Why Are So Many People with Hypermobility So Exhausted? Understanding the Connection Between EDS and ME/CFS

By Jennifer Richards, LMT, NCBTMB

One of the most common things I hear from people with hypermobility is:

“I’m tired all the time.”

Not just “I need a nap” tired.

We’re talking about the kind of fatigue that can make getting out of bed feel overwhelming. The kind where a trip to the grocery store requires hours—or even days—of recovery. The kind that friends and family often misunderstand because the person “looks fine.”

Many people assume this level of fatigue is simply part of living with Ehlers-Danlos syndrome (EDS) or Hypermobility Spectrum Disorder (HSD). While fatigue is certainly common in these conditions, there may be another explanation for some individuals: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Although these are separate conditions, researchers are finding that they frequently overlap.

What Is ME/CFS?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, chronic illness that affects multiple body systems. It is far more than “being tired.”

People with ME/CFS may experience:

  • Profound fatigue that is not relieved by rest
  • Brain fog and difficulty concentrating
  • Muscle and joint pain
  • Sleep that is not refreshing
  • Dizziness when standing
  • Sensitivity to light, sound, or temperature
  • Digestive problems
  • Difficulty tolerating physical or mental activity

One hallmark symptom sets ME/CFS apart from many other illnesses: post-exertional malaise (PEM).

What Is Post-Exertional Malaise?

Post-exertional malaise is a worsening of symptoms after physical, mental, or emotional activity that would not have caused problems before becoming ill.

The symptoms often do not appear immediately. Instead, they may develop 12 to 48 hours later and can last for days or even weeks.

For example, someone may feel well enough to attend a family gathering on Saturday but wake up Monday feeling as though they have the flu, with overwhelming fatigue, body aches, and brain fog.

This delayed “crash” is considered one of the defining characteristics of ME/CFS.

Why Do EDS and ME/CFS Overlap?

Researchers are still working to understand the connection, but several theories are emerging.

Dysautonomia

Many people with hypermobility also experience dysfunction of the autonomic nervous system, including conditions such as Postural Orthostatic Tachycardia Syndrome (POTS).

Symptoms can include:

  • Rapid heart rate when standing
  • Lightheadedness
  • Brain fog
  • Heat intolerance
  • Fatigue
  • Exercise intolerance

These same symptoms are also common in ME/CFS.

Connective Tissue Changes

Connective tissue is found throughout the body—not only in joints but also in blood vessels, nerves, the digestive tract, and many other organs.

Researchers believe that abnormalities in connective tissue may contribute to problems with blood vessel function and circulation, leading to reduced blood flow to the brain and muscles during activity.

Mast Cell Activation

Some individuals with hypermobility also experience Mast Cell Activation Syndrome (MCAS), which can cause:

  • Flushing
  • Hives
  • Food sensitivities
  • Medication sensitivities
  • Gastrointestinal symptoms

Although research is ongoing, mast cell activation may contribute to inflammation, fatigue, and autonomic dysfunction in some people.

Pain and Sleep

Chronic pain and poor sleep often occur together.

People with EDS frequently report:

  • Difficulty falling asleep
  • Frequent waking
  • Restless legs
  • Waking feeling as tired as when they went to bed

When restorative sleep is disrupted night after night, fatigue can become overwhelming.

Is It Just Deconditioning?

For years, people with chronic fatigue were often told they simply needed to exercise more.

We now know the answer is much more complicated.

People with hypermobility generally benefit from carefully designed strengthening programs that improve joint stability.

However, for individuals with ME/CFS, pushing through fatigue can worsen symptoms because of post-exertional malaise.

Understanding the difference is essential.

What Does This Mean for Massage Therapists?

Massage therapists are often among the first healthcare professionals to hear clients describe symptoms that extend beyond muscles and joints.

When working with hypermobile clients, it is helpful to ask questions such as:

  • How long does it take you to recover after activity?
  • Do you become more fatigued a day or two after doing too much?
  • Do you experience dizziness when standing?
  • Is your sleep restorative?
  • Are there days when your body simply “shuts down”?

These conversations can help guide treatment planning and may encourage clients to discuss their symptoms with their healthcare provider.

Massage therapists do not diagnose ME/CFS, but we can recognize patterns, provide appropriate modifications, and support clients with compassionate, individualized care.

Hope Through Understanding

Not every person with hypermobility has ME/CFS.

Not every person with ME/CFS has hypermobility.

But for those living with both, understanding the connection can be life-changing.

Recognizing that profound fatigue is not laziness—and that symptoms have a physiological basis—can help people seek appropriate care, pace their activities, and better understand their own bodies.

As research continues, we’re learning that hypermobility is far more than flexible joints. It can affect the nervous system, circulation, immune system, sleep, digestion, and overall quality of life.

The more we understand these connections, the better we can support those living with them.


Disclaimer: This article is intended for educational purposes only and should not be considered medical advice. Individuals experiencing persistent fatigue, post-exertional malaise, dizziness, or other concerning symptoms should consult a qualified healthcare professional for evaluation and diagnosis.

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