Self-screening for hEDS 

This self-screening guide outlines common signs and historical clues that may suggest hypermobile Ehlers-Danlos (hEDS) and can help you decide whether to seek further evaluation and a possible diagnosis.

Present-Day Clues (Current Symptoms)

• Joint hypermobility (double-jointedness)

  • Can you still easily bend your thumb to your wrist or hyperextend (bend beyond the normal position) your elbows/knees?

  • Can you place your hands flat on the floor without bending your knees?

• Chronic joint pain or frequent joint injuries

  • Joint pain lasting more than 3 months in multiple joints

  • Recurrent sprains, dislocations, or subluxations (joints that slide out of place)

  • Jaw pain or clicking (TMJ dysfunction) with chewing or opening your mouth wide

• Fatigue and poor stamina

  • Persistent tiredness, especially after physical activity

  • “Wired but tired” feeling; difficulty recovering after exertion

• Gastrointestinal issues

  • Bloating, constipation, reflux, nausea, or irritable bowel syndrome (IBS)-like symptoms (Abdominal pain or cramping (often relieved by having a bowel movement), bloating, gas, changes in bowel habits such as diarrhea (loose or frequent stools), constipation (infrequent or hard stools), alternating between diarrhea and constipation, urgency to have a bowel movement, feeling of incomplete evacuation)

  • Symptoms of delayed gastric emptying (food moves too slowly from the stomach into the small intestine causing bloating, nausea, vomiting, feeling full too soon, poor appetite)

  • Early satiety (feeling full after eating only a small amount of food)

• Dizziness or faintness on standing (POTS or orthostatic intolerance)

  • Lightheadedness, rapid heartbeat, or feeling faint when standing up

  • Cold hands and feet, poor temperature regulation

• Skin differences

  • Soft, velvety skin

  • Moderately stretchy skin (less prominent than in other EDS types)

  • Easy bruising or poor wound healing

  • Wide or stretched scars, or scars that look different than expected

• Poor coordination and proprioception (sense of body position and movement)

  • Clumsiness, frequent tripping, or bumping into things

  • Difficulty with balance, fine motor tasks, or sports

• Unexplained widespread pain

  • Muscle aches, tension headaches, or fibromyalgia-like symptoms (widespread pain, fatigue, sleep disturbances, cognitive difficulties ("fibro fog"), sensitivity to touch, mood changes)

  • Burning, tingling, or nerve-related discomfort (may suggest small fiber neuropathy)

• Autonomic or nervous system issues

  • Trouble regulating body temperature, digestive activity, or blood pressure

  • Fluctuating heart rate or fatigue after meals

• Vision or eye symptoms

  • Dry eyes, frequent visual strain, high myopia, or strabismus (e.g., convergence insufficiency)

  • Eye fatigue or blurry vision, especially while reading or focusing

• Pelvic or bladder issues

  • Pelvic floor dysfunction, urinary urgency, or incontinence

  • Pelvic organ prolapse, chronic pelvic pain, or pressure sensation

• Reproductive or hormonal symptoms (for females)

  • Heavy, painful periods or irregular menstrual cycles

  • Worsening of symptoms with menstruation, pregnancy, or menopause

  • History of infertility, miscarriages, or suspected endometriosis

• Neurologic or structural complications

  • Migraines or chronic headaches (especially positional headaches)

  • Possible Chiari I malformation (see separate information page), craniocervical instability, or tethered cord symptoms (lower back pain (especially with movement), leg weakness or numbness, foot deformities (e.g., high arches, clubfoot), changes in walking or balance, bladder problems (urgency, incontinence), bowel problems (constipation, incontinence), scoliosis or spinal curvature, progressive neurological symptoms in the lower body, pain or tightness in hamstrings or calves, delayed motor milestones (in children), toe-walking (in children)

  • Sensitivity or poor response to local anesthetics during dental or medical procedures

Historical Clues (Childhood and Earlier Life)

• Very flexible as a child ("Gumby" or “bendy” kid)

  • Able to do splits, backbends

  • Showed off weird joint tricks

• Delayed motor development

  • Trouble learning to walk, run, ride a bike, or poor handwriting

  • Late coordination milestones or poor sports performance

• Frequent injuries or clumsiness

  • Regularly sprained ankles, fell often, or had many stitches

  • Labeled accident-prone or physically awkward

• Growing pains that were intense or lasted long past typical age

• Dental crowding or palate issues

  • High palate; dental extractions for overcrowding

  • Difficulty with orthodontic work or requiring early braces

• Hernias or prolapse (early or recurrent)

  • Umbilical, inguinal, or abdominal hernias in childhood or early adulthood

• Flat feet or foot pain growing up

• Frequent nausea, stomach pain, or early GI complaints

• Menstrual issues

  • Heavy, painful periods, irregular cycles, or worsening symptoms around menstruation

  • Early signs of endometriosis or pelvic discomfort

Additional Risk or Clue Factors

• Family history

  • A parent, sibling, or child with similar symptoms or diagnosed with hEDS or related conditions

  • Family members with “loose joints,” chronic pain, or diagnoses like fibromyalgia or Irritable Bowel Syndrome

• Being told symptoms are “all in your head” or given multiple diagnoses without resolution

  • Repeated referrals for unexplained symptoms without clear answers

  • History of being misdiagnosed with psychosomatic illness

• Diagnosis of fibromyalgia, chronic fatigue, anxiety, or IBS before hEDS is ever considered

  • Especially when these coexist with joint symptoms, poor coordination, or autonomic dysfunction

• Unusual surgical or dental complications

  • Slow healing, wide scars, or tissue tearing during procedures

  • Poor response to local anesthesia at the dentist or during medical procedures

What To Do Next

• Check your Beighton score. This is a simple 9-point system used to assess joint hypermobility. A score of 5 or more out of 9 may indicate generalized joint hypermobility, depending on your age and history.

• Track your symptoms. Consider journaling or listing issues to share with a doctor. Include both current and past signs.

• Consult a medical provider. Ideally one familiar with connective tissue disorders, if multiple areas match you experience.