On today’s episode of @bendy_bodies, we explore the pros and cons of an official EDS diagnosis. A diagnosis can lead to better medical care, access to specialists, and proper treatment plans. But on the flip side, it can also come with insurance challenges, stigma, and difficulty getting life or disability coverage. 💬 Have you or someone you know struggled with the decision to seek a formal diagnosis? Share your thoughts in the comments! ⬇️ #EhlersDanlosSyndrome #Hypermobility #ChronicIllness #BendyBodiesPodcast #RareDisease #MedicalDiagnosis #ChronicPain #DisabilityAwareness #GeneticDisorders #PatientRights #LifeInsurance #HealthcareAccess #EDSCommunity #MedicalEthics Medical Advice Disclaimer: This information is for educational purposes only and is not a substitute for professional medical advice. Always consult your doctor before making any healthcare decisions.

In this solo Q&A episode, Dr. Linda Bluestein answers your biggest hypermobility questions, tackling topics like whether getting an official EDS (Ehlers-Danlos Syndromes) diagnosis is worth it, which pain medications actually help, how to improve posture, and the growing stigma around EDS. She also discusses visceroptosis (organ prolapse), posture braces, and the legalities of medical centers refusing EDS patients. Dr. Bluestein shares practical hypermobility hacks and gives insight into the challenges patients face when seeking care. If you’ve ever wondered how to advocate for yourself, manage pain, or improve daily function, this episode is packed with expert advice and actionable tips. Takeaways: Should You Get an EDS Diagnosis? – Listen as Dr. Bluestein describes how an official diagnosis can provide validation and access to specialists, yet may also lead to insurance and medical stigma issues. Pain Medications for EDS Are Off-Label – Dr. Bluestein explains which medications she has found most helpful for managing symptoms. How Can Posture Be Improved – Dr. Bluestein shares which posture-support garments she prefers and how to use them in a way to avoid muscle weakening. EDS Stigma is Getting Worse – Misinformation causes some doctors to dismiss EDS patients as exaggerating or attention-seeking. Learn how to advocate and educate your providers. Some Medical Centers Refuse EDS Patients – While emergency rooms must treat everyone, clinics and specialists can decline to see EDS patients, making self-advocacy and persistence essential. Listen in to hear how you can avoid having this happen to you. 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/. YOUR bendy body is our highest priority! Keep up to date with the HypermobilityMD: YouTube: youtube.com/@bendybodiespodcast Twitter: twitter.com/BluesteinLinda LinkedIn: linkedin.com/in/hypermobilitymd Facebook: facebook.com/BendyBodiesPodcast Blog: hypermobilitymd.com/blog 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

A good physical therapist is worth their weight in gold for hypermobile patients. No amount of fancy treatments can replace the long-term benefits of PT. It's like dating. You might not find the right PT on the first try but keep trying!

"Without healthy connective tissue, we have no health." Organs may not stay in their proper place, disrupting cellular communication, and causing widespread health issues.

Dr. Watto, cohost of the popular podcast, Curbsiders, explains the role of an internist in your care on Episode 133 of the Bendy Bodies Podcast. It is recommended to get a PCP (primary care provider) BEFORE you think need one because they can help you with acute (and chronic problems) and help coordinate your care.

On today's episode of @bendy_bodies with Dr. Petra Klinge, we explore the clinical presentation of TCS as well as best practices for recovery after surgery—and some of them might surprise you! 😲 Dr. Klinge, a world renowned neurosurgeon, is known for her work on occult tethered cord (where the spinal cord is tethered - or abnormally fixed - to the lower part of the spinal column - without visible signs). 💬 Had you heard of occult TCS before? Do you know anyone suffering from TCS or has had surgery? Drop your thoughts in the comments! ⬇️ #TetheredCordSyndrome #EDS #Hypermobility #TCSRecovery #ChronicPain #PostSurgeryTips #MastCellActivationSyndrome #Dysautonomia #BendyBodiesPodcast #DrPetraKlinge #CollagenDisorder #NeurologicalHealth #ConnectiveTissueDisorder #EhlersDanlosSyndrome #HypermobileEDS #ChronicIllnessCommunity Medical Advice Disclaimer: This information is purely educational and does not intend to be a substitute for personalized medical advice. Always consult with your doctor before making any changes.

In this episode of the Bendy Bodies Podcast, Dr. Linda Bluestein welcomes Dr. Petra Klinge, a renowned neurosurgeon specializing in tethered cord syndrome (TCS), Chiari malformation, and cerebrospinal fluid (CSF) disorders. They dive deep into occult tethered cord syndrome, a condition where MRI scans appear normal, yet patients still experience neurological symptoms, chronic pain, and bladder/bowel dysfunction. Dr. Klinge explains how tethered cord affects EDS patients, the role of connective tissue disorders, and what makes someone a good candidate for surgery. Whether you’ve been struggling with undiagnosed spinal issues or are considering tethered cord release surgery, this episode is packed with valuable insights and cutting-edge research. Takeaways: Tethered Cord Can Be “Occult” (Hidden on MRI) – Many patients with classic tethered cord symptoms are dismissed because their MRI appears “normal.” A clinical diagnosis is key. EDS Patients Are at Higher Risk – Changes in collagen and the extracellular matrix make individuals with Ehlers-Danlos Syndrome more prone to tethered cord syndrome, which can be congenital or acquired. Tethered Cord Syndrome Affects the Entire Spine – While traditionally thought to impact only the lower body, new research suggests TCS can cause upper body pain, weakness, and neurological dysfunction. Surgery Isn’t Always the First Step – Physical therapy, craniosacral therapy, and manual techniques may help some patients, but progressive neurological decline may require surgical release. Retethering is Possible After Surgery – Around 7% of patients may need a second surgery due to scar tissue reattaching the spinal cord, but new surgical techniques are improving long-term outcomes. Articles referenced in the episode: https://pubmed.ncbi.nlm.nih.gov/38489815/ https://pubmed.ncbi.nlm.nih.gov/38202013/ https://pubmed.ncbi.nlm.nih.gov/35307588/ 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/. Learn more about Human Content at http://www.human-content.com Podcast Advertising/Business Inquiries: sales@human-content.com YOUR bendy body is our highest priority! Learn about Dr. Petra Klinge Website: https://www.brownhealth.org/providers/petra-m-klinge-md-phd Keep up to date with the HypermobilityMD: YouTube: youtube.com/@bendybodiespodcast Twitter: twitter.com/BluesteinLinda LinkedIn: linkedin.com/in/hypermobilitymd Facebook: facebook.com/BendyBodiesPodcast Blog: hypermobilitymd.com/blog Part of the Human Content Podcast Network

Stabilizing mast cells is key to reducing brain fog and fatigue. I focus on immune stabilization more than just histamine control, which doesn’t work for everyone. Check out the full episode for more tips.