Caring Medical Center

What This Page Is and Isn’t

This page offers a plain-language explanation of Hypermobile Ehlers-Danlos Syndrome (hEDS), along with what I learned from living in a body shaped by it long before I knew its name. In my case, hEDS was the last diagnosis to arrive, confirmed six weeks after my occipital fusion surgery, and the one that explained why everything else was happening at once. Craniocervical Instability (CCI), Chiari Malformation, and Tethered Cord Syndrome (TCS) had all been identified first.

Structures that were supposed to hold were not holding. The ligaments were too loose to do their job. The body had been compensating for that for years.

At the same appointment, I was also diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). The immune and autonomic systems were part of the same failure.

hEDS is also more common than most people realize, and more often missed than found. The symptoms reach across every specialty. Each one tends to get addressed in isolation, and the connective tissue disorder underneath rarely gets named. Many people living with hEDS right now do not know it yet.

What I share here comes from lived experience, a path I can point to because I walked it. This is not medical advice and does not replace consultation with a qualified healthcare professional.

What Is Hypermobile Ehlers-Danlos Syndrome?

Hypermobile Ehlers-Danlos Syndrome is a connective tissue disorder. Connective tissue is what holds the body together. When that support is weaker than it should be, joints can move too much, tissues become more fragile, and the body spends years compensating for a job it was never built to do. Common features of hEDS include generalized joint hypermobility, joint instability, chronic musculoskeletal pain, and soft skin that may bruise easily.

There is no genetic test for hEDS. The diagnosis is clinical, which means it depends entirely on what the clinician knows to look for. It is made using the diagnostic criteria, along with a detailed history, physical examination, and the exclusion of other conditions that can also cause hypermobility. Joint hypermobility is often assessed using the Beighton score, but that score is not enough. Symptomatic hypermobility may meet criteria for hEDS or fall under hypermobility spectrum disorder (HSD) instead. The distinction matters for how it is approached.

By the time I met with the surgical team in New York City, three structural diagnoses were already on the table. The TCS findings had made the connective tissue theory harder to dismiss, but I was still doubtful. When the neurosurgeon raised the possibility of hEDS, I told him I wasn’t a Cirque du Soleil person.

He didn’t argue. Instead, he explained that Cirque du Soleil represents the far end of the spectrum. You don’t have to be there to have the underlying connective tissue problem. People in the middle range experience real consequences too.

Then he asked me to place my hand flat on the table and pulled my pinky back toward me. Did it hurt? It didn’t. He pushed further. Still no pain. Next he showed me his own finger in the same position, and how little it moved by comparison.

He was looking at connective tissue that wasn’t doing its job in joints I had never thought to question.

Why It Gets Missed

People are often told they are simply flexible, or double-jointed. Symptoms get treated one at a time. A painful shoulder. A sprained ankle. A jaw that clicks. Headaches. Fatigue. Digestive problems. Pelvic floor problems. Dizziness.

Seen separately, each of these looks ordinary. The pattern only becomes clear when someone looks at all of it at once. The overlap with hypermobility spectrum disorder and other conditions can make that more difficult to recognize.

It can also be missed because the body adapts for a long time. Muscles brace to stabilize loose joints. People develop workarounds. They avoid certain positions, live with pain, shorten the story, and keep moving forward.

By the time everything is visible, the symptoms often involve far more than joints. hEDS and HSD are associated with fatigue, headaches, autonomic symptoms, and gastrointestinal complaints.

In my case, POTS and MCAS were diagnosed at the same time as hEDS, six weeks after surgery. Looking back, the signs had been there for years. Standing up too fast and seeing stars. My mother told me that was normal, that I just needed to slow down. I believed her. I told my own daughters the same thing.

Questions I Found Myself Asking

What does hEDS feel like?

Am I just flexible, or is something actually wrong?

Why do my joints move more than they should?

Why am I always getting hurt doing normal things?

Can hEDS cause chronic pain and fatigue?

Why do I bruise so easily?

Can hEDS affect the neck and make other diagnoses more likely?

Can hEDS cause dizziness or rapid heart rate?

Can hEDS affect digestion or the pelvic floor?

How is hEDS diagnosed if there is no genetic test?

What is the Beighton score?

Is hEDS the same as hypermobility spectrum disorder?

Symptoms People Commonly Describe

Joints that move too far, slip, or dislocate. Pain that starts in one place and spreads. Muscles that stay tight because they are trying to stabilize what the ligaments cannot. Skin that is soft, sometimes stretchy, and bruises more easily than it should. Fatigue that does not match the day. Headaches. Jaw pain. A body that needs more recovery than the day should warrant.

Clinicians usually look for the core features: joint hypermobility, instability, chronic pain, and changes in the skin. But for some people the symptoms extend further: dizziness, lightheadedness, and a racing heart that may later be recognized as POTS. Repeated allergic-type episodes that may eventually be discussed as MCAS. Pelvic support issues such as prolapse.

Connective tissue exists everywhere in the body. Sometimes the symptoms show up everywhere too.

Not everyone experiences all of these, and this list is not exhaustive. The combination and severity vary widely. What makes hEDS difficult to pin down is the way symptoms move across specialties. The same body may pass through orthopedics, neurology, cardiology, gastroenterology, gynecology, physical therapy, and pain management before anyone recognizes the connective tissue underneath it.

What I Wish I’d Known

As a child I was a ballerina. I could do the splits every way there was to do them, including up the wall. I assumed that was the result of training. And some of it probably was. What I didn’t know was that the body I brought to the barre was already built differently than most.

Looking back, the signs were there from the beginning. I was born with club feet, a condition where one or both feet turn inward at birth. In some cases it may be associated with connective tissue differences, though no one mentioned that to my parents at the time.

Both my feet turned inward. As a baby I wore shoes attached to a bar, a device used to hold the feet in the corrected position after treatment. That’s how I learned to crawl, dragging the weight of the bar behind me. When I started walking, I graduated to orthopedic leather shoes. I wore them through elementary school, longing for tennis shoes and pretty sandals like every other kid was wearing. I didn’t get to wear them until fourth grade.

Later came other things that never seemed connected. Bruises I couldn’t account for. A jaw that would dislocate at the dentist. A shoulder that would slip out if I slept wrong. Tailbone problems that began with pregnancy and never fully resolved. A hip that pops when I lift my left leg. Temporomandibular joint (TMJ) issues that sent me to specialist after specialist before anyone looked at the connective tissue underneath.

I thought these were separate things. They were the same story told in different parts of my body at different times.

I wish someone had told me that when joints move more than they should, the muscles step in to stabilize them. And when the muscles compensate long enough, the body can start to break down in ways that look like a dozen different problems instead of one.

I also wish someone had told me about the fatigue. Not the kind that comes from a long day or a bad night of sleep. This is different. A heaviness that doesn’t match the day.

My muscles were doing work they were never meant to do. When the ligaments aren’t holding joints the way they should, the muscles step in to stabilize the skeleton instead. They stay active all the time, quietly bracing and compensating. Over years, that constant effort catches up with you.

At the time I thought I was just tired. Now I know my body had been working constantly just to hold itself together.

hEDS was the last diagnosis I received. In some ways it was the first thing that was true.

What I Did Next

The surgery came before the diagnosis.

My surgical team was confident I had a connective tissue disorder. It was visible in the instability, the pattern across multiple areas, and the way my body had behaved over years. But the formal diagnosis didn’t come until six weeks after my fusion and decompression, when I saw a physician who specializes in complex conditions including hEDS, POTS, and MCAS.

The surgery fixed what had collapsed. The hEDS diagnosis explained why it collapsed at all.

Managing hEDS starts with knowing you have it. I work with my specialist regularly and take precautions to protect my joints in ways I never thought about before the diagnosis.

At the dentist, I let them know about my condition before the appointment starts. Every fifteen minutes I get a break. That one accommodation has changed every dental visit since.

The connective tissue disorder doesn’t go away after surgery. Knowing it’s there changes how you move through the world, and who you tell before they start working on your body.

For the full account of what the surgery and recovery looked like see: Occipital to C3 Fusion with Chiari Decompression: A Patient's Perspective.

Often Discussed Alongside

Hypermobile Ehlers-Danlos Syndrome is frequently seen alongside other conditions, and many patients receive multiple related diagnoses:

Craniocervical Instability (CCI)

Chiari Malformation

Tethered Cord Syndrome (TCS)

Postural Orthostatic Tachycardia Syndrome (POTS)

Mast Cell Activation Syndrome (MCAS)