You’re Not Imagining This
If your body has always felt unpredictable, painful, or unreliable, you’re not alone. Many people with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) spend years being dismissed or misunderstood by doctors. These conditions are real, no matter how many doctors and medical providers are unaware of them. They affect connective tissue, the framework that supports your joints, skin, blood vessels, and organs. Understanding what’s happening in your body is often the first step toward relief.
Why This Might Finally Make Things Click
In this post, we’ll break down what EDS and HSD actually are, how they’re different, and why both matter. You’ll learn common signs to look for, what testing usually involves, and what the diagnostic process can realistically feel like. Knowledge brings clarity, and clarity brings power. You deserve answers that make sense.
What Are EDS and HSD?
EDS is a group of genetic connective tissue disorders that affect how collagen (and potentially other structural proteins) are formed. Collagen helps keep joints stable and tissues strong. HSD involves symptomatic joint hypermobility that doesn’t meet the strict criteria for EDS but can still cause significant pain and dysfunction. Both can deeply impact daily life. Neither is “milder” when symptoms are severe. Both also have multiple common comorbidities like POTS, MCAS, IBS, etc.
Common Signs and Symptoms
Joint hypermobility is often the most noticeable sign, but it’s rarely the only one. Many people experience chronic pain, frequent injuries, fatigue, easy bruising, or slow healing. Others may experience dizziness, digestive issues, or changes in their heart rate. Symptoms can look different from person to person. That variability is one reason these conditions are so often missed.
How Are EDS and HSD Diagnosed?
Diagnosis usually begins with a detailed medical history and physical exam. Providers generally start with the Beighton score to assess joint hypermobility. While this test is not perfect, it does provide a quick screening tool for providers to see how “bendy” someone is. *Of note, it is possible for people to have a lower Beighton score and still have HSD or EDS. If someone has hypermobility as seen during a physical exam, symptoms of joint pain or instability and there is no other cause recognized then they would meet the criteria for Hypermobility Spectrum Disorder or HSD.
With hypermobile EDS the diagnosis is based on a clinical checklist. Basically, if you get enough “points” on this checklist then you meet the criteria for hypermobile EDS. Now this test is also far from perfect. I have had many patients who were “1 point off” from meeting the criteria for hEDS. 1 of these patients even had a daughter who was formally diagnosed with hEDS. In these situations, it is important to understand that our diagnostic tests are lacking and I believe that these patients should be managed as though they did have hEDS.
***Later in 2026 the guidelines for EDS and HSD are going to be revamped so this information may change in the near future.
For certain types of EDS (e.g., classical, vascular), genetic testing may be ordered to confirm the diagnosis. Imaging and labs are often used to rule out other conditions like autoimmune diseases that can also cause chronic multijoint pain.
The process can feel long and frustrating, and that experience is valid.
What to Expect After Diagnosis
Getting a name for your symptoms can be emotional. Relief and grief often coexist. There is no single cure, but there are many ways to manage symptoms and protect your joints. Care is usually multidisciplinary and may include physical therapy, lifestyle adjustments, and symptom-specific support. Progress happens one informed step at a time.
You’re Allowed to Take Up Space Here
If you’ve been told “it’s all in your head,” please know that it’s not. Your experiences matter. Your pain is real. Learning about EDS and HSD is not about labeling yourself. It’s about finally having a framework that explains your body and helps you move forward with confidence.
Share Your Story
Were you diagnosed quickly, or did it take years to be heard? What signs do you wish someone had explained sooner? Your story could be the validation someone else needs today.
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Thank you for being part of the Bendy Club. Together, we can make a difference!
Warm regards,
The Hypermobile Solutions Team
References
Home. The Ehlers Danlos Society. https://www.ehlers-danlos.com/
What is HSD?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-hsd/
What is eds?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-eds/
Jovin, D., Atwal, P., Herman, K., Block, N., Maxwell, A. J., Mitakides, J., Maitland, A. M., Saperstein, D., Hamilton, M., Schofield, J., Koby, M., Klinge, P., McElroy, A., Bluestein, L., Chopra, P., Tishler, J., Pocinki, A. G., Varga, J., Dempsey, T., … Lane, K. (2020). Disjointed: Navigating the diagnosis and management of Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Hidden Stripes Publications, Inc.
Smith, C., & Wicks, D. (2017). Understanding Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder: (previously known as Ehlers-Danlos Syndrome Hypermobility Type & Joint Hypermobility Syndrome, respectively). Redcliff-House Publications.
Cox, C. (2022). Holding it all together when you’re Hypermobile. Journey2Joy
Afrin, L. B. (2016). Never bet against Occam: Mast cell activation disease and the modern epidemics of chronic illness and medical complexity. Sisters Media, LLC.
Freeman, K., Goldstein, D. S., & Thompson, C. R. (2025). The dysautonomia project: Understanding autonomic nervous system disorders (2nd ed.). Bardolf.
Disclaimer
This blog is for general informational purposes only and does not constitute the practice of medicine, nursing, or other professional health care services, including the giving of medical advice, and no provider/patient relationship is formed. The use of information on this blog or materials linked from this blog is at the user’s own risk. The content of this blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard or delay in obtaining medical advice for any medical condition they may have and should seek the assistance of their health care professionals for any such conditions.