Bendy Bodies with the Hypermobility MD, Dr. Linda Bluestein Dr. Linda Bluestein

Dr. Linda Bluestein celebrates 100 episodes of Bendy Bodies discussing the most rewarding part of hosting the podcast and the challenges of podcasting. She emphasizes the importance of balancing the complexity of EDS and the need for healthcare professionals to understand and empathize with the struggles of patients with hypermobility conditions. Dr. Bluestein discusses the symptom burden experienced by individuals with EDS and the challenges they face in getting their symptoms understood and validated by healthcare professionals. She shares her approach to treatment as well as the top three concerns among EDS patients.  Dr. Linda Bluestein and guest host Kate Colbert discuss the importance of effective communication between doctors and patients, and the need for healthcare professionals to understand the patient's perspective. Dr. Bluestein shares her goals for the Bendy Bodies podcast and they end with a hypermobility hack for traveling with EDS.

Takeaways

Healthcare professionals should strive to understand and empathize with the struggles of patients with hypermobility conditions and recognize their heroic efforts in managing their symptoms. Offering the correct dose of hope is difficult, as it is important to be responsible and not oversimplify the complexities of hypermobility conditions.Individuals with EDS often experience a high symptom burden, including pain, fatigue, and gastrointestinal symptoms.Getting symptoms understood and validated by healthcare professionals can be challenging for EDS patients.Empathy and understanding from both patients and doctors are crucial in managing EDS symptoms.Treatment approaches for EDS are discussed. Effective communication between doctors and patients is essential for better care. Patients can learn how to communicate better and doctors can understand how patients think.The Bendy Bodies podcast aims to improve care for people with symptomatic joint hypermobility, educate healthcare professionals, and support nonprofit organizations.Patients, caregivers, advocates, and medical professionals can contribute to the EDS community by representing it well, sharing their stories, and spreading awareness about the podcast.Chapters ➡

00:00 Introduction and Celebration of 100 Episodes
25:52 Understanding and Empathizing with Patients' Struggles
36:40 The Top Three Concerns Among EDS Patients
41:20 The Most Effective Treatment Approaches for EDS
44:23 The Role of Mast Cell Activation Syndrome (MCAS)
52:12 How an EDS Doctor can Facilitate a Patient's Healthcare Team
01:03:16 The Future and Goals of the Bendy Bodies Podcast: Improving Care and Spreading Awareness
1:05:21 Improving Quality of Care for Everyone
01:14:05 Hypermobility Hack: Packing Heavy and Lightening the Burden on Your Body

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/.      

YOUR bendy body is our highest priority! 🧬🔬🦓

Resources:  

https://journals.lww.com/topicsinpainmanagement/citation/2023/04000/hope_for_hypermobility__part_2_an_integrative.1.aspx

https://www.sciencedirect.com/science/article/abs/pii/S0161589014000546

https://www.edsguardians.org/

#MedicalPodcast #PatientAdvocacy #EDSAwarenessMonth #EDSAwareness #DoctorPatientCommunication #HSD #MCAS #ChronicIllness #EmpathyInMedicine #HealthcareInsights #Hypermobility #ZebraStrong  #ZebraWarriors #hEDS #HypermobileEhlersDanlosSyndrome #Podcast #BendyBodiesPodcast #BendyBodies #BendyBuddy #HypermobilityMD #100thEpisode

Summer Dashe, a former news anchor and advocate for the chronically ill, shares her POTS and EDS journey.  She covers how she manages her symptoms in everyday life and the challenges of getting diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers-Danlos Syndrome).  #dysautonomia #ChronicIllness #POTSAwareness 

Takeaways

Getting a POTS diagnosis can be challenging, and it often takes multiple visits to different doctors before receiving a proper diagnosis.Awareness about POTS among doctors has improved over the years, but there is still a need for more education and understanding.Finding supportive coworkers and a job that accommodates your symptoms is crucial for managing a chronic illness in the workplace.Open and honest communication is key when asking for accommodations, and providing informed reasoning behind the request can help employers understand the need.Remote work has opened up opportunities for individuals with chronic illnesses, allowing them to work in a way that suits their symptoms and abilities.Managing the unpredictability of POTS requires self-compassion and finding strategies that work for you, even if it may not always feel graceful. Know your limits and make decisions based on your boundaries to remain reliable in work and personal life.Accepting a lifelong condition can be challenging, but it allows for a more realistic approach to treatment.Genetic research and advancements in technology provide hope for future awareness, treatment, and potentially a cure.It's important to be honest and transparent about the realities of chronic illnesses to better prepare patients for their journey. Technology played a crucial role in Summer's car accident, with her Apple Watch automatically calling 911 and alerting her emergency contacts.The support and care from family, friends, and coworkers were instrumental in helping Summer through the aftermath of the accident.Summer's experience highlights the importance of valuing oneself and advocating for accommodations in the workplace and she shares her favorite hypermobility hack. 
Chapters ➡

00:00 Introduction and Background
08:01 Supportive Coworkers and Accommodations
16:01 Benefits of Remote Work
32:09 The Impact of Ehlers-Danlos Syndrome on Treatment Approach
42:25 Hope for the Future: Advances in Awareness, Treatment, and Cure
49:39 The Role of Technology in a Car Accident
56:11 The Support System: Family, Friends, and Coworkers
01:06:31 Valuing Oneself and Advocating in the Workplace

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/.      

YOUR bendy body is our highest priority! 🧬🔬🦓

Resources:  

Learn more about Summer Dashe
https://www.summerdashe.com/

#SummerDashe #dysautonomia #ChronicIllness #POTsie #POTSAwareness #ZebraWarriors #ZebraStrong #POTS #EhlersDanlos #Podcast 
#BendyBodiesPodcast #BendyBuddy #HypermobilityMD 

Summary

Dr. Tania Dempsey discusses mast cell activation syndrome (MCAS) with a focus on environmental triggers of mast cell disease.  

Takeaways
Infections can trigger mast cell reactions and people with MCAS may react differently than those without.Identifying and addressing environmental triggers, such as mold and plastics, is important in managing MCAS. Immunotherapy for allergies and asthma may impact MCAS symptoms. Treatment options like Xolair (Omalizumab), ketotifen, cromolyn, and low dose naltrexone (LDN) are discussed.  Nutrition, particularly protein intake, supports overall health and affects MCAS symptoms.Fish can be a good source of protein, but it is important to be aware of mercury levels and choose smaller fish.Testing mercury levels can help identify potential toxicity and guide treatment.Antihistamines can be beneficial for managing MCAS symptoms and should not be feared.Individuals with MCAS may have sensitivities to scents, environmental triggers, and EMFs.Finding healthcare providers who understand and can effectively treat MCAS is crucial.
Chapters ➡

00:00 Introduction to MCAS and Dr. Tanya Dempsey
02:28 Infections and MCAS
14:31 Immune Deficiency and Infections
28:37 Environmental Triggers
37:00 Air Purification and Food Quality
42:01 Quality of Meat vs. Pesticide-Free Vegetables
43:11 Fish as an Alternative to Meat
44:32 Toxins in Fish and Mercury Levels
46:02 Detoxing Mercury and Sushi Concerns
47:08 Reactions to Sushi and Scombroid Food Poisoning
48:43 Sensitivity to Scents and Environmental Triggers
49:30 Long-Term Antihistamine Use and Dementia
52:21 Reactions to Laundry and Facial Products
56:23 Treatment Options after Failing Xolair
57:12 Food Dyes and MCAS
58:18 EMFs and MCAS
59:22 Why Some Doctors Fail to Believe in MCAS
01:03:41 Immunotherapy for Allergies and MCAS
01:04:56 Managing Heat, Sun, and Exercise Triggers
01:09:54 Diagnosing MCAS and Lab Testing Challenges
01:11:20 Final Thoughts and Finding Answers

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/.      

YOUR bendy body is our highest priority! 🧬🔬🦓

Resources:

Learn about Dr. Tania Dempsey, MD:

Website: https://www.drtaniadempsey.com/
Twitter Link: https://twitter.com/drtaniadempsey
Instagram Link: https://www.instagram.com/drtaniadempseymd/
Facebook Link: https://www.facebook.com/taniadempseymd/
Linkedin Link: https://www.linkedin.com/in/tania-dempsey-m-d-82834a44

Mast Cell Matters Podcast

https://podcasts.apple.com/us/podcast/mast-cell-matters-deep-dives-on-mcas-with-tania/id1717106678

Article:  Learned Cautions Regarding Antibody Testing in MCAS 

https://pubmed.ncbi.nlm.nih.gov/37566881/

Article: Diagnosis of mast cell activation syndrome: a global "consensus-2
https://pubmed.ncbi.nlm.nih.gov/32324159/

Article: Molecular Mechanisms of Scombroid Food Poisoning
https://pubmed.ncbi.nlm.nih.gov/36614252/

Supportive Oligonucleotide Therapy (SOT) as a Potential Treatment for Viral Infections and Lyme Disease: Preliminary Results
https://pubmed.ncbi.nlm.nih.gov/36412742/
Efficacy of Double-Dose Dapsone Combination Therapy in the Treatment of Chronic Lyme Disease/Post-Treatment Lyme Disease Syndrome (PTLDS) and Associated Co-infections: A Report of Three Cases and Retrospective Chart Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7690415/

#MCAS #MastCell #MastCellActivationSyndrome #MastCellActivationDisorder #MastCellDisease 
#EDSAwarenessMonth #HSDAwarenessMonth
#Podcast #BendyBodiesPodcast #BendyBuddy #BendyBodies #HypermobilityMD

In this special “EDS Awareness Month” episode of the Bendy Bodies Podcast, founder Dr. Linda Bluestein and guest host Kate Colbert discuss how everyone can learn to spot the signs of
Ehlers-Danlos Syndromes.

Dr. Bluestein emphasizes the importance of EDS awareness, as many people are still not getting the evaluations and care they need.  She also debunks several myths about EDS, including the misconception that EDS does not cause pain and that only geneticists can diagnose it. She emphasizes the importance of early intervention and appropriate treatment for better patient outcomes. 

They cover the importance of understanding Mast Cell Activation Syndrome (MCAS), the challenges faced by individuals with EDS in their relationships, and how to communicate with romantic partners and family members. 

Colbert and Dr. Bluestein also discuss the impact of EDS in the workplace and provide tips for employers and coworkers to support individuals with EDS. The conversation emphasizes the need for awareness, empathy, and support for individuals with EDS and other poorly recognized conditions.

Takeaways

EDS Awareness Month is an opportunity to educate and spread awareness about Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD), and associated conditions.Healthcare professionals should listen to their patients and believe them, even if a clear diagnosis is not yet established.Teachers, daycare providers, and nannies can play a crucial role in identifying hypermobility conditions in children. Coaches and athletic instructors should be aware of the signs of EDS in athletes and dancers and provide resources for further evaluation and support.Several myths about EDS, such as the misconception that EDS does not cause pain and that only geneticists can diagnose it, should be debunked.Early intervention and appropriate treatment are crucial for better patient outcomes. Mast Cell Activation Syndrome (MCAS) is an important condition to consider in individuals with environmental sensitivities, even if their tryptase levels are not elevated.Understanding and empathy are crucial in relationships where a partner has EDS or HSD, as the condition can cause dynamic disability and varying needs.Communication is key in relationships, and using mirroring techniques and talking boundaries can help improve understanding and compassion.Employers and coworkers should show support and offer accommodations to individuals with EDS, such as checking in with them, providing grace, and making the workplace more accessible.Increasing awareness about EDS and related conditions is essential to foster empathy, support, and better partnerships in healthcare, workplaces, and society.
Chapters ➡

00:00 Introduction and EDS Awareness Month
09:30 Identifying Hypermobility Conditions in Children
31:06 Early Intervention and Appropriate Treatment
42:04 Supporting Individuals with EDS in the Workplace
54:59 The Importance of Awareness and Empathy for EDS and Related Conditions

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/.      

YOUR bendy body is our highest priority! 🧬🔬🦓

Resources:

https://www.ehlers-danlos.com/

https://iadms.org/

https://www.edsguardians.org/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10328215/

https://pubmed.ncbi.nlm.nih.gov/34524722/

#EDSAwarenessMonth #EDSAwareness #EhlersDanlosMyths #HSD #MCAS 
#Hypermobility #Podcast #BendyBodiesPodcast #BendyBuddy #HypermobilityMD  

In this episode, Dr. Chelsea Pierotti discusses coping with dance injuries and transitions, both from a physical and psychological perspective. She explains that the way dancers appraise their injuries and their emotional response to them can greatly impact their coping mechanisms. Dr. Pierotti emphasizes the importance of shifting the mindset from seeing an injury as a disaster to viewing it as a challenge that can be overcome. She also highlights the role of social support in the recovery process and the need for dancers to define success in ways that are within their control. Additionally, Dr. Pierotti addresses the challenges dancers face when transitioning between different forms of dance or when they have to give up dancing altogether. When transitioning out of dance, it is important to consider your values and what truly matters to you in life. This will help guide your future goals and decisions. It is also helpful to reflect on who you admire and what you admire about them, as this can highlight your own values. Grief and loss are common when leaving a dance career, and it is important to acknowledge and process these emotions. The dance world can be more supportive by adopting a positive coaching approach and focusing on the whole athlete, not just their performance. Developing mental skills and self-awareness is crucial for dancers and can be beneficial for everyone.

Takeaways

The way dancers appraise their injuries and their emotional response to them can greatly impact their coping mechanisms.Shifting the mindset from seeing an injury as a disaster to viewing it as a challenge can help dancers overcome the emotional and psychological challenges of injury.Social support plays a crucial role in the recovery process for dancers.Dancers should define success in ways that are within their control, rather than relying solely on external validation.Transitions between different forms of dance or giving up dancing altogether can be challenging, and it's important for dancers to have a strong sense of identity beyond being a dancer. Consider your values and what truly matters to you in life when transitioning out of dance.Reflect on who you admire and what you admire about them to identify your own values.Acknowledge and process the grief and loss that comes with leaving a dance career.The dance world can be more supportive by adopting a positive coaching approach and focusing on the whole athlete.Developing mental skills and self-awareness is crucial for dancers and beneficial for everyone.
Chapters ➡

00:00 Introduction
00:54 Introducing Dr. Chelsea Pierotti
01:13 Coping with Injuries
03:38 Coping Mechanisms
06:34 The Influence of Childhood Experiences
08:29 Developing Resilience
09:48 Transitioning from Dance
12:11 The Role of Pain
13:09 Challenges Faced by Hypermobile Dancers
13:23 Supporting Dancers through Challenges
17:49 The Importance of Social Support
18:43 Grief and Loss of a Dance Career
20:34 Developing Resilience and Coping Strategies
24:57 The Importance of Values
27:52 Shifting the Dance Culture
29:25 Coping with Career Shifts
33:22 Positive Coaching Approach
35:55 Developing Mental Skills
36:51 Applying Mental Skills to Life
37:24 The Importance of Self-Awareness in Dance
38:25 Mindset: Controlling the Controllables

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/.      

YOUR bendy body is our highest priority! 🧬🔬🦓
Learn about Dr. Pierotti:

https://chelseapierotti.com

https://instagram.com/dr.chelsea.pierotti 

#Dancers #Dance #Injuries #Transitions #Grief #MentalSkills 
#Hypermobility #Podcast #B

Dr. Heather Tick, a renowned pain expert, discusses non-drug therapies for pain relief; applying the principles of integrative medicine for comprehensive pain care. She emphasizes the need for education and understanding of pain neuroscience to empower patients. Dr. Tick also highlights the significance of nutrition in reducing chronic pain and inflammation. Additionally, she explores various modalities, such as acupuncture and manual therapies, as effective strategies for pain relief. Dr. Heather Tick discusses the impact of habits on movement and the importance of developing healthy movement practices. She also explores various modalities for pain relief, including heat, cold, Epsom salt baths, and movement therapies like yoga and Tai Chi. Dr. Tick emphasizes the role of mast cells in the stress response and the importance of managing diet to reduce mast cell activation. She discusses the effectiveness of laser therapy, ozone injections, and shockwave therapy for pain management. Dr. Tick also addresses the overprescription of medications and the potential benefits of supplements. She provides insights into the appropriate use of interventional pain management and the risks associated with steroid injections. Finally, she discusses the challenges of determining the expertise of medical professionals and the need for caution when considering regenerative medicine.

Takeaways

Integrative medicine takes a holistic approach to health, focusing on achieving overall well-being rather than just managing symptoms.Pain management should involve a comprehensive care plan that includes movement, education, nutrition, sleep, psychosocial support, modalities, medications, and supplements.Understanding pain neuroscience can help patients reframe their perception of pain and explore non-pharmacological strategies for pain relief.Nutrition plays a crucial role in reducing chronic pain and inflammation, and a whole-food, plant-based diet is recommended.Modalities such as acupuncture and manual therapies can provide effective pain relief and should be considered as part of a comprehensive pain management plan. Developing healthy movement habits is crucial for optimal movement.Heat, cold, Epsom salt baths, and movement therapies like yoga and Tai Chi can provide pain relief.Managing diet and reducing mast cell activation can help alleviate stress response.Laser therapy, ozone injections, and shockwave therapy may be effective for pain management.Caution is needed when considering the use of medications and supplements.Interventional pain management should be approached with strict criteria and careful consideration.Regenerative medicine shows promise but requires further research and careful selection of providers.
Chapters ➡

00:00 Introduction to Dr. Heather Tick
02:05 Understanding Integrative Medicine
07:41 Redefining Pain Management
10:31 The Importance of Education in Pain Care
12:58 The Role of Nutrition in Pain Relief
21:53 Exploring Different Modalities for Pain Relief
53:56 Impact of Habits on Movement
55:11 Benefits of Tai Chi
56:34 Connective Tissue and Movement
57:37 Role of Mast Cells in Stress Response
58:10 Effectiveness of Laser Therapy
01:00:35 Usefulness of Ozone Injections
01:02:03 Effectiveness of Shockwave Therapy
01:03:13 Overprescribed and Underutilized Medications
01:03:44 Importance of Stopping Medications
01:04:32 Impact of Proton Pump Inhibitors
01:05:37 Role of Gut in Producing Neurotransmitters
01:06:34 Importance of B Vitamins and Coenzyme Q10
01:17:26 Evaluation of Interventional Pain Management
01:19:16 Risks of Steroid Injections
01:21:26 Appropriate Use of Regenerative Medicine
01:25:30 Determining the Expertise of Medical Professionals
01:31:28 Differentiating Flares from New Problems
01:33:48 Challenges of IV Infusions and Regenerative Medicine

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