Fatigue in EDS

Why Does EDS Cause So Much Fatigue?

There are a few major reasons:

1. Circulation Problems from POTS:
   When someone with POTS stands up, their heart races, and blood doesn’t move efficiently to the brain or muscles. This leads to dizziness, “brain fog,” and sudden crashes of energy, even after doing simple things. Some have small nerve damage that makes it even worse.
2. Inflammation from MCAS:
   With MCAS, certain immune cells constantly release chemicals (like histamine and cytokines) that cause widespread inflammation. This triggers the brain to feel tired as a built-in response to illness—even when there’s no infection. These chemicals also mess with sleep, cause pain, and affect digestion and blood pressure, all of which drain more energy.
3. Low Cellular Energy from Mitochondrial Problems:
   Mitochondria are like the power stations in our cells. In EDS, they might not work properly—possibly because of constant stress on the body from unstable joints and poor blood flow. When cells don’t get enough energy, people feel deeply exhausted and weak, like no amount of rest helps.
4. Muscle Strain from Loose Joints:
   Because joints in EDS are extra flexible, muscles have to work harder just to keep the body stable. That means even standing or walking can be tiring. Add in weak muscles and poor coordination, and it takes way more energy just to get through the day.
5. Chronic Pain and Poor Sleep:
   Constant pain wears people out mentally and physically. It also makes sleep worse. Even when someone with EDS sleeps all night, they often wake up feeling like they never rested. Pain and poor sleep feed into each other and deepen the fatigue.
6. Mental Load and Stress:
   Living with EDS isn’t just physically hard—it’s mentally exhausting. Patients have to monitor every movement, manage symptoms, plan their day around flares, and often deal with multiple medications. That constant vigilance takes a toll on energy.

Other Things That Make Fatigue Worse in EDS:

• Bad Sleep from insomnia, sleep apnea, or joint problems that affect breathing.
• Lack of Exercise because pain or dizziness makes activity hard, which weakens the body more.
• Thyroid and Autoimmune Issues like Hashimoto’s or lupus, which can also cause tiredness.
• Nerve Damage that causes pain and messes with body temperature and blood pressure.
• Gut Problems that lead to poor nutrition and vitamin deficiencies (like low B12 or iron).
• Mental Health Issues like depression or anxiety, which can sap energy too.
• Fibromyalgia or similar conditions that heighten pain and sensory overload.

What Do Patients Say About Their Fatigue?

People with EDS often say the fatigue is worse than the pain. They wake up tired, even after lots of sleep. They feel “bone tired”—a kind of exhaustion that never goes away. It affects their ability to work, go to school, make plans, or even just function at home.

Many say it’s one of the most misunderstood parts of their condition. Because fatigue is invisible, others don’t always believe how hard it hits. But it’s real, and it’s serious.

What Can Help?

There’s no single fix, but some approaches that help include:

• For POTS: Salt, fluids, compression gear, and certain medications.
• For MCAS: Antihistamines, mast cell stabilizers, and avoiding triggers.
• For Mitochondria: Supplements like CoQ10 or carnitine may help (more research needed).
• For Pain and Sleep: Targeted therapies and sleep studies.
• For Strength: Gentle physical therapy with pacing and careful movement.

What’s the Takeaway?

Fatigue in EDS isn’t caused by one thing. It’s the result of many systems breaking down or working overtime. It’s physical, mental, and emotional. Recognizing and treating each piece of the puzzle can help lighten the load.

Researchers are still learning more, especially about energy problems at the cellular level and how the brain responds to chronic illness. There’s hope that better treatments are on the way—but for now, understanding and supporting patients is a critical first step.

Fatigue in Ehlers-Danlos Syndrome (EDS): Why It Happens and What Makes It Worse

People with hypermobile Ehlers-Danlos Syndrome (hEDS) often feel extremely tired all the time. This type of tiredness affects nearly 70% of patients and is one of the hardest parts of living with EDS. Many also have other conditions like POTS (a problem with blood pressure and heart rate when standing), MCAS (a condition that causes allergic-type reactions), and possible issues with how their cells produce energy. Together, these conditions make the fatigue even worse.

This tiredness isn’t just feeling sleepy—it’s deep exhaustion that doesn’t go away with rest. It can be so bad it resembles chronic fatigue syndrome (ME/CFS). Below, we explain how each of these conditions affects energy and how they all link together.

Why People with EDS Feel So Tired

Fatigue in EDS isn’t caused by just one thing. Several body systems don’t work quite right, and when combined, they leave people feeling drained.

1. Autonomic Dysfunction (Like POTS) and Poor Blood Flow

Many people with hEDS also have a condition called POTS. This makes your heart beat too fast when you stand up and causes problems with blood circulation. That means your brain and muscles don’t get enough oxygen, especially when you're upright. This can lead to dizziness, brain fog, and deep fatigue even after doing very little. About 80–90% of people with hEDS show signs of this problem. Their blood vessels can also be too stretchy, leading to blood pooling in the legs and tired muscles.

On top of that, many hEDS patients have damage to small nerve fibers (small fiber neuropathy), which may be the root cause of POTS. This nerve damage also adds to the fatigue by interfering with how the body manages blood pressure and temperature.

2. Mast Cell Activation (MCAS) and Inflammation

MCAS happens when certain immune cells release chemicals they shouldn’t. These chemicals cause inflammation and allergic-like symptoms. Even without obvious allergic reactions, this constant low-level inflammation can make you feel sick and very tired—like you have the flu all the time.

These chemicals can also mess with your brain, leading to sleepiness and low motivation. They can interrupt sleep, cause pain, trigger stomach problems, and make symptoms of POTS worse. When inflammation is treated with medications like antihistamines, patients often notice they have more energy—showing just how important this inflammation is.

3. Mitochondrial Dysfunction (Energy Shortage in Cells)

Mitochondria are the parts of your cells that produce energy. In EDS, scientists believe these "power plants" don’t work as well as they should. This may be due to constant stress on the body from loose joints and blood flow problems. Some research shows that people with EDS may have issues with how their cells make energy, possibly leading to more fatigue.

This energy shortfall shows up as a deep, bone-level tiredness that doesn’t get better with sleep. A few patients even have genetic issues with their mitochondria. Fixing these problems (with supplements like CoQ10 or carnitine) might help, but more research is needed.

4. Muscle Fatigue from Weak Joints

Because joints in EDS are loose, muscles have to work harder to keep everything stable. Even standing or walking can be tiring because the muscles are always “on.” This leads to early muscle fatigue. Many people with EDS also have weak muscles or poor sense of movement, which makes things worse. Even small movements can cause their muscles to burn out quickly due to poor blood flow and low oxygen in the tissues.

Pain, Poor Sleep, and Brain Fog: More Reasons for Fatigue in EDS

5. Chronic Pain Drains Energy

Pain is a big part of life for many people with EDS. Living with pain every day uses up a lot of mental and physical energy. Pain also makes it harder to sleep well, which means your body never fully recharges. Even if someone sleeps 8 hours, they often wake up feeling just as tired because the sleep wasn’t deep or restful.

This creates a cycle: pain leads to poor sleep, poor sleep increases pain sensitivity, and both together increase fatigue.

Some people with EDS also have sleep disorders like sleep apnea or insomnia. In EDS, floppy tissues can cause the airway to close during sleep, leading to breathing problems. That’s why sleep studies are often recommended for people who wake up tired or feel sleepy all day.

6. The Brain’s Role – Central Fatigue

Fatigue also comes from the brain. When someone has chronic pain or illness, the brain and spinal cord can become overly sensitive. This makes even small things feel overwhelming, leading to mental exhaustion.

There may also be brain inflammation from immune reactions or long-term stress. Patients describe this as “brain fog”—a constant haze that makes it hard to think or focus. This can happen from poor blood flow in POTS, inflammatory chemicals in MCAS, or simply from the stress of living with a complex condition like EDS.

People with EDS also have to constantly think about how to move, avoid injuries, and manage symptoms. This mental effort adds to the fatigue. Many say the act of managing their health is exhausting in itself.

Other Conditions That Make Fatigue Worse in EDS

Many people with EDS also have other health problems that increase their fatigue. These conditions often overlap and make it harder to feel better.

7. Sleep Disorders

Sleep problems are common in EDS. This includes insomnia, sleep apnea (where breathing stops during sleep), and waking up a lot during the night. Some EDS patients have floppy airways that collapse during sleep. Even if they sleep for hours, the sleep isn’t refreshing. Getting a sleep study and using treatments like CPAP (for apnea) can help restore energy.

8. Deconditioning (Loss of Fitness)

When someone feels sick or in pain for a long time, they naturally move less. Over time, this causes muscles and the heart to weaken, which makes even small tasks exhausting. This is a common cycle in EDS—pain and dizziness lead to inactivity, and inactivity leads to even more fatigue. Physical therapy, done slowly and carefully, can help rebuild strength.

9. Autoimmune and Hormonal Issues

Some people with EDS also have autoimmune diseases like Hashimoto’s or lupus, which can cause their own type of fatigue. Low thyroid levels, for example, are a well-known cause of low energy. In some POTS patients, the immune system may even be attacking nerve pathways. Hormone imbalances from long-term stress may also play a role.

10. Small Fiber Neuropathy (SFN)

As mentioned earlier, this type of nerve damage is common in EDS and contributes to both pain and fatigue. These tiny nerves help control things like body temperature and blood pressure, so when they don’t work right, the body becomes less stable, leading to more energy loss.

11. Digestive and Nutritional Problems

Digestive issues like nausea, gastroparesis (slow stomach emptying), or IBS are common in EDS. Some people can’t absorb nutrients well due to these problems, leading to low levels of iron, B12, or vitamin D—all of which can make fatigue worse. Constant stomach pain or food intolerances (often linked to MCAS) also wear people down.

12. Mental Health

Living with constant fatigue and pain is emotionally draining. Depression and anxiety are common and can make tiredness worse. Anxiety can cause sleep problems and muscle tension. Depression can reduce motivation and make people feel sluggish. Even though the fatigue in EDS is not just “in the head,” mental health still plays a role in how bad it feels.

13. Fibromyalgia and Sensory Overload

Some people with EDS are also diagnosed with fibromyalgia, a condition that causes widespread pain and fatigue. The nervous system becomes hypersensitive, making normal sensations feel painful or overwhelming. This constant over-activation of the nervous system uses up energy and makes people avoid activity, which increases fatigue. Migraines are also common and can leave patients wiped out for days.

How Fatigue Affects Daily Life for People with EDS

Fatigue in EDS isn’t just “feeling tired.” Many people describe it as a deep, crushing exhaustion that doesn’t go away—even after sleep or rest. Some patients say it affects them more than pain does.

In interviews, EDS patients often say things like:

• “The fatigue is worse than the pain.”
• “I wake up tired. Rest doesn’t help.”

This kind of fatigue makes it hard to work, go to school, or socialize. Many people with EDS have to plan their day very carefully. They might only be able to do one or two tasks before needing to rest again. Some can’t work full time or keep a regular schedule because their energy levels crash unexpectedly.

Social life also suffers. Many have to cancel plans last minute because they’re too tired. This can lead to feeling isolated and low in mood.

Studies show this fatigue is real and serious:

• In one large survey, almost 70% of EDS patients said they were always tired.
• Those who also have POTS or MCAS are even more likely to experience this kind of fatigue.
• People with more fatigue report worse quality of life and more trouble doing everyday things.

One major problem is that fatigue isn’t visible. People may look fine on the outside, so others don’t realize how bad it is. Because of this, EDS patients often feel misunderstood or judged. Some are told it’s “just depression” or “laziness,” which adds emotional stress on top of everything else.

But as we've seen, this fatigue has real physical causes. Thankfully, awareness is growing, and more doctors now recognize that fatigue is one of the most disabling parts of EDS.

What New Research Is Saying About Fatigue in EDS

We’ve learned a lot about fatigue in EDS in recent years. Here are some key things researchers now know:

• Fatigue is extremely common and often linked to weak muscles, poor blood flow when standing, and bad sleep.
• POTS is very common in hEDS and is a major reason people feel exhausted, especially when upright.
• Treating pain and improving sleep can really help boost energy.
• Many patients were once told they had chronic fatigue syndrome or fibromyalgia—only later was EDS diagnosed.

Because so many systems in the body are involved, experts now recommend a team approach to treatment. This might include a heart doctor, physical therapist, pain specialist, and more.

New and Emerging Ideas

Some new research is also exploring things we didn’t understand before:

• Mast Cell Activation and Fatigue: Studies in diseases like mastocytosis show that chemicals released by mast cells can make people feel very tired. This might also apply to MCAS in EDS.
• Mitochondrial Problems: Some researchers believe that people with EDS might have a problem with how their cells make energy. New studies are looking at whether treatments like CoQ10 or carnitine might help.
• Small Fiber Nerve Damage: This nerve damage is now seen as a real part of EDS, especially in patients who have both fatigue and nerve pain. Treatments might include medicines that help nerve pain or even immune-based therapies if the damage is autoimmune.
• Brain Inflammation: There’s a growing interest in whether inflammation in the brain plays a role in EDS-related fatigue. This is being studied in both EDS and chronic fatigue syndrome. If proven, new treatments like anti-inflammatory drugs for the brain could help.
• Post-COVID Fatigue: Doctors are seeing similar fatigue and POTS-like symptoms in people after COVID. Some researchers think people with EDS may be more likely to develop this. Understanding the overlap may help both groups.

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