These two companion guides work together: the first helps you recognize symptomatic joint hypermobility, and the second offers a practical framework for managing it. Both are written in plain language for patients and providers alike.
Symptomatic Joint Hypermobility Guide
Published January 9, 2024. © Linda Bluestein, MD, Bendy Bodies Podcast
A heritable disorder of connective tissue (HDCT), EDS (Ehlers-Danlos Syndromes) includes 14 different subtypes, with hEDS (hypermobile EDS) being by far the most common (yet it does not have known genetic markers). The clinical presentation is highly variable among people with the same EDS type and between different EDS types. Core features also include hyperextensible (stretchy) skin and tissue fragility. Patients with Hypermobility Spectrum Disorders (HSD) have symptomatic joint hypermobility but do not have another condition to explain their symptoms. Dysfunction can occur in virtually any organ or tissue.
What to Look For
"Symptoms" are what you feel. "Signs" are what you can see.
Symptoms
- Joint instability (dislocation or subluxation [partial dislocation]), including cervical instability
- Overuse / recurrent injury
- Chronic pain
- Headache (e.g., migraine)
- Jaw pain and dysfunction (i.e., TMD)
- Fatigue
- Sleep disturbance
- Gastrointestinal dysfunction (e.g., constipation, heartburn, diarrhea, nausea, vomiting)
- Orthostatic intolerance (difficulty tolerating upright posture)
- Urogenital (e.g., frequent urination, painful periods, painful intercourse)
- Mast cell disease (e.g., flushing, hives, itching, wheezing)
Signs
- Joint hypermobility (increased joint range of motion, now or in the past)
- Recurrent injury (e.g., sprains, strains)
- Soft, velvety and/or stretchy skin
- Fragile tissues (skin, bone, blood vessels, organs)
- Easy bruising
- Unexpected stretch marks
- Atrophic scarring / poor wound healing
- Hernias (e.g., abdominal, inguinal, umbilical)
- Rectal / uterine prolapse
- Dental crowding
- Eye problems (e.g., myopia, strabismus, blue sclera)
- Scoliosis
- Pectus (breastbone) deformity
- Arachnodactyly (long fingers & toes)
- Low bone density
- Flat feet
- Mitral-valve prolapse
- Neurodivergence (e.g., autism, ADHD)
- Tethered cord
- Chiari malformation
The Five-Part Questionnaire for Generalized Joint Hypermobility
- Can you now (or could you ever) place your hands flat on the floor without bending your knees?
- Can you now (or could you ever) bend your thumb to touch your forearm?
- As a child, did you amuse your friends by contorting your body into strange shapes, or could you do the splits?
- As a child or teenager, did your shoulder or kneecap dislocate on more than one occasion?
- Do you consider yourself double-jointed?
Endorsement of two or more questions suggests generalized joint hypermobility.
Comorbidities
Mast Cell Activation Syndrome (MCAS): Symptoms may include flushing, hives, itching, wheezing, chemical/drug/food intolerances, and anaphylaxis.
Dysautonomia (POTS, etc.): Symptoms may include difficulty tolerating upright posture, temperature intolerance, fast heart rate, fainting or feeling faint, brain fog, nausea, and/or vomiting.
Red Flags for Genetic Testing
Suggesting a genetically-defined type of EDS or other HDCT
- Sudden, early unexpected death (under age 40) in your family
- Organ rupture
- Extremely stretchy or fragile tissues / skin and/or translucent skin
- Club foot
- Congenital hip dislocation
- Muscle weakness or low muscle tone (hypotonia)
- Hypermobility limited to hands and feet
- Aortic or arterial aneurysms, dissection, or rupture
- Severe progressive valvular heart disease
- Pneumothorax
- Marfanoid habitus (tall / lean) and/or aortic root changes
For a fuller breakdown of red-flag features by body system, see the Red Flags in Hypermobility Disorders resource.
Hope for Hypermobility: A Practical Guide to Treatment and Daily Living
Published January 28, 2025. © Linda Bluestein, MD, Bendy Bodies Podcast
Living with hEDS or HSD presents unique challenges. This guide builds on the Symptomatic Joint Hypermobility Guide above, offering deeper insights into managing symptoms, navigating treatments, and improving daily life through an integrative approach.
The MENS PPMS Framework
Movement
- Safe exercise routines that prioritize stability and joint protection.
- Physical therapy focusing on core strength, joint stabilization, and pacing. Post-exertional malaise requires a tailored approach combined with medical management.
- Gentle practices like Pilates, Feldenkrais, the Alexander Technique, and tai chi for sustainable movement.
Education
- Learn about the physiology of joint hypermobility and its effects on the body.
- Understand pain types (nociceptive, neuropathic, and nociplastic) and how they relate to hypermobility.
- Strategies for advocating for proper care and navigating medical appointments.
Nutrition
- Anti-inflammatory, nutrient-rich foods and hydration strategies.
- Tips for managing mast cell triggers through diet, including foods to avoid and alternatives to incorporate.
- Addressing nutrient deficiencies with tailored dietary adjustments.
Sleep
- Practical sleep-hygiene tips, including the use of weighted blankets and supportive bedding.
- How to identify and address sleep apnea or insomnia.
- The role of cognitive-behavioral therapy for insomnia (CBT-I) in improving rest.
Psychosocial Factors
- Coping with anxiety, depression, and medical trauma through CBT, DBT, EMDR, The Gupta Program, and other therapeutic approaches.
- Recognizing and addressing kinesiophobia (fear of movement-related pain).
- The importance of mindfulness and self-compassion in managing chronic conditions.
Modalities
- Tools and aids like braces, orthotics, and compression garments to enhance mobility and stability.
- Alternative therapies, including vagus nerve stimulation, virtual reality, dry needling, and low-level laser therapy.
- Tips for safe use of modalities like Epsom-salt baths and kinesiology taping.
Medications & Supplements
- Overview of common medications like low-dose naltrexone and gabapentinoids. (See the Low-Dose Naltrexone guide.)
- Precautions and strategies for pharmacogenomic testing to tailor treatments.
- The role of supplements like vitamin D, omega-3s, magnesium, quercetin, and vitamin C in symptom management.
Tailored Physical Therapy Approaches
- Stabilization exercises: Building core strength and protecting vulnerable joints.
- Pelvic floor therapy: Improving core stability and supporting the function of pelvic organs (bladder, bowel, sex organs).
- Pain management: Techniques for minimizing discomfort during physical activity.