EDS, or Ehlers-Danlos Syndrome, is a group of inherited connective tissue disorders that affect the tissues supporting the body’s structures, including skin, ligaments, joints, muscles, blood vessels, and organs. The landmark 2017 International Classification of EDS revised the diagnostic criteria and expanded the classification to 13 EDS subtypes, with Hypermobile EDS (hEDS) being the most common. Each subtype is distinct in its genetic basis, clinical features, and management approach. Notably, hEDS remains the only subtype without a confirmed genetic marker, meaning diagnosis is based on clinical criteria. EDS is often co-diagnosed with related conditions such as Hypermobility Spectrum Disorder (HSD), Postural Orthostatic Tachycardia Syndrome (POTS), and mast cell activation syndrome (MCAS).
What are some common EDS symptoms?
- Frequent joint dislocations or ankle sprains
- Joint clicking/noises and pain
- Extreme fatigue
- Joint hypermobility
- Digestive problems
- Dizziness (especially after standing up)
What should you expect during your physical therapy evaluation?
During your first appointment with a physical therapist, you will spend time talking about all your symptoms and challenges. If necessary, your PT will also refer you to see other specialists such as a gastroenterologist, orthotist, neurologist, etc. After this initial discussion, the physical therapist will spend time evaluating all impacted joints/muscles throughout your body. The Beighton Scoring System will be administered to determine which major joints throughout your body are most impacted.
Is it safe to exercise if I have EDS?
YES! Although it might be scary to exercise at first, the number one treatment for most EDS symptoms is to work on your strength and stability! Physical therapists can help guide you through an appropriate and safe exercise progression.
2024 Updates in EDS Diagnosis and Management
The 13 EDS Subtypes (2017 Classification): The current classification includes Classical EDS (cEDS), Classical-like EDS (clEDS), Cardiac-valvular EDS (cvEDS), Vascular EDS (vEDS), Hypermobile EDS (hEDS), Arthrochalasia EDS (aEDS), Dermatosparaxis EDS (dEDS), Kyphoscoliotic EDS (kEDS), Brittle cornea syndrome (BCS), Spondylodysplastic EDS (spEDS), Musculocontractural EDS (mcEDS), Myopathic EDS (mEDS), and Periodontal EDS (pEDS). All subtypes except hEDS now have identified genetic variants. Vascular EDS (vEDS) is the most serious subtype due to the risk of arterial rupture and requires specialized medical management.
hEDS vs. Hypermobility Spectrum Disorder (HSD): The 2017 classification introduced Hypermobility Spectrum Disorder (HSD) as a new diagnostic category that overlaps significantly with hEDS. HSD encompasses patients who have joint hypermobility with associated symptoms but don’t fully meet hEDS criteria. The distinction is important because while the conditions share many clinical features and PT approaches, they differ in diagnostic criteria and — in some research — in prognosis. Many patients previously diagnosed with Hypermobile EDS or Joint Hypermobility Syndrome (JHS) may now meet criteria for either hEDS or one of the HSD subtypes.
Current Best Practices in PT for EDS and HSD: The clinical consensus on PT for EDS has matured considerably. Key principles include: (1) proprioceptive neuromuscular facilitation (PNF) and joint position sense training to compensate for reduced proprioceptive feedback from lax ligaments; (2) strength training — particularly isometric and low-load resistive exercises early, progressing to dynamic strength work — to stabilize joints that ligaments cannot adequately support; (3) activity pacing and energy conservation strategies, especially given the often significant fatigue component; (4) aquatic therapy as a valuable adjunct for reducing joint load while building functional strength; and (5) addressing secondary complications such as POTS (dizziness on standing) through pelvic and lower limb strengthening and positioning strategies. Notably, aggressive stretching is generally contraindicated or minimized in EDS, as connective tissue laxity is already excessive.
Getting Diagnosed in 2025: Diagnosis of EDS — particularly hEDS — can be a lengthy process for many patients due to limited specialist availability and variable awareness among healthcare providers. A network of EDS-knowledgeable specialists can be found through the Ehlers-Danlos Society (ehlers-danlos.com), which maintains a list of providers who have completed their EDS education program. The Ehlers-Danlos Society Beighton Score is used to quantify joint hypermobility and is part of hEDS diagnostic criteria. Genetic testing through a medical geneticist is recommended for all patients to rule out vascular EDS, which carries serious health risks if undetected.
Conclusion
Being diagnosed with any disease can be intimidating but know that there are healthcare professionals who are qualified to help. Please reach out to us at Joint Ventures if you need help managing your symptoms or if you need a consult and don’t know where to start. We are here to help you!
-Andy Fehlner, PT, DPT
