In this informative solo episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, dives into pressing topics impacting the hypermobility community. Learn about the new anesthesia time limit policy from Anthem Blue Cross (that was then reversed), how to manage Mast Cell Activation Syndrome (MCAS), understand food allergy testing, and find the best coaching options for those with complex conditions. 

Takeaways:

New Anesthesia Policy Impacts EDS Patients: Anthem Blue Cross introduced time limits on anesthesia coverage, potentially shifting extra costs to patients if surgeries exceed these limits, making communication with providers essential. (This decision was then reversed after widespread public outcry demonstrating the importance of using our voices)

MCAS Management is Personalized: Keeping a detailed symptom journal and identifying unique triggers are critical for managing mast cell activation syndrome effectively.

Food Allergy Testing Limitations: Standard allergy tests may not reliably identify food triggers for those with MCAS, emphasizing the importance of symptom tracking and tailored elimination diets.

Coaching vs. Medical Appointments: Coaching offers faster access and flexibility for guidance, but differs from medical services as it doesn’t include prescriptions or lab orders.

Hypermobility Hacks for Surgery Prep: Stay informed about your insurance policies, maintain open communication with your healthcare team, and advocate for alternative payment or scheduling options if needed.

Modifying Supplements for Surgery: Nutritional supplements that increase bleeding risk and/or interfere with medications used for anesthesia are discussed. 

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

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.

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In this enlightening episode of the Bendy Bodies podcast, Dr. Linda Bluestein speaks with otolaryngologist Dr. Shu Das about the unique ENT challenges faced by people with Ehlers-Danlos Syndrome (EDS). Dr. Das shares his expertise on common issues like tonsil stones, chronic sore throats, and sinus infections, while diving deep into how EDS impacts vocal cords, nasal health, and even hearing. He offers practical tips for managing symptoms, from antibiotic courses to alternative surgical approaches. Packed with advice on avoiding unnecessary surgeries and improving overall quality of life, this episode is a must-listen for anyone navigating EDS and ENT-related issues.

Takeaways:

EDS Increases ENT Vulnerability: People with EDS are prone to ENT issues like tonsil stones, chronic sore throats, sinus infections, and vocal cord dysfunction due to their connective tissue laxity.

Avoid Unnecessary ENT Surgeries: Surgery should be a last resort for EDS patients due to poor healing and higher complication risks. Alternatives like intracapsular tonsillectomy can minimize trauma when surgery is necessary.

Antibiotic Treatment Requires Adjustment: EDS patients often need longer and earlier courses of antibiotics for sinus infections and other ENT issues to ensure full recovery.

Hot Showers Are Healing: Heat and steam are beneficial for managing sinus issues, ear pain, and overall EDS symptoms, making hot showers a simple yet effective tool. Hot showers can be challenging for those with POTS and or MCAS, but for those who can tolerate them, they can be very helpful.   

Steroids Can Do More Harm Than Good: Intranasal steroids like Flonase should be avoided in EDS patients, as they weaken already fragile connective tissues, potentially exacerbating problems.

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

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.

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Learn about Dr. Das

Website: https://www.usasinus.org/meet-dr-das

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Blog: hypermobilitymd.com/blog

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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein speaks with two brilliant young researchers, Jeevan Mann and Delaney Kenney, about their groundbreaking work in Ehlers-Danlos Syndromes (EDS). Jeevan shares insights into using 3D skin models for understanding hypermobile EDS, while Delaney discusses her biorepository project and the hope for future treatments. They also share personal experiences navigating life with chronic illness, the importance of advocating for accommodations, and the role of community in supporting those with EDS. This inspiring conversation highlights the innovative research that could transform EDS care and diagnosis.

Takeaways:

3D Skin Models Transform Research: Jeevan explains how 3D skin equivalents provide a scalable and cost-effective way to study hypermobile EDS, enabling more replicates and faster results compared to mouse models.

Hope for a Future Without EDS: Delaney highlights how working at the Gates Institute introduced her to the possibility of treatments that could manage or eliminate EDS symptoms in the future.

Importance of Awareness: Both guests emphasize the need for broader education and awareness of EDS among medical professionals to reduce diagnosis delays and improve care.

Advocacy Makes a Difference: Advocating for oneself and seeking accommodations, even when it’s difficult, can significantly improve the quality of life for those with chronic illnesses.

Community Provides Strength: Connecting with others who share similar experiences, as well as learning from diverse approaches within the EDS community, fosters resilience and innovation.

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

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.

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Learn about Jeevan Mann and Delaney Kenney

Instagram: @jeevanmann03 & @delaney_kenney

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Blog: hypermobilitymd.com/blog

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In this candid solo episode of the Bendy Bodies podcast, I share my insights into Mast Cell Activation Syndrome (MCAS) and its intricate connection to hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Reflecting on my personal and professional perspective and cases from my practice, I discuss how MCAS may play a pivotal role in chronic pain and offer practical strategies for identifying and managing symptoms. From my first introduction to MCAS to groundbreaking results in patient care, this episode dives deep into the science and solutions for improving quality of life with these interconnected conditions. Stick around for special hypermobility hacks and helpful resources!

Takeaways:

MCAS as a Root Cause: Mast cell activation syndrome (MCAS) may be the underlying driver behind many symptoms experienced by individuals with hypermobile EDS (hEDS) and POTS, emphasizing the need for targeted treatment.

A Spectrum of Symptoms: MCAS presents a wide variety of symptoms, from pain and fatigue to GI and neurological issues, making it essential to approach diagnosis and management comprehensively.

Therapies Can Be Life-Changing: Tailored treatments for MCAS, such as antihistamines and mast cell stabilizers, can yield dramatic improvements in quality of life when appropriately managed.

Patient Advocacy is Crucial: Self-advocacy and education are vital for navigating complex conditions like MCAS, hEDS, and POTS, especially when facing medical gaslighting or misdiagnosis.

Sharing Information is Empowering: Podcasts, newsletters, and community platforms are invaluable for disseminating complex medical topics like MCAS, helping patients and providers alike understand these intricate conditions.

Show Correction: I said “Mast cells respond to external stimuli but they actually respond to internal and external stimuli (hormones etc)  

Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

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/.

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Blog: hypermobilitymd.com/blog

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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, welcomes Chicago-based physical therapist Wendy Wagner to discuss the unique challenges of physical therapy for hypermobility and Ehlers-Danlos Syndrome (EDS). Wendy, who personally manages EDS, postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS), shares her journey, insights on cervical instability, and tips for choosing the right physical therapist. They dive into the importance of “starting low and going slow” in exercise, strategies for avoiding flares, and how to tailor physical therapy to individual needs. Whether you’re looking to build strength or simply move without pain, Wendy’s expertise provides guidance and practical hacks to make physical therapy safer and more effective for hypermobile bodies.

Takeaways:

Physical Therapy Requires Customization: Traditional PT often doesn’t suit hypermobile patients, who benefit more from individualized programs that focus on stability and gradual strength-building.

Start Low, Go Slow: Many patients with EDS need to begin with very small movements to avoid overloading their joints and worsening pain or instability.

Building Confidence is Essential: Overcoming kinesiophobia (fear of movement) is key for hypermobile patients, often requiring exercises that first build trust in their bodies.

Mindfulness and Body Awareness Matter: Breathing exercises, body awareness, and even posture adjustments can help patients avoid compensatory movements and pain.

Collaboration is Key in PT: Finding a PT willing to learn and work collaboratively is crucial for hypermobile patients to safely navigate physical therapy.

Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

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.

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Learn about Wendy Wagner

Facebook: https://www.facebook.com/wendy4therapy

Website: https://www.wendy4therapy.com/

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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, explores the impact of nutrition on joint hypermobility with Lorna Ryan, chair of the Diet and Nutrition Working Group for the Ehlers Danlos Society. Lorna shares essential advice on how to nourish the body for better pain management, improved gut health, and more energy. From the importance of fiber to balancing nutrients and understanding food sensitivities, this conversation is packed with practical tips. Lorna also shares her favorite recipes and explains how the right foods can help reduce EDS (Ehlers-Danlos Syndrome) symptoms and support gut health. Whether you’re looking to ease GI symptoms, balance energy levels, or discover new dietary approaches for EDS, this episode offers valuable insights and hacks.

Takeaways:

Flexible Diets Work Best: There is no one-size-fits-all diet for EDS; flexible eating plans based on individual needs are more effective than rigid restrictions.

Fiber is Crucial for Gut Health: Fiber is essential for a healthy gut, and those with EDS often need to reintroduce it gradually to avoid GI symptoms.

Adaptability is Key in Nutrition: Lorna emphasizes adapting diets based on changing symptoms, seasons, and life circumstances, helping to better manage health outcomes.

Food as Nourishment, Not Restriction: Instead of focusing on restrictions, Lorna advises seeing food as a source of nourishment that supports healing and strength.

Track, Don’t Restrict: Keeping a food and symptom diary helps identify triggers without unnecessary restrictions, especially for those managing mast cell activation syndrome and dysautonomia.

Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

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.

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YOUR bendy body is our highest priority!

Learn about Lorna Ryan

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

Diet and Nutrition Summit Information

Recordings Package ($30) – The Recordings Package ticket will become available after sale of the Virtual Ticket ends, those who purchase will receive access to the on-demand content from November 3. It does not include access to the live event or our event app Whova, and will be available for 8 weeks after the event airs.

Choose Your Price Access – After sale of the Recordings Package ticket ends, those who would like to access the on-demand content can purchase it on a “Choose Your Price” basis, where they are able to opt-out and access without a cost if they wish.

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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, has an in-depth conversation with Dr. Clair Francomano, a leading expert on connective tissue disorders and Chair of the Medical and Scientific Advisory Board for the Ehlers-Danlos Society. Dr. Francomano shares her insights on diagnosing hypermobile Ehlers-Danlos Syndrome (hEDS) versus hypermobility spectrum disorders (HSD), the current state of genetic testing, and emerging biomarkers (are we close?) that could revolutionize hEDS diagnosis. She discusses the potential connections between EDS, mast cell activation syndrome (MCAS), and postural orthostatic tachycardia syndrome (POTS), offering advice for patients navigating this complex landscape. With updates from ongoing research, this episode is essential listening for those with EDS or related conditions.

Takeaways:

Differences Between hEDS and HSD: Dr. Francomano explains the nuanced distinctions between hypermobile EDS (hEDS) and hypermobility spectrum disorders (HSD), noting that these categories may overlap more than previously thought and might benefit from unified diagnostic criteria in the future.

Genetic Testing Red Flags: While genetic testing can be useful, Dr. Francomano highlights specific “red flags” in family history or personal health that should prompt a referral to a geneticist for further investigation.

Current Limitations of Genetic Testing for hEDS: Unlike other types of EDS, hEDS currently has no identified genetic markers, meaning diagnosis relies on clinical criteria rather than genetic testing alone.

Emerging Biomarkers Show Promise: New studies, such as those exploring fibronectin and calocrine, suggest potential biomarkers for hEDS and HSD, which could transform diagnosis and treatment in the future.

Holistic Approach to Comorbidities: Dr. Francomano discusses how hEDS often presents with comorbidities like POTS and mast cell activation syndrome, recommending a comprehensive, multidisciplinary approach to manage these interconnected symptoms effectively.

Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

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/.

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YOUR bendy body is our highest priority!

Learn about Dr. Clair Francomano

Her Book: https://amzn.to/4e3eSaF

Instagram: @dr.clairfrancomano

Youtube: @DoctorClair

Red Flags List: https://www.bendybodiespodcast.com/p/redflags/

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In this personal solo episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, opens up about her journey from aspiring ballet dancer to renowned hypermobility expert. Dr. Bluestein shares her struggles with joint pain, dislocations, and chronic illness, which led to her diagnosis of Ehlers-Danlos Syndrome (EDS). Along with her personal story, Dr. Bluestein reveals the hacks and strategies that have helped her regain function, manage pain, and improve her quality of life. From practical tips to movement strategies, this episode is packed with advice on navigating hypermobility and chronic pain. Whether you’re newly diagnosed or a long-time EDS warrior, you’ll find plenty of insights and hacks to apply to your own journey.

Takeaways:

Personal Struggles Led to Professional Focus: Dr. Bluestein's own experiences with chronic pain, multiple surgeries, and hypermobility drove her to shift from being an anesthesiologist to becoming a hypermobility expert and advocate.

Hypermobility Affects Multiple Body Systems: Dr. Bluestein's journey highlights how hypermobility and Ehlers-Danlos Syndrome (EDS) can impact various systems in the body, including joints, gastrointestinal issues, and the nervous system.

Tarlov Cyst Surgery Was a Turning Point: Dr. Bluestein's diagnosis of a Tarlov cyst and subsequent surgery gave her tremendous relief after years of pain, sparking her commitment to helping others with similar conditions.

Movement is Critical for Recovery: Despite the fear of injury, Dr. Bluestein emphasizes the importance of movement for those with EDS, as it is essential for maintaining strength and preventing further dysfunction.

Secrets to Living Better: Dr. Bluestein shares the approach she used to improve her own quality of life. This holistic method to help patients manage EDS and chronic pain includes movement, nutrition, psychosocial support, nutritional supplements, and medication. 

Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

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/.

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YOUR bendy body is our highest priority!

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Blog: hypermobilitymd.com/blog

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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, reconnects with her neurosurgeon, Dr. Frank Feigenbaum, who performed her Tarlov cyst surgery in 2011. Dr. Feigenbaum, a leading expert in Tarlov cyst treatment, shares the complexities of diagnosing these cysts, how they affect the nerves, and the groundbreaking surgical techniques he developed. Dr. Bluestein reflects on her personal journey through surgery and recovery, providing listeners with a unique patient-surgeon perspective. Tune in to learn about Tarlov cyst symptoms, diagnostic challenges, and how surgery can restore quality of life.

Takeaways:

Tarlov Cysts Can Be Symptomatic: While often dismissed as asymptomatic, Tarlov cysts can cause severe pain and neurological symptoms by compressing surrounding nerves.

Selective Nerve Blocks Are Key for Diagnosis: To confirm that Tarlov cysts are the source of symptoms, selective nerve blocks can help diagnose and plan surgical interventions.

Surgery Is a Lasting Solution: Dr. Feigenbaum’s unique surgical approach, involving draining and wrapping the cysts, has shown long-term success with no cyst recurrence at the treated sites.

Recovery Takes Time: Nerve healing after surgery can take weeks, months, or even years. Patience is key, as symptoms may improve gradually.

The Least Invasive Approach Wins: Dr. Feigenbaum emphasizes doing as little as possible to the cysts during surgery to reduce nerve damage, offering the best chances for recovery.

Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

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/.

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YOUR bendy body is our highest priority!

Learn about Dr. Frank Feigenbaum:

Website: https://www.frankfeigenbaum.com

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In this inspiring episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, interviews Adji Cissoko, principal dancer with the Lines Ballet Company. Adji shares her incredible journey of balancing natural flexibility with the strength needed to thrive in professional ballet. From dealing with injuries to discussing the importance of sleep, nutrition, and cross-training, Adji provides a glimpse into the discipline required to succeed in dance while taking care of her body. Listeners will learn valuable lessons on injury prevention, building strength, and listening to your body, straight from one of the most captivating dancers in the world.

Takeaways:

Strength is Essential: While flexibility came naturally to Adji, she quickly learned that building strength is crucial for controlling movement, especially in ballet. Strength allows dancers to safely showcase their flexibility without risking injury.

Listening to Your Body: Adji emphasized the importance of tuning into your body to understand when to push through fatigue and when to rest, striking the right balance to avoid injury while still progressing.

Sleep and Recovery Matter: Adji prioritizes sleep, often getting 9 to 10 hours per night, to allow her body to recover and stay resilient, particularly in demanding environments like high-altitude performances.

Cross-Training for Dance Longevity: To maintain balance and strength, Adji incorporates Pilates, gyrotonics, and strength training into her routine, allowing her to stay in peak condition and mitigating injury risks.

Flexibility Doesn’t Equal Strength: Adji learned early on that flexibility alone isn’t enough for successful dancing—building core and muscle strength is key to controlling movements and maintaining beautiful lines.

Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

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.

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YOUR bendy body is our highest priority!

Learn about Adji Cissoko:

Instagram: @adji_cissoko

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