Hypermobile Ehlers-Danlos syndrome
hEDS, hypermobility spectrum disorder
Chronic conditionAn inherited condition of connective tissue that makes joints unusually loose. It can cause joint pain, sprains, and dislocations, and it often comes with other symptoms.
Medical Disclaimer
For education only — this guide can't diagnose you. If these signs sound familiar, talk with a healthcare provider. Book a consult
What happens
Connective tissue holds joints, skin, and blood vessels together. In hypermobile Ehlers-Danlos syndrome (hEDS), it's more stretchy than usual, so joints move past their normal range and can slip or dislocate. Doctors diagnose it with the 2017 criteria. These include a Beighton score of joint flexibility, other body features, family history, and ruling out other conditions. Unlike other types of EDS, there's no genetic test for hEDS yet. People with loose joints who don't meet all the criteria may have hypermobility spectrum disorder, which is managed the same way. POTS, digestive problems, and anxiety are common alongside hEDS.
Who gets it
hEDS runs in families and is diagnosed much more often in women. Symptoms often get worse during puberty and can shift with your cycle, pregnancy, and menopause. Many women are diagnosed only after years of joint pain.
Signs worth getting checked
- Joints that bend further than usual
- Frequent sprains, or joints that slip out of place
- Joint and muscle pain that's often widespread
- Soft, stretchy skin that bruises easily
- Fatigue
- Dizziness or a racing heart when standing
- Bloating, reflux, or constipation
Labs to ask about
- Beighton score and a full exam using the 2017 criteria
- Genetic testing if features suggest another EDS type, such as vascular or classical EDS
- Echocardiogram in some people to check the heart valves and aorta
- Active stand test if you feel dizzy or faint when standing
- Vitamin D, CBC, and ferritin to look for other causes of fatigue and pain
Treatments your doctor may discuss
- Physical therapy focused on strengthening and joint stability, with slow progress
- Braces, splints, or taping for unstable joints
- Pain management, often with input from a pain specialist
- Treating related conditions, such as POTS, mast cell symptoms, and digestive problems
Supportive steps to discuss with your provider
- Look for a physical therapist who has experience with hypermobility.
- Choose low-impact activity, such as swimming, Pilates, or cycling.
- Avoid stretching that pushes your joints to their limits. Build strength instead.
- Pace your activity to avoid flares.
- Tell your doctors and dentist about hEDS before surgery or procedures.
See a doctor promptly if you have
- Sudden severe chest, back, or belly pain: call 911
- A dislocated joint that won't go back in place: go to the emergency room
- Fainting or a racing heart when standing
- Numbness, weakness, or a severe headache when upright
- Pregnancy or planning one, to discuss extra care
Related conditions
Ready to find the root cause?
Dr. Lesher is a Naturopathic Doctor who focuses on autoimmune and chronic conditions in women. Since 2020, she's helped hundreds of patients stop managing symptoms and start healing.