More Than Sick of Salt

All Posts in Category: Heritable Connective Tissue Disorders

Flexible Joints & Dizziness: The Hidden Link in hEDS and HSD

Click Here to Download this Blog Post – More Than Just “Bendy”: The Hidden Link Between Flexible Joints and Dizzy Spells (Part 8)

By Dr. Nicholas L. DePace, M..D., F.A.C.C – Cardiologist specializing in autonomic dysfunction, Ehlers-Danlos syndrome and POTS.

More Than Just “Bendy”: The Hidden Link Between Flexible Joints and Dizzy Spells

If you are a young woman who has spent years visiting doctors for chronic pain, overwhelming fatigue, and a racing heart every time you stand up, you might feel like you are chasing a mystery. You might have been told you are “just anxious,” or perhaps you’ve been diagnosed with Fibromyalgia.

But what if your loose joints and your dizzy spells are actually part of the same picture?

For many patients, the answer lies in hEDS (Hypermobile Ehlers-Danlos Syndrome) or HSD (Hypermobility Spectrum Disorder). While these conditions are defined by connective tissue, the hallmark sign that often leads to a diagnosis isn’t just double-jointedness—it is a dysfunction of the nervous system.

 

The “Check Engine Light” of the Body

When patients come to our clinic, they often present with a specific collection of struggles:

  • Chronic Pain and stiff joints.
  • Easy Bruising (skin that marks easily).
  • Chronic Fatigue that sleep doesn’t seem to fix.
  • Orthostatic Dysfunction (getting dizzy, seeing stars, or fainting when standing up).
  • Racing Heart Rate (consistent with POTS – Postural Orthostatic Tachycardia Syndrome).
  • Temperature issues (sweating too much or overheating easily).

While hEDS is a connective tissue disorder, nearly 100% of the patients we see also have issues with their Autonomic Nervous System (the automatic system that controls heart rate, digestion, and blood pressure).

Key Insight: We often discover the hypermobility because we are investigating the dizziness and heart rate issues. The loose joints are essentially predisposing the body to these nervous system glitches.

 

Connecting the Dots: The P&S Rollercoaster

To understand why you feel this way, we have to look at the two branches of your autonomic nervous system: the Parasympathetic (Rest and Digest) and the Sympathetic (Fight or Flight).

In hEDS/HSD patients, these two systems are often out of sync:

  1. Sympathetic Withdrawal: When you stand up, your “Fight or Flight” system should activate slightly to push blood to your head. In hEDS, this response is often weak (withdrawal). This leads to Orthostatic Dysfunction—dizziness and POTS.
  2. Parasympathetic Excess: The “Rest and Digest” system overcompensates. While this sounds calm, too muchactivity here causes problems like fainting (Syncope), stomach issues (GI motility disorders), inflammation, and an amplification of pain and anxiety.

The Fibromyalgia Confusion

A significant number of patients—at least one-third—come to us with a previous label of Fibromyalgia.

It is easy to see why: both conditions cause widespread pain and fatigue. However, in many cases, the root cause isn’t Fibromyalgia; it is hEDS/HSD causing joint instability and nervous system dysfunction. Recognizing the difference is vital for getting the right treatment.

 

hEDS vs. HSD: Whats the Difference?

  • hEDS (Hypermobile Ehlers-Danlos Syndrome): This is the most common connective tissue disorder seen in clinics. It has a suspected inheritance pattern (autosomal dominant), meaning it runs in families, though the specific gene hasn’t been identified yet.
  • HSD (Hypermobility Spectrum Disorder): Think of this as the sibling to hEDS. A person has the symptoms (pain, hypermobility) but might miss the strict criteria for hEDS by a point or two. Genetic understanding here is even scarce, but the management is largely the same.

Safety First: Ruling Out the “Scary” Stuff

Because hEDS is part of a larger family of tissue disorders, doctors must perform a Differential Diagnosis. This means running tests to rule out rare, life-threatening conditions like Marfan syndrome, Vascular EDS (vEDS), or Loeys-Dietz syndrome.

These rare conditions affect the aorta and blood vessels. However, for the vast majority of patients (98%+), these are ruled out, leaving us with the hEDS or HSD diagnosis.

 

The Good News

While living with hEDS/HSD can be exhausting and painful, the prognosis is favorable. Unlike the rare vascular types, hEDS/HSD is associated with a normal life expectancy.

Understanding that your racing heart, your anxiety, your tummy troubles, and your joint pain are all connected is the first step toward management. You aren’t “just anxious” and you aren’t imagining it. It is a systemic connection between your tissues and your nerves, and it can be managed.

 

It is important to seek out a clinician with expertise in EDS to make an accurate diagnosis and create a treatment plan. One of the nation’s leading centers is Franklin Cardiovascular Associates, under the direction of Nicholas DePace, MD, FACC. They are located in Sicklerville, New Jersey. franklincardiovascular.com, (856) 589-6034.

It is important to seek out a clinician with expertise in EDS to make an accurate diagnosis and create a treatment plan. One of the nation’s leading centers is Franklin Cardiovascular Associates, under the direction of Nicholas DePace, MD, FACC. They are located in Sicklerville, New Jersey. franklincardiovascular.com, (856) 589-6034


About the Author

Nicholas L. DePace, MD, FACC is a board-certified cardiologist and Medical Director of Franklin Cardiovascular Associates. A graduate of the Mount Sinai School of Medicine, Dr. DePace has decades of clinical, academic, and research experience and has held faculty appointments as a Clinical Professor of Medicine, becoming one of the youngest full professors in Philadelphia at the time of his appointment.

Dr. DePace specializes in the diagnosis and treatment of autonomic nervous system dysfunction (dysautonomia), including POTS, autonomic dysfunction associated with Ehlers-Danlos syndrome (EDS), chronic fatigue, and anxiety-like conditions that are frequently misdiagnosed. He is nationally recognized for his work on parasympathetic and sympathetic (P&S) nervous system imbalance, a core mechanism underlying many complex chronic disorders.

In addition to treating patients from across the United States, Dr. DePace is a prolific clinical researcher and author of multiple nationally distributed medical textbooks published by Springer and W.W. Norton, focusing on autonomic dysfunction, mitochondrial disorders, cardiovascular disease, and mind–body medicine.

👉 View Dr. DePace’s professional profile
👉 View medical books by Dr. DePace

Read More

The “Soft Skeleton” Problem in hEDS: How Faulty Collagen Disrupts the Body

Click Here to Download this Blog Post – The “Soft Skeleton” Problem (Part 7)

By Dr. Nicholas L. DePace, M..D., F.A.C.C – Cardiologist specializing in autonomic dysfunction, Ehlers-Danlos syndrome and POTS.

Heritable Connective Tissue Disorders (HCTDs) are caused by the body making collagen incorrectly.

  1. Collagen is the Body’s “Glue” Collagen is described as the body’s “soft skeleton.” It is found in every organ, blood vessel, and nerve. It gives your body its shape and holds your organs in place. When your body creates faulty collagen, it leads to disorders like Marfan syndrome, Stickler syndrome, and the most common one: Hypermobile Ehlers-Danlos Syndrome (hEDS).
  2. Ruling Out Danger It is critical for doctors to figure out exactly which disorder a patient has. While most patients have hEDS (which is painful but not fatal), there are rare types (like Vascular EDS) that can be life-threatening. Doctors need to rule those out first to ensure the patient is safe.
  3. The Name Matters Less Than the Treatment There is currently no genetic test for hEDS. Doctors often argue over labels—whether to call it hEDS, Hypermobility Spectrum Disorder (HSD), or the older term “Joint Hypermobility Syndrome.” The specific label doesn’t matter much because the treatment is the same: focus on relieving the pain, fatigue, and functional issues.
  4. The “Hallmark” Symptoms For most patients (especially young women), the biggest clue isn’t just flexible joints—it is Autonomic Dysfunction. This means the body’s automatic systems are out of sync. Common symptoms include:
  • POTS: A racing heart when standing up.
  • Chronic Fatigue: Feeling exhausted all the time.
  • Thermoregulatory issues: Sweating too much or trouble controlling body temperature.
  • Easy bruising.

In short, while flexible joints are a sign, the internal symptoms (like heart rate and fatigue) are often what bother the patient the most and lead to the diagnosis.

It is important to seek out a clinician with expertise in EDS to make an accurate diagnosis and create a treatment plan. One of the nation’s leading centers is Franklin Cardiovascular Associates, under the direction of Nicholas DePace, MD, FACC. They are located in Sicklerville, New Jersey. franklincardiovascular.com, (856) 589-6034


About the Author

Nicholas L. DePace, MD, FACC is a board-certified cardiologist and Medical Director of Franklin Cardiovascular Associates. A graduate of the Mount Sinai School of Medicine, Dr. DePace has decades of clinical, academic, and research experience and has held faculty appointments as a Clinical Professor of Medicine, becoming one of the youngest full professors in Philadelphia at the time of his appointment.

Dr. DePace specializes in the diagnosis and treatment of autonomic nervous system dysfunction (dysautonomia), including POTS, autonomic dysfunction associated with Ehlers-Danlos syndrome (EDS), chronic fatigue, and anxiety-like conditions that are frequently misdiagnosed. He is nationally recognized for his work on parasympathetic and sympathetic (P&S) nervous system imbalance, a core mechanism underlying many complex chronic disorders.

In addition to treating patients from across the United States, Dr. DePace is a prolific clinical researcher and author of multiple nationally distributed medical textbooks published by Springer and W.W. Norton, focusing on autonomic dysfunction, mitochondrial disorders, cardiovascular disease, and mind–body medicine.

👉 View Dr. DePace’s professional profile
👉 View medical books by Dr. DePace

Read More