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Published by Dr. Linda Bluestein
Whether you’re bendy with all the benefits or hurting in all the wrong places, you’ve come to the right place for all things hypermobility. Connective tissue disorders like Ehlers-Danlos Syndromes (EDS) are often dismissed or overlooked by healthcare providers as a cause of chronic pain. But if you or someone you care about struggles with the life-altering symptoms of hypermobility, you should know YOU ARE NOT ALONE! At the Bendy Bodies Podcast, we understand. Each week, join Dr. Linda Bluestein (The Hypermobility MD) as she pulls back the curtain on how to prevent injury and unnecessary suffering in “double-jointed” individuals seeking a more comfortable life in their unique, complex “bendy bodies.” When you tune in, you’re engaging in more than a podcast. Both on-air and online, you’re joining a supportive community where patients, caregivers, and healthcare professionals trade insights, life hacks, and inspiring stories to embrace our Bendy Bodies journey together!
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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 Malpractice00:28 Welcome and Guest Intro01:20 Boutique Sponsor Break01:54 Why Build My Doctor Friend05:52 Choosing AI Platforms07:15 Record Linking Pitfalls09:21 Always Ask What It Knows12:35 Three Models for Safety15:50 Privacy Reality Check19:29 Reassurance Trap Lawsuit21:47 Making One Model a Jerk23:27 Urgent Care MRI Story27:18 Fixing Sycophancy Prompts32:12 Doctors React to AI35:26 Avoiding AI Misinformation38:51 Privacy and Medical Records41:46 Finding EDS Savvy Doctors46:24 Talking AI With Your Doctor48:46 My Doctor Friend Demo55:31 AI in Medicine Next 5 Years58:41 Carbon Footprint and Wrap Up Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Early00:34 Meet Dr Ina Stephens02:12 Fermented Foods MCAS02:39 Microbiome Support Basics10:47 Antibiotics Probiotics15:49 Medical Distrust CPS Risk29:31 Migraine Treatments Botox41:16 Feverfew Dosage Basics41:30 Avoiding Rebound Headaches43:12 CGRP Rescue Meds Explained44:51 Why Diagnose EDS Early49:05 Early Intervention and Prevention56:42 Parenting Tips and Clinic Access01:06:54 LDN Patience and Closing Resources Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Debate00:28 Meet the Guests02:54 Why BIC Was Founded07:22 Defining Brain Inflammation09:44 Biomarkers and Imaging Advances18:12 Unhide Platform and Real World Data25:55 Comorbidities and Survey Cadence31:40 Survey Fatigue Solutions32:49 Tools Beyond Beighton34:16 Research Priorities Wish List35:41 Biomarkers EVs Immune Profiling38:37 Pediatric Focus Early Signs46:34 Building Pediatric Platform53:07 Hacks Resources And Wrap Up Learn more about your ad choices. Visit megaphone.fm/adchoices
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 Learn more about your ad choices. Visit megaphone.fm/adchoices
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 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-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 Opens00:36 Show Intro and Fan Qs02:38 Adult Tongue Tie Talk12:09 hEDS in Men Question16:58 10 Percent Rule Toolkit21:36 Pregnancy Planning Advice28:02 Prematurity and Trauma Links33:46 Trauma Begets Trauma34:52 Stellate Blocks And Vagal Stimulation36:20 Postmenopausal Bleeding And MCAS38:36 Endometriosis And Perimenopause42:19 Hormones Versus Hypermobility45:49 Clinician Advocacy And Learning49:57 LAST And Tongue Numbness Learn more about your ad choices. Visit megaphone.fm/adchoices
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: collagenadvocacynetwork.org 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. 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 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 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 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 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 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. Go 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 megaphone.fm/adchoices
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 megaphone.fm/adchoices
"Exercise is good for EDS." So why do so many hypermobile people get worse when they try it? In this episode of Bendy Bodies with the Hypermobility MD, Dr. Linda Bluestein is joined by co-host Dr. Dacre Knight, Medical Director of the UVA Health EDS and Hypermobility Disorders Center, and physical therapist Dr. Morgan Groover to discuss one of the most misunderstood aspects of hypermobility care: how to make physical therapy and exercise work for a hypermobile body. Many people with Ehlers-Danlos syndromes (EDS), Hypermobility Spectrum Disorders (HSD), chronic pain, POTS, and related conditions have been told to exercise more, only to experience increased pain, injury, or setbacks. Others have been told to avoid activity altogether. In this conversation, Dr. Groover explains why both approaches can miss the mark. Together, they explore how hypermobile joints, muscles, tendons, and connective tissues respond to load, why individualized physical therapy is essential, and how the right amount of strengthening can improve joint stability, function, and quality of life. Dr. Groover shares practical strategies for determining an appropriate starting point, progressing safely, interpreting pain and soreness, and avoiding the common cycle of overdoing it and crashing. They also discuss the powerful role language plays in rehabilitation, how fear of movement can contribute to disability, and why hypermobile patients can often continue participating in activities they love, including running, dancing, yoga, and sports, with the right support and guidance. Whether you're living with EDS, HSD, generalized joint hypermobility, chronic pain, or you're a clinician looking to better support hypermobile patients, this episode offers practical, evidence-informed insights that can help change the way you think about movement and rehabilitation. Takeaways: • Why physical therapy often fails hypermobile patients and what successful EDS-informed rehabilitation looks like • The difference between productive soreness and pain that signals excessive loading • How muscles and tendons adapt to exercise and support joint stability in hypermobility • Why both overloading and underloading can contribute to worsening symptoms • How to safely return to exercise, sports, dance, yoga, and other meaningful activities • Why language matters when discussing joint instability, weakness, and pain • How fear of movement can contribute to deconditioning and disability • Practical strategies for building strength, resilience, and confidence in a hypermobile body Find the episode transcript here. Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today! Want more Morgan Groover? Instagram: @morgan.groover.dpt Website: https://www.ehlers-danlos.com/directory/morgan-groover/ 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 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 megaphone.fm/adchoices
What happens when the original voices behind Bendy Bodies come back together 200 episodes later? In this special milestone episode, Dr. Linda Bluestein reunites with her original co-host, dance medicine specialist Jennifer Milner, and the very first guest ever featured on the podcast, Dr. Moira McCormack. Long before hypermobility became a topic of widespread discussion, Dr. McCormack was asking important questions. A former Royal Ballet dancer, former Lead Physiotherapist for The Royal Ballet, and pioneering researcher, she was among the earliest clinicians investigating joint hypermobility in dancers and the challenges that often accompany it. Together, they reflect on more than two decades of progress in our understanding of hypermobility, Ehlers-Danlos syndromes (EDS), and Hypermobility Spectrum Disorders (HSD), while exploring the many misconceptions that still persist today. The conversation goes far beyond flexibility. Dr. McCormack explains why many hypermobile dancers must work harder, recover more strategically, and develop greater body awareness than their peers. The discussion also dives into the often-overlooked multisystem effects of hypermobility, including fatigue, pain, dysautonomia, gastrointestinal symptoms, and mast cell activation syndrome (MCAS). Drawing on decades of experience working with elite dancers and hypermobile patients, Dr. McCormack shares practical insights on injury prevention, individualized rehabilitation, hands-on assessment, and the art of teaching movement with patience and precision. Whether you're a dancer, athlete, parent, teacher, clinician, or someone navigating hypermobility yourself, this episode offers both a fascinating look at how far the field has come and a roadmap for where we still need to go. Most importantly, it reminds us that success in a hypermobile body isn't about having the most flexibility. It's about developing the control, strength, awareness, and resilience to use that flexibility well. Key Takeaways • This episode reunites the same three people who launched Bendy Bodies with Episode 1, creating a full-circle conversation 200 episodes later. • Hypermobile dancers often work harder behind the scenes than audiences realize. Fatigue, recovery, and injury prevention are frequently bigger challenges than flexibility itself. • Flexibility without control can increase injury risk. Strength, stability, motor control, and body awareness are essential for long-term success. • Hypermobility can affect far more than the joints, contributing to symptoms involving the nervous system, gastrointestinal tract, immune system, and cardiovascular system. • Rehabilitation is rarely one-size-fits-all. Hypermobile individuals often benefit from individualized assessment, hands-on treatment, and slower, more deliberate progression. • Teachers, parents, and healthcare professionals play a critical role in recognizing early warning signs and supporting healthy development in young dancers. • One of the most powerful injury-prevention strategies may be surprisingly simple: learning to master posture and alignment before adding movement. • Moira also honors the influence of the late Professor Rodney Grahame, with whom she conducted her early research and met frequently to discuss joint hypermobility, connective tissue disorders, and the many unanswered questions that continue to shape the field today. Find the episode transcript here. Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today! Want more Jennifer Milner? Instagram: @jennifer.milner Website: https://www.jennifer-milner.com/ Want more Dr. Moira McCormack? https://iseh.co.uk/member/moira-mccormack 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 megaphone.fm/adchoices
Could one of the most overlooked drivers of chronic pain, fatigue, poor sleep, and slow recovery be hiding in plain sight? In this episode, Dr. Linda Bluestein and co-host Dr. Dacre Knight sit down with integrative medicine pioneer Dr. Gregory Plotnikoff to unpack why Vitamin D may be one of the most important, misunderstood, and cost-effective interventions in modern medicine. But this conversation goes far beyond bone health. Dr. Plotnikoff explains why Vitamin D functions more like a hormone than a vitamin, influencing over 2,000 genes tied to immune function, mood, sleep, inflammation, muscle health, and pain regulation. Together, they explore why profound deficiencies are shockingly common, even in sunny climates, and how low levels may contribute to chronic musculoskeletal pain, tendinopathies, stress fractures, fatigue, and complex chronic illness. The discussion also dives into practical, foundational medicine for patients with Ehlers-Danlos Syndromes (EDS), POTS (postural orthostatic tachycardia syndrome), MCAS (mast cell activation syndrome), chronic pain, and other multisystem conditions, including the “Top 5” lab tests Dr. Plotnikoff believes are essential for understanding the bigger picture of health. If you’ve ever been told your labs are “normal” while still feeling awful, this episode may change how you think about chronic illness and foundational health. Takeaways: • Vitamin D is actually a hormone that regulates gene expression affecting pain, sleep, energy, immunity, and bone health. • Chronic musculoskeletal pain, stress fractures, and tendon problems may sometimes be linked to severe Vitamin D deficiency. • Many people remain profoundly deficient despite living in sunny climates because Vitamin D synthesis is blocked by glass, sunscreen, clothing, and indoor lifestyles. • Vitamin D dosing is often weight-dependent, meaning some individuals require significantly higher doses to reach adequate levels. • Dr. Plotnikoff’s “Top 5” foundational labs for complex chronic illness include: Find the episode transcript here. Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today! Want more Dr. Gregory Plotnikoff? www.MNpersonalizedmedicine.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 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. 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 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 megaphone.fm/adchoices
You have been told it is just weight. Just diet. Just effort. For millions of women with lipedema, that is not just wrong. It is decades of unnecessary suffering. In this episode of Bendy Bodies, I sit down with Kasi Grosvenor and Jesse Cochrane from the Lipedema Foundation to pull back the curtain on one of the most misdiagnosed and misunderstood conditions in women's health. Kasi spent decades fainting, being dismissed, and searching for answers before finally finding clarity at the intersection of lipedema and hereditary alpha tryptasemia. Her story is not unusual. It is the norm for this patient population. Jesse brings the science. Lipedema is not obesity. It is not a lifestyle problem. It is a chronic medical condition involving disproportionate, painful, fibrotic adipose tissue that resists caloric restriction and exercise by design. Emerging research points to extracellular matrix dysfunction as a potential shared biological thread connecting lipedema to Ehlers-Danlos Syndromes (EDS), hypermobility, Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). The overlap is not coincidental. It may be biological. We cover what clinicians and patients both need to understand: Why the absence of biomarkers has made diagnosis so difficult, and what the evolving definition of the disease actually means for patients seeking answers. Why lipedema tissue behaves differently from typical fat, and why standard weight loss advice not only fails but can cause harm. What conservative management actually looks like, including medical compression, pneumatic compression pumps, anti-inflammatory nutrition, and specialized manual therapies. The truth about lipedema removal surgery. This is not cosmetic liposuction. It is a medical intervention to remove diseased tissue, and its outcomes depend heavily on what comes before and after the procedure. If you have been dismissed, misdiagnosed, or told to try harder, this episode is for you. Takeaways: Lipedema is not obesity. The tissue is structurally and biologically different, and it does not respond to diet and exercise the way standard fat tissue does. Pain and tenderness in the affected tissue is a hallmark feature, not a coincidence. If you have EDS, HSD, POTS, or MCAS, lipedema may be part of your picture. The biological overlap is real and increasingly supported by research. A normal BMI does not rule out lipedema. Diagnosis is clinical, not based on weight. Lipedema removal surgery is a medical procedure. Calling it cosmetic liposuction misrepresents both the tissue and the intent. The absence of biomarkers does not mean the condition is not real. It means the research has not caught up yet. Want more Kasi Grosvenor & Jesse Cochrane? https://x.com/LipedemaFndn https://www.instagram.com/lipedema_fndn/ https://www.facebook.com/Lipedema/ https://www.youtube.com/channel/UCvpjYrsAUGB0-evCNqsSrGA https://www.lipedema.org/ Go AquaTru.com now for 20% off (your purifier) using promo code BENDY. Head to cozyearth.com and use my code BENDY for up to 30% off — but only for a limited time. This exclusive offer runs from May 18th through June 1st only, so don't wait. 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 megaphone.fm/adchoices
Most people with EDS or HSD have been told to "exercise more," "eat better," and "sleep on a schedule," usually by someone who has never tried to do any of those things in a hypermobile, pain-flaring, dysautonomic body. This episode is different. Dr. Linda Bluestein and Dr. Dacre Knight break down the foundational layer of the MENS PMMS treatment algorithm, a structured framework built specifically for the complexity of Ehlers-Danlos syndromes and hypermobility spectrum disorders. MENS stands for Movement, Education, Nutrition, and Sleep. This conversation goes far beyond surface-level advice to explain what each category actually means when your connective tissue, nervous system, and autonomic function are all working against you at once. You will learn why standard physical therapy can set EDS patients back and what to look for in a provider who actually understands joint protection. You will understand central sensitization at a biological level, not just as a buzzword, and why reframing pain as a nervous system state rather than a structural inevitability changes everything. You will hear why nutrition conversations for the EDS population need to start with GI dysfunction and malabsorption, not calories and BMI. And you will finally get a clear explanation of why pain and poor sleep feed each other in a vicious cycle, and what interrupts it. Whether you are a patient who has heard "your labs are normal" one too many times, or a clinician building a practice that actually serves this community, this episode gives you a concrete starting point. The body you are working with is not broken. It just needs a different playbook. Takeaways: Why most PT makes EDS worse before it makes it better, and the "slow and low" approach that actually builds joint stability without triggering a flare. The neuroscience of "no plastic" pain. Central sensitization is not in your head. Understanding how the nervous system learns to amplify pain is the first step toward teaching it something different. Nutrition beyond BMI. In EDS and HSD, postprandial distress, malabsorption, and GI dysmotility are often the bigger drivers of health outcomes than anything showing up on a standard nutrition screening. The pain-insomnia trap. Pain activates your sympathetic nervous system. A revved-up sympathetic nervous system blocks restorative sleep. Poor sleep amplifies pain sensitivity. Here is how to break the cycle. Motion is lotion, done right. Low-impact, recumbent movement is not a consolation prize. It is one of the most effective tools for stabilizing autonomic function in this population. Find the episode transcript here. Go 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 megaphone.fm/adchoices
What if being too flexible is exactly what makes surgery fail? And what if your doctor thinks your shoulder is fine because you can lift your arm to 90 degrees, not realizing that for you, 90 degrees might as well be a frozen joint? Your joints bend farther than most. But when something goes wrong, that same flexibility may be working against you and your surgeon may not know it yet. In this episode, Dr. Linda Bluestein sits down with Dr. Jocelyn Wittstein, orthopedic surgeon at Duke University, to pull back the curtain on one of medicine's most misunderstood intersections: hypermobility, connective tissue disorders, and orthopedic care. Why do surgeons sometimes refuse to operate on patients with hypermobility or EDS? What actually happens during an "atraumatic" dislocation and why does it feel so different from a typical injury? And how does estrogen quietly shape the strength of your connective tissue across your lifetime? Dr. Wittstein walks us through the critical distinction between joint laxity and instability a difference that changes everything about treatment. She explains the frozen shoulder paradox, where a hypermobile patient loses dramatic range of motion but still looks "normal" on paper. She breaks down what PRP can and cannot do, and when regenerative medicine is worth considering. And she reveals why surgical technique itself has to change when the patient has variant connective tissue. Whether you are managing chronic subluxations, weighing a surgical decision, or just trying to understand why your body plays by different rules this conversation gives you the framework to advocate for smarter care. Takeaways: Laxity Is Not Instability: Laxity is how far your joint moves. Instability is what happens when you can no longer control that movement. These are not the same problem. The Dislocation Spectrum: Hypermobile joints often dislocate with little or no trauma -- and reduce just as easily, because the tissues have more give and recoil. This is a fundamentally different mechanism than what surgeons typically train for. Why Surgery Gets Complicated: Surgeons may modify technique entirely for hypermobile patients using donor tendons or internal bracing, because standard repairs fail at higher rates when connective tissue itself is the variable. Estrogen and Your Joints: Estrogen influences collagen synthesis and joint inflammation. Its withdrawal during menopause can trigger increased pain and fibrotic conditions, including frozen shoulder, in ways that are rarely discussed. The Frozen Shoulder Paradox: A hypermobile patient presenting with 90 degrees of shoulder motion might look fine to any other doctor. For them, it may represent a catastrophic loss from baseline and will almost certainly be missed without the right clinical lens. What PRP Can (and Cannot) Do: PRP shows legitimate evidence for reducing inflammatory markers in mild arthritis. Bone marrow concentrate, despite the hype, has not yet proven superior. Know the difference before you invest. Find the episode transcript here. Want more Dr. Jocelyn Wittstein? @Jocelyn_wittstein_md https://ortho.duke.edu/jocelyn-r-wittstein-md Go to cozyearth.com and use my Promo Code: BENDYBOGO Go AquaTru.com now for 20% off (your purifier) using promo code BENDY. 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 megaphone.fm/adchoices
In this "MythBusters" edition of the Bendy Bodies Podcast, Dr. Linda Bluestein and recurring co-host Dr. Dacre Knight tackle the persistent misconceptions surrounding Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and their frequent companions, Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). Dr. Knight, Medical Director of the UVA Health EDS and Hypermobility Disorder Center, shares why hypermobile EDS (hEDS) is a serious condition even when not life-threatening, and why a negative genetic test doesn't rule out a diagnosis. The conversation dives deep into the "invisible" impact of these disorders on long-term disability and work ability, while offering hope through a better understanding of pain processing and nociplastic pain. From debunking the idea that POTS is merely deconditioning to navigating the controversial waters of MCAS, this episode empowers patients and clinicians with the knowledge needed to look past the surface and recognize the systemic reality of bendy bodies. Takeaways: EDS Severity: Hypermobile EDS and HSD are serious, chronic conditions that cause multi-system impairment and long-term disability, regardless of whether they are immediately life-threatening. Genetic Testing Limits: Current genetic testing cannot rule out hEDS or HSD because their specific genetic markers remain unknown; diagnosis still relies on clinical history and physical assessment. POTS is Systemic: POTS is far more than simple deconditioning or a cardiac issue; it is a neurologic dysfunction of the autonomic nervous system that impacts everything from heart rate to temperature regulation. The MCAS Spectrum: While MCAS criteria are still evolving and controversial, focusing on clinical patterns and safe treatment responses can improve quality of life even when lab tests (e.g., tryptase) are negative. Pain vs. Damage: Pain is a complex, bidirectional experience; patients can experience significant pain without visible structural damage due to central sensitization and dysfunctional pain signaling. Find the episode transcript here. Want to learn more about the UVA EDS Center? Go AquaTru.com now for 20% off (your purifier) using promo code BENDY. 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 megaphone.fm/adchoices
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