Symptoms of hEDS
This article outlines the broad range of symptoms commonly experienced by individuals with hypermobile Ehlers-Danlos syndrome (hEDS), the most common form of EDS. The symptom profile reflects connective tissue fragility affecting multiple organ systems, including joints, skin, autonomic function, gastrointestinal tract, neuropsychiatric health, and more. Not everyone who has hEDS will experience all of the following symptoms.
Joint Hypermobility and Instability
Generalized joint hypermobility is a hallmark feature, either currently or in the past
Frequent joint instability with recurrent subluxations (partial dislocations) and full dislocations
Chronic musculoskeletal pain, often neuropathic (nerve-related) and distinct from acute injury pain.
Early-onset osteoarthritis and joint stiffness
Structural abnormalities such as flat feet
Marfanoid body habitus (a tall, slender build with long limbs and fingers) may be observed, although it is not diagnostic of hEDS
Torus palatinus (bony growth on the hard palate) and mandibular tori (bony growths inside the lower jaw) are reported more frequently in hEDS, likely reflecting connective tissue and bone remodeling abnormalities
Muscle weakness and low muscle tone (hypotonia) are especially common in children, often leading to motor delays or poor muscle endurance in adults
Motor coordination difficulties may occur due to poor joint stability and proprioceptive dysfunction
Proprioceptive and Coordination Issues
Impaired proprioception, the body’s ability to sense its position in space, can lead to clumsiness, difficulty with balance, and frequent injury
Difficulty with fine motor skills, frequent bumping into objects, or poor coordination may be observed
Vestibular dysfunction, which affects balance and spatial orientation, may contribute to dizziness or motion sensitivity
Skin Features
Soft, velvety, and hyperextensible (stretchy) skin
Easy bruising and fragile skin that heals slowly
Atrophic scars, which are thin, papery, and prone to reopening
Increased nail fragility, including brittle or easily broken nails, possibly due to collagen and keratin abnormalities
Vascular fragility, or delicate blood vessels, can lead to hematomas (deep bruising), prolonged bleeding, or visible vein patterns under the skin
Autonomic and Cardiovascular Symptoms
Dysautonomia, or dysfunction of the autonomic nervous system, is common. It often presents as Postural Orthostatic Tachycardia Syndrome (POTS), where heart rate increases excessively upon standing
Symptoms of autonomic dysfunction may include dizziness, lightheadedness, fatigue, palpitations, heat intolerance, and shakiness
Some individuals experience fainting or near-fainting episodes when upright for too long
Mild structural heart changes such as mitral valve prolapse or aortic root dilation may occur but are rarely dangerous in hEDS
Mast cell activation symptoms, such as flushing, itching, and sensitivity to foods or medications, are reported in some individuals and may overlap with allergic-like reactions
Gastrointestinal and Pelvic Organ Issues
High rates of functional gastrointestinal disorders such as Irritable Bowel Syndrome (IBS), gastroparesis (delayed stomach emptying), Small Intestinal Bacterial Overgrowth (SIBO), and gastroesophageal reflux disease (GERD).
More severe dysmotility (abnormal movement of the digestive tract) is also reported in some individuals, affecting swallowing, digestion, and elimination.
Abdominal hernias and pelvic organ prolapse (when organs like the bladder or uterus shift out of place) are more common due to weak connective tissues.
Urogynecologic symptoms include menstrual cramps (dysmenorrhea), urinary incontinence, frequent urination, urgency, or a sensation of incomplete bladder emptying.
Some individuals are diagnosed with interstitial cystitis, a painful bladder condition not caused by infection.
Neuropsychiatric and Other Systemic Symptoms
Anxiety, depression, and other mood disorders are common and may be reactive (due to living with chronic illness), biological, or both.
Many individuals report chronic fatigue that is not relieved by rest.
Brain fog, or cognitive dysfunction, includes difficulty concentrating, short-term memory lapses, and slowed mental processing.
Sleep disturbances are common and include insomnia, non-restorative sleep, and in some cases sleep apnea or other forms of sleep-disordered breathing.
Frequent migraines and other headaches, including cervicogenic (neck-related) headaches, are reported.
Post-exertional malaise, or a worsening of symptoms after physical or mental activity, may occur.
Some individuals describe traits consistent with neurodivergence, such as ADHD-like symptoms or sensory sensitivities (though research is still emerging in this area).
Sensory and Environmental Sensitivities
Heightened sensitivity to light, sound, smell, temperature, and touch is frequently reported.
Clothing tags, loud environments, or temperature fluctuations may cause discomfort or distress.
Some individuals also experience chemical sensitivities, often overlapping with mast cell activation symptoms.
Dental and Craniofacial Symptoms
Dental crowding, palate abnormalities, and orthodontic issues are more common.
Temporomandibular joint (TMJ) dysfunction causes jaw clicking, locking, or pain.
Dental enamel defects may increase the risk of cavities and tooth sensitivity.
Respiratory and Neurological Findings
Some individuals report asthma-like symptoms or chronic nasal congestion.
Chiari malformation, a structural brain abnormality where the lower part of the brain extends into the spinal canal, may occur and cause headaches, dizziness, and neurological symptoms.
Rarely, spontaneous pneumothorax (lung collapse) has been reported.
Immune, Hormonal, and Endocrine Irregularities
Many people with hEDS report symptoms suggestive of immune dysregulation, including frequent infections or allergy-like symptoms.
Mast cell activation syndrome (MCAS) is increasingly recognized and may cause widespread sensitivities, flushing, and gastrointestinal upset.
Hormonal irregularities, including menstrual cycle disturbances, thyroid dysfunction, and low cortisol-like symptoms, are sometimes reported.
Some individuals experience blood sugar instability despite normal diabetes screening.
Functional Impacts and Quality of Life
Reduced stamina, exercise intolerance, and chronic fatigue significantly affect daily functioning.
Individuals may need to pace activities or use mobility aids, braces, or ergonomic tools to preserve energy and prevent injury.
Despite normal imaging or lab results, many patients experience disabling symptoms that impact their ability to work, study, or maintain social activities.
These impacts often go unrecognized or are misattributed to anxiety or deconditioning, leading to delays in diagnosis and support.
Additional Less Common or Recently Recognized Symptoms
In addition to the symptoms already listed, people with hypermobile Ehlers-Danlos syndrome (hEDS) may also report several other, less common or more recently recognized symptoms, reflecting the complexity and multisystem nature of the disorder. These include
Chiari malformation and other rare neurological abnormalities
More severe gastrointestinal dysmotility, including delayed gastric emptying beyond typical IBS or GERD
Sleep apnea or other forms of sleep-disordered breathing beyond insomnia
Psychological distress, including post-traumatic stress symptoms, often linked to medical trauma or years of being disbelieved
Adverse medication reactions, often unrelated to allergies and potentially linked to connective tissue fragility or mast cell instability
Summary
Hypermobile Ehlers-Danlos syndrome (hEDS) is a complex, multisystem connective tissue disorder with hallmark features of generalized joint hypermobility, chronic musculoskeletal pain, and skin fragility. However, its impact reaches far beyond the joints, often involving the gastrointestinal system, cardiovascular regulation, immune responses, sensory processing, hormonal regulation, and neuropsychiatric health. The wide variability in symptom severity and presentation underscores the importance of individualized clinical evaluation and management. Comprehensive care often requires a multidisciplinary approach that includes symptom tracking, lifestyle adaptation, and both physical and emotional support.
