Navigating Treatment for hEDS/HSD: A Comprehensive Guide
Welcome back to our January series on hypermobility! Last time, we laid the foundation with an introduction to hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD). Now, we're diving into the next step: treatment strategies tailored to these conditions.
Dr. Linda Bluestein’s Expertise: "Hope for Hypermobility" Series
In addition to the Practical Guide, I’ve co-written two medical articles, "Hope for Hypermobility: Part 1 - An Integrative Approach to Treating Symptomatic Joint Hypermobility" and "Hope for Hypermobility: Part 2 - An Integrative Approach to Treating Symptomatic Joint Hypermobility,” providing a deeper understanding of how to manage hEDS and HSD. These peer-reviewed articles emphasize the importance of a multimodal treatment strategy and highlight specific approaches that clinicians and patients can adopt.
In Part 1, we explain:
The physiological basis of pain in joint hypermobility.
The types of diagnostic tests available to identify the source(s) of pain.
The critical need for recognizing hEDS and HSD in clinical settings to reduce misdiagnoses and delays in care.
In Part 2, we outline:
My MENS PMMS framework, which includes Movement, Education, Nutrition, Sleep, Psychosocial support, Modalities, Medications, and Supplements.
Practical applications of this framework in addressing the complex and varied symptoms associated with these conditions.
Specific interventions, including physical therapy approaches, dietary adjustments, and supplements, tailored to the unique needs of patients with hEDS/HSD.
These articles are invaluable for both patients and healthcare providers, offering a roadmap for comprehensive and effective care.
Understanding Multimodal Treatment: MENS PMMS
Building on our work, here’s a closer look at the MENS PMMS approach:
Movement: Physical therapy tailored to stability and joint protection is crucial. Specialized therapies, like pelvic floor physical therapy or techniques like Feldenkrais or Pilates, can build strength and improve daily function. Start low and progress slowly - even with young, healthy appearing patients!
Education: Understanding your body and pain mechanisms empowers you to manage symptoms and advocate for your care.
Nutrition: Anti-inflammatory foods, hydration, and identifying food sensitivities (e.g., histamine intolerance for those with mast cell issues) play a key role. Focus on including key nutrients rather than on excluding foods to build stronger tissues. Seek expert assistance whenever possible, especially with any history of disordered eating.
Sleep: Addressing sleep disturbances through cognitive behavioral therapy, weighted blankets, or sleep studies can significantly improve outcomes. Obstructive sleep apnea occurs in atypical settings (e.g., young females of normal body weight).
Psychosocial Factors: Chronic conditions can take a toll on mental health. Supportive therapies like CBT or DBT, as well as mindfulness practices, help improve resilience and coping. Traumatic experiences are common in those with persistent pain and comorbidities. Addressing trauma through therapies like EMDR (Eye Movement Desensitization Retraining) and the Gupta Program can facilitate a feeling of safety in the nervous system.
Modalities and Medications: From braces and compression garments to medications and supplements, individualized tools provide additional layers of support.
Supplements: Magnesium, vitamin D, and omega-3 fatty acids are examples of supplements that can reduce inflammation and support overall health. Please note that supplements are not regulated and can have interactions with other supplements or medications. Always consult with a qualified professional before starting any supplement.
Common Comorbidities to Address
Many individuals with hEDS/HSD experience challenges like:
Pain Management: Often a mix of pain triggers requires targeted interventions [Nociceptive (from actual or potential tissue damage), neuropathic (from within the nervous system), and nociplastic (from altered nervous system processing) pain]
Autonomic Dysregulation: Conditions like POTS (postural orthostatic tachycardia syndrome) often benefit from lifestyle adjustments and graduated movement. Starting low and progressing slowly are essential.
Gastrointestinal Issues: IBS and other gut-related symptoms can often improve with tailored diets and supplements.
Mast Cell Activation Syndrome (MCAS): Identifying triggers and incorporating antihistamines or mast cell stabilizers can reduce symptoms.
Why Does it Matter?
Receiving a diagnosis of hEDS or HSD is difficult enough, but far too many healthcare professionals dismiss it, claiming it doesn't matter because treatment options are limited. This myth needs to be shattered! Is there a magic pill? No. But that doesn’t mean we should throw up our hands and give up. By looking at similar conditions and applying what we know, we can still make meaningful strides in improving quality of life for those affected. Every person deserves the chance to feel better, even if the path isn’t a quick fix.
Download Our Guide
For a deeper dive into managing hEDS/HSD, download our Symptomatic Joint Hypermobility Guide and our Hope for Hypermobility: A Practical Guide to Treatment and Daily Living . These resources include actionable insights on treatments, lifestyle adjustments, and tools to support your health journey.
Please share this guide with a friend, family member, or healthcare professional. Together, we can change the narrative so people are accurately diagnosed and provided access to treatments.
Looking Ahead
Managing hEDS and HSD is a journey, not a destination. While progress may be slow at times, each step forward—no matter how small—is meaningful. Stay tuned for more insights, tools, and resources in the coming months as we continue to explore hypermobility and its management.
Here’s to a year of learning, growth, and better health!
LAST THURSDAY: Dr. Jill Carnahan
We were thrilled to have Dr. Jill Carnahan on the podcast, where she unraveled the complex “chronic illness puzzle,” including the various layers driving mast cell activation syndrome (MCAS). She shared transformative insights into pinpointing root causes and offered a fresh perspective on emerging treatments.
THIS THURSDAY: Dr. Irwin Goldstein & Sue Goldstein
Get ready for an illuminating conversation with Dr. Irwin Goldstein and Sue Goldstein on the next episode of our podcast! They’ll dive into the latest innovations in sexual medicine, explore the realities of pelvic health, and share practical strategies for overcoming intimacy challenges. Whether you're navigating chronic pain or seeking to enhance your overall wellness, their combined expertise and compassionate approach will inspire you to take proactive steps toward better health.
Well that’s all for this week; thank you so much for reading and supporting this newsletter. Talk to you soon, Bendy Buddies!
Yours in Health,
Dr. Bluestein
Is it worth pursuing an official diagnosis? I tore my hip labrum and the orthopedist did the ten point test with me and told me that I am hypermobile. He was somewhat entertained, honestly. He said I could talk to a geneticist if I would like to. I am wondering if I would find that to be worthwhile or not.
What did you find most helpful? What would you like to see added? 🧬💜🦓