hEDS and HSD Undiagnosed: Signs and Symptoms That Are Often Hiding in Plain Sight

Many people with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) are undiagnosed or misdiagnosed for years or even decades—not because their symptoms are invisible, but because they’re misunderstood or simply ignored.

As a clinician, I’ve seen each one of these misattributions…and unfortunately, many more:

Ongoing Fatigue

Can be misattributed to depression, burnout, poor sleep hygiene, or overexertion

Pain

Can be misattributed to fibromyalgia, stress, growing pains, overuse injuries, “attention-seeking,” or “doctor shopping”

Gastrointestinal (GI) Problems

Common but often not linked to hEDS/HSD early on

Dysautonomia (including POTS/Postural Orthostatic Tachycardia Syndrome) Symptoms

Can be blamed on anxiety or panic attacks, “normal” teenage symptoms, headache disorders, or being “out of shape”

Mast Cell Activation Syndrome (MCAS) Symptoms

Can be misattributed to food allergies or intolerances, skin conditions, gastrointestinal problems, or seasonal allergies

Symptoms of hEDS and HSD and concerns that often occur alongside these conditions (POTS or MCAS) can differ for everyone, but they often have a pattern, and they deserve proper recognition. The more this happens, the sooner people can get the care they need.

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.