hEDS & HSD Undiagnosed: Signs and Symptoms That Are Often Hiding in Plain Sight
Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) are frequently misunderstood, underrecognized, or misdiagnosed. Not because the symptoms are invisible—but because they’re often misattributed, minimized, or seen through the lens of more familiar (but inaccurate) diagnoses.
For many people, the path to diagnosis spans years or even decades. During that time, they may be told their symptoms are caused by stress, depression, anxiety, or growing pains—when in reality, those symptoms have been signs of a connective tissue disorder all along.
Why Are hEDS and HSD So Commonly Missed?
Many providers are still unfamiliar with the broad, multi-systemic nature of hEDS and HSD. Symptoms may not appear dramatic on the surface, or they may overlap with other conditions like fibromyalgia, irritable bowel syndrome (IBS), anxiety, or chronic fatigue syndrome.
As a result, people are often passed from one specialist to another without anyone connecting the dots.
Signs and Symptoms That Often Get Overlooked
Below are some of the most common signs and symptoms of hEDS and HSD that are often hiding in plain sight—and what they’re frequently mistaken for.
Ongoing Fatigue
What it might be misattributed to: Depression, burnout, poor sleep habits, overexertion, or laziness.
What may actually be happening: Your body is working overtime to stabilize unstable joints, manage pain, and compensate for systemic dysregulation—leading to chronic, unrelenting fatigue.
Chronic Pain
What it might be misattributed to: Fibromyalgia, “teenage growing pains”, overuse injuries, attention-seeking behavior, or “doctor shopping”.
What may actually be happening: Pain from joint instability, subluxations, muscular overcompensation, and inflammation is real and mechanical. It often starts in childhood or adolescence and evolves over time.
Gastrointestinal (GI) Issues
What it might be misattributed to: IBS, food sensitivities, “just anxiety”, or functional abdominal pain.
What may actually be happening: hEDS and HSD can affect the GI tract due to connective tissue laxity, impaired motility, dysautonomia, and associated conditions like mast cell activation syndrome (MCAS). Nausea, bloating, reflux, and constipation are common but often dismissed.
Dysautonomia
What it might be misattributed to: Anxiety or panic attacks, migraine or tension headache disorder, deconditioning, or being out of shape.
What may actually be happening: Feeling on-edge, anxiety, headache, exercise intolerance, heat intolerance, and fatigue may be signs of dysautonomia or postural orthostatic tachycardia syndrome (POTS), a form of autonomic nervous system dysfunction commonly seen in people with hEDS/HSD.
Mast Cell Activation Syndrome (MCAS)-Like Symptoms
What it might be misattributed to: Food intolerances, skin rashes or eczema, allergic rhinitis or seasonal allergies, GI reactivity, anxiety, or depression.
What may actually be happening: MCAS can cause systemic, allergic-type reactions without true IgE allergies. Flushing, hives, GI issues, fatigue, panic-like symptoms, and low mood may occur in response to triggers like foods, heat, chemicals, or stress.
There’s Often a Pattern—Even If It Looks Different for Everyone
Although no two people with hEDS or HSD experience the exact same symptoms, there are patterns that emerge:
A mix of musculoskeletal pain and systemic symptoms
Frequent misdiagnoses
Symptoms that worsen during hormonal changes, stress, or after illness
A family history of joint hypermobility, chronic pain, or vague multi-system issues
Early Recognition Matters
Every missed diagnosis is a missed opportunity for early intervention. Every misattribution delays appropriate care and support.
The more awareness we build about how hEDS and HSD can present, the faster people can be validated and treated—and the fewer will be told their symptoms are “just in [their] head.”
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Disclaimer: This blog post is for informational purposes only and shall not be construed as behavioral health or medical advice. It is not intended or implied to supplement or replace treatment, advice, and/or diagnosis from your own qualified healthcare provider.