In this solo episode of the Bendy Bodies Podcast, Dr. Linda Bluestein tackles your most pressing questions about preparing for surgery with conditions like Ehlers-Danlos Syndrome (EDS), POTS, and MCAS. Dr. Bluestein explains how the recent IV fluid shortage may affect you, which supplements to stop before surgery, and why hydration is key for successful outcomes. She also addresses the importance of communicating with your surgeon about your unique medical needs and provides practical pre- and post-surgery hacks to optimize recovery. Packed with valuable tips, this episode is a must-listen for anyone navigating surgery with chronic conditions.

Takeaways:

IV Fluid Shortages Can Impact Surgery: The recent IV fluid shortage in the U.S. means patients may receive less fluid during surgery, making pre-surgery hydration even more critical, especially for those with POTS.

Stop Certain Supplements Before Surgery: Supplements like ginger, garlic, ginkgo, ginseng, fish oil, turmeric, and CBD oil can increase bleeding risk and should be stopped 1-2 weeks before surgery.

Talk to Your Surgeon About Medications: People with POTS or MCAS may need to adjust medications before surgery. Discuss your supplements and medications with your surgical team to avoid complications.

Hydration is Essential: Going into surgery well-hydrated can make IV insertion easier and help prevent complications, especially for those with chronic illnesses like POTS.

Tailor Your Pain Management Plan: Discuss post-surgery pain management with your doctor ahead of time to ensure you have appropriate medications and tools to manage pain and prevent complications like constipation.

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 episode of the Bendy Bodies Podcast, Dr. Linda Bluestein speaks with her personal physical therapist, Dr. Emily Bohan, about the often-overlooked role of pelvic floor health in people with hypermobility, EDS, and related conditions. Emily explains why pelvic floor dysfunction can cause issues like low back pain, hip instability, urinary incontinence, and constipation. She shares her expertise on how to strengthen and relax the pelvic floor safely, emphasizing why Kegels aren't always the answer. Packed with practical tips, including "stop power peeing" and incremental exercise strategies, this episode provides actionable insights to help anyone dealing with pelvic or musculoskeletal pain.

Takeaways:

Pelvic Floor Dysfunction Affects More Than You Think: Issues like low back pain, hip pain, constipation, and urinary incontinence can often be traced to pelvic floor tension or weakness.

Kegels Aren’t Always the Solution: Many people have overly tight pelvic floor muscles, making relaxation and proper breathing more effective than strengthening exercises like Kegels.

Power Peeing is a No-No: Pushing or straining during urination can harm the pelvic floor over time, increasing the risk of prolapse and dysfunction.

Incremental Progress Prevents Flares: For hypermobile individuals, small, controlled increases in movement and load are key to building strength without worsening pain.

Pelvic Floor Therapy Is for Everyone: Pelvic floor physical therapy benefits people of all genders and ages, from postpartum women to male athletes experiencing pelvic pain.

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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Learn about Emily Bohan

IG: @bohanpttraining

TT: @bohanpttraining

FB: Bohan PT Training

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In this deeply meaningful episode of the Bendy Bodies Podcast, Dr. Linda Bluestein reconnects with her very first EDS patient, Lauren Vasko. Lauren shares her remarkable story of resilience, from navigating life in a wheelchair, managing Cranial-Cervical Instability (CCI), and battling POTS, to regaining her independence and teaching art in Kenya. She reflects on her challenges with misdiagnoses, traumatic medical experiences, and the importance of self-advocacy. Lauren reveals the tools, treatments, and mindset shifts that helped her heal, including physical therapy, medications, supplements, and setting boundaries. Her message of hope reminds us that even the hardest journeys can lead to unexpected triumphs.

NOTE: Due to some technical limitations, Lauren's video will showcase lines over her frame, but it should not impact her audio or any of her amazing comments!

Takeaways:

Believe Healing Is Possible: Lauren emphasizes the importance of overcoming a “victim mentality” and truly believing in your ability to improve, no matter how severe your condition feels.

Small Wins Add Up: Success doesn’t come all at once. Lauren highlights how small changes—5% improvements—eventually added up to transformative progress in her life.

Advocate for Yourself: Lauren’s journey shows the importance of questioning medical advice, finding the right providers, and being actively involved in your care.

Physical Therapy and Traction Were Game-Changers: Specialized physical therapy, dry needling, and cervical traction played key roles in helping Lauren avoid invasive surgery for CCI (Cranial-Cervical Instability).

Set Boundaries for Health and Identity: Lauren shares the importance of not letting your diagnosis define you, setting boundaries with support communities, and finding joy in new passions like art and teaching.

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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Learn about Lauren Vasko

Instagram: @asformeandmyhealth

Keep up to date with the HypermobilityMD:

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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein speaks with leading autonomic specialist Dr. Satish Raj about POTS (Postural Orthostatic Tachycardia Syndrome), dysautonomia, and orthostatic intolerance. Dr. Raj delves into the complexity of these conditions, including their diverse causes, challenges in diagnosis, and innovative treatments. Learn why POTS is a "feeling faint" disorder rather than a fainting disorder, the role of compression garments and increased sodium intake, and how non-pharmacological treatments form the foundation of care. Packed with practical advice and expert insights, this episode is essential listening for anyone navigating POTS or related conditions.

Takeaways:

POTS is a "Feeling Faint" Disorder: Unlike fainting disorders, POTS is characterized by persistent symptoms of lightheadedness and discomfort without necessarily leading to fainting.

Non-Pharmacological Treatments First: Increasing salt and water intake, wearing compression garments (focusing on the abdomen and pelvis), and engaging in tailored exercise programs form the foundation of POTS management. Dr. Raj emphasizes some key details, improving the odds of success.  

Individualized Treatment Matters: Compression garments not only aid in blood flow but may also provide joint stabilization benefits for hypermobile patients.

POTS is Multifactorial: The causes of POTS are diverse, ranging from post-viral onset to structural and blood volume issues, requiring a nuanced, patient-specific approach to treatment.

Exercise Takes Time but Works: Low-resistance, reclined exercises like rowing and cycling can improve cardiac output and quality of life, but patients need to commit for at least six weeks to notice meaningful improvements.

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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Learn about Dr. Satish Raj

Website: https://www.ehlers-danlos.com/satish-raj/

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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.

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

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YOUR bendy body is our highest priority!

Keep up to date with the HypermobilityMD:

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Blog: hypermobilitymd.com/blog

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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.

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

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Learn about Dr. Das

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

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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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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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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, 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.

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

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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.

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

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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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