients need individualized guidance rather than shame, dismissal, or unsupported promises.

The conversation covers many of the practical questions patients often ask, including the difference between CBD and THC, full-spectrum products, terpenes and the entourage effect, routes of administration, absorption differences, and the importance of a cautious “start low, go slow” approach when cannabis is being considered under appropriate medical supervision.

They also address important safety considerations, including contraindications, drug interactions, psychiatric risk, impairment, dependence, and why cannabis is not appropriate for everyone. The episode closes with a broader discussion of stigma, the emerging science of psychedelics for chronic pain, and the human and financial costs of undertreated complex illness.

The Bendy Bodies podcast is for educational purposes only and is not a substitute for personalized medical advice. Laws, product quality, dosing, and individual risks vary, so patients should consult a qualified healthcare professional before using cannabis or changing any treatment plan.

Takeaways:

The endocannabinoid system is an important regulatory system involved in pain processing, stress responses, immune signaling, gut function, and nervous system homeostasis, yet it receives relatively little attention in medical and neuroscience training.

Cannabinoids do not work like opioids. Rather than simply “blocking” pain, they may influence pain modulation, nervous system sensitization, autonomic tone, and gut motility, though much remains to be studied specifically in hEDS and HSD.

CBD and THC have different effects, benefits, and risks. CBD may reduce some unwanted THC effects for certain people, but responses vary, and dosing should be individualized.

A cautious “start low, go slow” approach is especially important for medically complex patients, particularly those with dysautonomia, medication sensitivity, MCAS-like symptoms, anxiety, or multiple medications.

Individual responses to cannabis vary widely. Differences in absorption, metabolism, product composition, route of administration, and underlying physiology may help explain why one person improves while another worsens or notices no effect.

Cannabis is not right for everyone. Extra caution is warranted for people with a history of psychosis, paranoia, substance use disorder, significant cognitive impairment, fall risk, pregnancy, or medications metabolized through overlapping liver pathways.

Patients deserve balanced information: neither stigma and dismissal nor exaggerated promises. The goal is thoughtful, evidence-informed, individualized decision-making.

Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY.

Head to http://www.cozyearth.com and use my code BENDY for an exclusive 20% off.

Want more Professor Dave Nutt & Lucy Stafford?

X / Twitter link. Profdavidnutt@twitter.com & @lucystaffie

BleuSky:profdavidnutt@bluesky.com

Instagram: @lustaffordphd, @drugscienceuk, @Drug_Science & @EmbodiedNeuro

Want more Dr. Linda Bluestein, MD?

Website: https://www.hypermobilitymd.com/

YouTube: https://www.youtube.com/@bendybodiespodcast

Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠

Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠

X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠

LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠

Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/

Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd

Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org

UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic

UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Learn more about your ad choices. Visit https://megaphone.fm/adchoices

Can a single infection permanently change your health, or does it simply reveal something that was already there?

In this episode, host Dr. Linda Bluestein, the Hypermobility MD, welcomes back Dr. Ina Stephens, Associate Director of the UVA Health EDS & Hypermobility Disorders Center, for an in-depth discussion about Long COVID, post-infectious syndromes, and their connection to Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and immune dysfunction.

Dr. Stephens explains why post-infectious illnesses are real and have been recognized for more than a century, tracing the pattern from the 1917 influenza pandemic and encephalitis lethargica to modern conditions including Long COVID, reactivated Epstein-Barr virus (EBV), Lyme disease, Babesia and other tick-borne infections, and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). She shares the detective work behind her Diagnostic Dilemma Clinic, how a comprehensive history and targeted evaluation uncover hidden diagnoses, and why so many patients with complex chronic illness also have hypermobility.

The conversation explores emerging research showing that people with hypermobility are approximately four times more likely to develop Long COVID, with an even greater risk in those with postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS). Dr. Stephens and Dr. Bluestein discuss the underlying biology, including immune dysregulation, autonomic nervous system dysfunction, vagus nerve dysfunction, mitochondrial dysfunction, and the ways connective tissue disorders may influence recovery after infection.

They also review evidence-informed treatment strategies, including supporting mitochondrial health with coenzyme Q10 (CoQ10), glutathione, and N-acetylcysteine (NAC); the role of low-dose naltrexone (LDN); optimizing iron and vitamin C status; when antiviral medications may be appropriate; intravenous immunoglobulin (IVIG); and glucagon-like peptide-1 (GLP-1) receptor agonists. Finally, they explain why gradually increasing muscle mass and strength may have a greater long-term impact than any single supplement and share practical strategies for supporting recovery and strengthening your regimen at the first sign of illness.

Whether you're living with EDS, HSD, Long COVID, POTS, MCAS, ME/CFS, Lyme disease, or another post-infectious condition, this episode offers practical, science-based insights into why these conditions overlap and what you can do to support healing.

Takeaways:

• Can a virus, Lyme disease, or another infection permanently change your health? Learn why post-infectious syndromes have been documented for more than a century and how infections can trigger chronic illness through immune dysregulation and autoimmunity.

• Why are people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) so much more likely to develop Long COVID? Discover the research linking hypermobility, POTS, mast cell activation syndrome (MCAS), and prolonged recovery after infection.

• What do Long COVID, Lyme disease, ME/CFS, POTS, and other post-infectious conditions have in common? Explore the shared biology of immune dysfunction, autonomic and vagus nerve dysfunction, and mitochondrial dysfunction that may explain multisystem symptoms.

• Which treatments actually help? Hear the evidence behind coenzyme Q10 (CoQ10), glutathione, N-acetylcysteine (NAC), low-dose naltrexone (LDN), iron and vitamin C, antiviral medications, intravenous immunoglobulin (IVIG), and glucagon-like peptide-1 (GLP-1) receptor agonists.

• Could building muscle be one of the most powerful treatments for chronic illness? Learn why increasing muscle mass and strength may have a greater long-term impact than any single supplement, plus Dr. Stephens' practical strategy for boosting your regimen at the first sign of infection.

Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY.

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org

UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic

UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Want more Dr. Linda Bluestein, MD?

Website: https://www.hypermobilitymd.com/

YouTube: https://www.youtube.com/@bendybodiespodcast

Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠

Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠

X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠

LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠

Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/

Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd

Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Learn more about your ad choices. Visit https://megaphone.fm/adchoices

If you could listen to just one conversation about Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS), what would you need to know?

In this listener Q&A episode, producer Aron Korney puts host Dr. Linda Bluestein, the Hypermobility MD, in the hot seat to answer the questions patients ask most about hypermobility, connective tissue disorders, genetic testing, medications, and managing complex chronic illness.

Dr. Bluestein explains why EDS, HSD, POTS, and MCAS are whole-body conditions rather than isolated joint disorders, and how connective tissue affects nearly every organ system. She shares why "less is more," why small, consistent improvements create meaningful long-term progress, and how the placebo and nocebo effects can influence healing.

The conversation also covers the U.S. Food and Drug Administration (FDA) black box warning for fluoroquinolone antibiotics, including ciprofloxacin, levofloxacin, and moxifloxacin, explaining why people with connective tissue disorders should discuss safer alternatives with their healthcare providers when appropriate. Dr. Bluestein then tackles one of the most confusing topics in EDS: genetic testing. She explains why a negative genetic test does not rule out every rare subtype of EDS, how variants of uncertain significance (VUS) and direct-to-consumer genetic reports can be misleading, and why clinical evaluation remains essential, especially when vascular EDS is suspected.

Finally, she discusses how mast cell activation syndrome (MCAS) can amplify pain, migraines, gastrointestinal symptoms, dysautonomia, and other multisystem symptoms, how to obtain accurate laboratory testing, and why she casts a wider diagnostic net when evaluating complex patients. The episode concludes with a simple hypermobility hack that uses vagus nerve activation to help calm a constant fight-or-flight response.

Whether you're newly diagnosed with EDS or HSD, wondering if you have POTS or MCAS, trying to understand genetic testing, or looking for practical strategies to improve your health, this episode delivers the essential concepts every patient should know.

Takeaways:

• Think EDS only affects your joints? Discover why Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), POTS, and mast cell activation syndrome (MCAS) are whole-body conditions that can affect nearly every organ system.

• Could doing less actually help you feel better? Learn why "less is more," how stacking small wins leads to meaningful progress, and how the placebo and nocebo effects can influence your symptoms and recovery.

• Are antibiotics like ciprofloxacin safe if you have EDS or another connective tissue disorder? Understand the FDA black box warning on fluoroquinolones, the risks of tendon rupture, nerve injury, and aortic complications, and when it's worth asking about alternatives.

• Can a negative genetic test still mean you have a rare type of EDS? Learn why clinical features, family history, and red flags often matter as much as laboratory results, especially when vascular EDS is a possibility.

• Could mast cell activation syndrome be making your symptoms worse? Discover how MCAS can amplify pain, migraines, gastrointestinal symptoms, and dysautonomia, why testing is often misunderstood, and the biggest mistakes patients should avoid.

Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY.

Head to http://www.cozyearth.com and use my code BENDY for an exclusive 20% off.

Want more Dr. Linda Bluestein, MD?

Website: https://www.hypermobilitymd.com/

YouTube: https://www.youtube.com/@bendybodiespodcast

Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠

Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠

X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠

LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠

Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/

Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd

Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org

UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic

UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Learn more about your ad choices. Visit https://megaphone.fm/adchoices

What does it really take to build an effective treatment plan for a condition that touches every system in the body, when there is no single magic pill?

In this episode, host Dr. Linda Bluestein, the Hypermobility MD, is joined by recurring co-host Dr. Dacre Knight, Medical Director of the UVA Health EDS and Hypermobility Disorders Center, to complete their series on the MENS-PMMS Method™, Dr. Bluestein's comprehensive treatment framework for hypermobility disorders. Together, they cover the final four components of the MENS-PMMS Method™: psychosocial factors, modalities, medications, and supplements.

The conversation centers on a recurring theme: meaningful improvement rarely comes from one breakthrough, but from stacking many small wins across every domain. They explore the physiologic mind-body connection and why validation is one of the most underrated and accessible interventions, alongside nervous system regulation approaches like CBT, DBT, EAET, EMDR, and Dr. Beth Darnall's Empowered Relief program. On modalities, they discuss heat, massage, acupuncture, dry needling, TENS units, bracing, and the often-overlooked power of diaphragmatic breathing, framed by Dr. Pradeep Chopra's "10% rule." The medication discussion covers a start-low-go-slow philosophy, medication sensitivities and pharmacogenomics, the importance of deprescribing to avoid polypharmacy, and options for POTS and mast cell activation. They close with a candid look at supplements, true deficiencies like scurvy and low vitamin D, the marketing traps to watch for, and a reminder to measure progress by function and quality of life rather than chasing a cure.

Takeaways:

• The MENS-PMMS Method™ emphasizes a whole-person approach, recognizing that meaningful improvement in EDS and HSD comes from addressing multiple domains rather than relying on a single treatment.

• Lasting progress is often the result of accumulating many small gains across different interventions, an approach reflected in Dr. Pradeep Chopra's "10% rule."

• Validation is not just compassionate care—it is a powerful therapeutic tool that can reduce distress, improve engagement, and support nervous system regulation.

• The connection between physical symptoms and emotional well-being is physiologic, underscoring the importance of addressing both body and mind in treatment planning.

• When introducing new therapies, changing one variable at a time can help patients and clinicians better identify what is helping, what is not, and what may be causing side effects.

• Medication management should balance potential benefits with the risks of sensitivities, side effects, and polypharmacy, making deprescribing an important part of high-quality care.

• Supplements are most valuable when they address a documented deficiency or specific clinical need rather than being used as a substitute for a comprehensive treatment plan.

• Patients should be cautious of products or programs that promise cures, quick fixes, or dramatic results for complex chronic conditions.

• Functional improvement, participation in meaningful activities, and quality of life are often better measures of success than symptom elimination alone.

• The most effective treatment plans are individualized, flexible, and designed to evolve as a patient's needs, goals, and circumstances change.

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Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org

UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic

UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Want more Dr. Linda Bluestein, MD?

Website: https://www.hypermobilitymd.com/

YouTube: https://www.youtube.com/@bendybodiespodcast

Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠

Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠

X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠

LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠

Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/

Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd

Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

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Too many diagnoses. Too many opinions. Too many tabs open. Not enough clarity.

If you've ever felt overwhelmed trying to navigate Ehlers-Danlos syndromes (EDS), Hypermobility Spectrum Disorder (HSD), POTS, MCAS, chronic pain, or other complex health issues, you're not alone.

In this episode of Bendy Bodies with the Hypermobility MD, Dr. Linda Bluestein is joined by physician assistant Rebecca Gluck, PA-C, who brings specialized genetics experience from working alongside Dr. Clair Francomano and serves on the Ehlers-Danlos Society's Medical and Scientific Advisory Board and Road to 2026 Research Committee.

Together, they discuss how patients and families can move from information overload to a clearer, more practical plan. They explore how to evaluate online communities, AI tools, direct-to-consumer genetic testing, and conflicting medical opinions without becoming even more overwhelmed.

Rebecca and Dr. Bluestein explain why diagnosis is often the beginning, not the end, of the journey, and why there is no single "EDS expert" who can solve every problem in one visit. They also walk through how to prioritize symptoms, identify the most functionally limiting issues, avoid unnecessary "whack-a-mole" interventions, and build a collaborative care team.

This conversation is for anyone who has too many diagnoses, too many opinions, too many tabs open, and no clear next step. If you are trying to make sense of EDS, HSD, hypermobility, mast cell activation, POTS, chronic pain, genetic testing, AI-generated health information, or proposed procedures, this episode offers practical guidance to help you pause, sort through the noise, and move forward with more clarity.

Takeaways:

• Information overload is real, especially for people with EDS, HSD, POTS, MCAS, chronic pain, and complex multisystem symptoms.

• More information does not always mean more clarity. The key is learning what applies to you, right now.

• AI tools and direct-to-consumer genetic testing can help organize questions, but they are not diagnostic and can make uncertain findings sound more certain than they are.

• A diagnosis can provide validation and shared language, but it is usually the start of building a plan, not the finish line.

• Hypermobile EDS (hEDS) and HSD currently do not have a confirmatory genetic test.

• No single clinician can be the expert in everything. Progress often comes from a collaborative care team and a clinician willing to listen, learn, and help prioritize.

• When multiple diagnoses and procedures are on the table, focusing on the most functionally limiting symptoms can help prevent unnecessary or poorly timed interventions.

• Addressing underlying contributors such as mast cell activation, dysautonomia, sleep, nutrition, pain, and deconditioning may sometimes reduce the need for more invasive steps.

• The goal is not to chase every possible diagnosis at once. The goal is to identify the next best step.

Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today!

Want more Dr. Linda Bluestein, MD?

Website: https://www.hypermobilitymd.com/

YouTube: https://www.youtube.com/@bendybodiespodcast

Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠

Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠

X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠

LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠

Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/

Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd

Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org

UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic

UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Learn more about your ad choices. Visit https://megaphone.fm/adchoices