Chronic Pain, Hyperflexibility, and No Clear Answers: Hypermobile Ehlers-Danlos Syndrome (hEDS)
- Drew Flack, DC
- Jun 16
- 3 min read
What You Need to Know When the Tests Come Back Normal—But the Pain Doesn’t
Many people live with chronic body pain, fatigue, joint instability, and frequent injuries—yet every test they take comes back “normal.” If this sounds familiar, hypermobile Ehlers-Danlos Syndrome (hEDS) might be the missing diagnosis.
Unlike other conditions, hEDS does not have a definitive genetic test. According to the Ehlers-Danlos Society, it is diagnosed clinically—based on physical signs, symptoms, and medical history. Unfortunately, many healthcare providers simply lack the training to identify it.
What Is hEDS?
Hypermobile Ehlers-Danlos Syndrome is a connective tissue disorder that primarily affects joints, skin, and soft tissues. It’s part of a group of conditions under the EDS umbrella, but hEDS is the most common—and the most misunderstood.
Common Signs and Symptoms of hEDS:
Joints that are unusually flexible or “double-jointed”
Chronic joint and muscle pain, often mistaken for fibromyalgia
Frequent joint dislocations or subluxations
Feeling lightheaded, dizzy, or like you could fall asleep at any moment
Constant brain fog and difficulty concentrating
Morning stiffness and soreness, as if you’ve run a marathon in your sleep
Pain that flares from even minor triggers—a small bump, light exertion, or prolonged sitting
Extreme soreness after bumping into things
Digestive problems like bloating, diarrhea, constipation, or IBS-like symptoms
A feeling of blacking out or fainting when getting up too fast (often linked to POTS)
Fatigue, poor sleep, and a body that doesn’t seem to “bounce back”
Many patients describe the condition as feeling like their body is always on the edge of breakdown—too flexible where it shouldn’t be, too painful for no clear reason.
Why It's So Often Missed
One frustrating aspect of hEDS is the difficulty in getting a diagnosis. Unlike other conditions with clear laboratory tests, hEDS relies heavily on clinical assessments. Unfortunately, many healthcare providers lack adequate training to recognize this syndrome.
This lack of awareness can lead to a series of misdiagnoses, often causing more stress and feelings of isolation. For instance, a survey showed that nearly 70% of people with hEDS reported seeing multiple healthcare providers before receiving their diagnosis. This prolonged search can contribute to anxiety and depression.
To raise awareness of hEDS, it's essential to engage with healthcare professionals who specialize in connective tissue disorders. Keeping a detailed record of your symptoms and their changes can also provide crucial information during your diagnostic journey.
Why It's So Often Missed
Because there's no lab test or genetic marker, diagnosis depends on clinical expertise—something many providers lack. Patients are often misdiagnosed with anxiety, fibromyalgia, or simply told “nothing is wrong.”
We have advanced training and experience in identifying hEDS, even when others miss it. Our team understands the subtle but critical signs to look for, and we take the time to listen to your full story.
How We Help
We don’t just identify hEDS—we help you manage it with a custom care plan grounded in the latest research and real-world experience.
Our approach includes:
Physical therapy focused on joint stabilization using doable, low-impact exercises like pelvic tilts, wall sits, resistance band work, and scapular setting
Teaching movement strategies that protect unstable joints without overexerting them
Personalized guidance on lifestyle adaptations like finding the balance between activity and rest, when to stay off your feet, nutrition, and support devices.
Chiropractic care adapted specifically for hypermobile patients—safe, precise, and never forceful
Soft-tissue therapy, dry needling, and massage to relieve pain, calm overworked muscles, and reduce inflammation
Coordination with your other providers for a whole-body, whole-life approach
We understand the complexity of hEDS and how isolating it can be. Our team is here to help you stabilize, recover, and live better—without guessing.
Fast Facts About hEDS
hEDS is the only type of EDS without a known genetic marker
Most people are diagnosed between ages 15–40, often after years of unexplained symptoms
Symptoms can worsen after injuries, pregnancy, illness, or major stress
Many people with hEDS also experience POTS (Postural Orthostatic Tachycardia Syndrome), MCAS (Mast Cell Activation Syndrome), or other dysautonomia-related conditions
Think You Might Have hEDS?
If you’re dealing with chronic pain, unexplained fatigue, frequent injuries, and extreme flexibility, let’s talk. We can help you get clarity—and real help.
Schedule an appointment here
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