Why Do So Many EDS Patients Also Have POTS?

You finally got your EDS diagnosis. Then came another one: POTS. Maybe a third. And you're sitting there thinking: are these actually connected, or is my body just falling apart in every possible direction?

They are connected. This is not a coincidence, and it is not in your head.

The connection between EDS and POTS is well documented in the medical literature, and it comes down to one thing: collagen. When collagen doesn't work properly, it doesn't just affect your joints. It affects your blood vessels, your nervous system, and your body's ability to manage something as basic as standing up.

Here's what is actually happening, in plain language.

Quick Definitions: EDS and POTS

EDS: A Collagen Problem

Ehlers-Danlos syndrome is a genetic condition that affects connective tissue, the material that holds your body together. The most common type, hypermobile EDS (hEDS), accounts for 80–90% of all EDS cases.¹

Most people know EDS for the joint hypermobility: the bending too far, the subluxations, the dislocations. But hEDS also causes:

• Widespread chronic pain
• Extreme fatigue
• Skin that bruises or stretches easily
• Digestive problems like bloating, reflux, and slow gut motility

The reason it causes so many things is that collagen is everywhere. It is not just in your joints. It is in your skin, your gut, your blood vessels, and your nerves.

POTS: A Heart Rate Problem Caused by a Blood Flow Problem

POTS stands for Postural Orthostatic Tachycardia Syndrome. That's a mouthful. Here's what it means:

Postural = related to body position. Orthostatic = related to standing upright. Tachycardia = fast heart rate.

When you stand up, your heart rate shoots up abnormally fast, by 30 beats per minute or more within ten minutes, without your blood pressure dropping.² The result is a body that is constantly overworking just to keep you upright.

You might recognize these symptoms:

• Heart pounding or racing when you stand up
• Dizziness, lightheadedness, or nearly fainting
• Brain fog that gets worse when you're upright
• Exhaustion that doesn't match what you've done
• Nausea
• Feeling dramatically better when you lie down

POTS is far more common in women and typically begins between ages 15 and 45.³ It is not anxiety. It is a physical problem with how your body manages blood flow.

So Why Do EDS and POTS Go Together?

The short answer: because the same defective collagen that makes your joints unstable also makes your blood vessels unstable.

Here's what happens every time a healthy person stands up. About half a liter of blood immediately shifts downward toward the legs, pulled by gravity. The body detects this and responds in seconds: blood vessels in the legs tighten, blood gets pushed back up toward the heart, and blood pressure stays stable. Brain keeps getting blood. Everything is fine.

In someone with hEDS, this system breaks down. There are two reasons why.

Reason 1: Your Veins Are Too Stretchy

Collagen is woven into the walls of your blood vessels. When collagen doesn't work properly, blood vessel walls become too loose and stretchy, almost like replacing firm elastic with a worn-out rubber band.

When you stand up, blood shifts into your legs as normal, but then it stays there. The veins can't squeeze it back up. Blood pools in your lower body. Less blood reaches your heart. Less blood reaches your brain.

Your heart's response? Panic. It starts racing to compensate, trying to pump faster to make up for the reduced supply. That racing heart is POTS. It is not a primary heart problem. It is your heart doing its best to compensate for a plumbing problem caused by floppy veins.

This is why you feel dizzy, foggy, and exhausted while your heart is pounding. Your heart is working overtime. Your brain is still not getting enough blood. Both things are true at the same time.

Reason 2: The Nerves That Control Your Blood Vessels Are Also Affected

Your autonomic nervous system is responsible for all the things your body does automatically: breathing, digesting, regulating heart rate, and constricting blood vessels when you stand up.

The small nerve fibers that run this system live inside, and are supported by, connective tissue. When that connective tissue is defective, those nerve fibers can be affected too.

Research has proposed that autonomic dysfunction in hEDS is a key mechanism behind both POTS and the gastrointestinal problems so many EDS patients experience.¹ When the signals that tell blood vessels to tighten don't fire correctly, the pooling problem gets even worse.

So you have two forces working against you at once: structurally floppy veins and a nervous system that isn't sending the right signals to fix it. That combination is why POTS in EDS patients can be so severe.

The "Trifecta": EDS, POTS, and MCAS

Many EDS and POTS patients also have a third condition: Mast Cell Activation Syndrome, or MCAS. Together, these three are sometimes called the "trifecta" in the chronic illness community, and the name fits.

Mast cells are part of your immune system. Their job is to respond to threats. In MCAS, they overfire, reacting to things that shouldn't be a threat, like certain foods, temperature changes, exercise, or stress. When mast cells activate, they release chemicals that cause blood vessels to dilate (widen).

Now think about what that means for someone who already has floppy veins and a blood pooling problem. More dilation. More pooling. Worse POTS symptoms.

A 2025 study published in Frontiers in Neurology confirmed that the co-occurrence of POTS, hypermobility disorders, and MCAS is now firmly established in the research literature. The same study found that treating MCAS, even when strict lab criteria weren't fully met, led to meaningful improvement in patients' symptoms.⁴

If you feel like every system in your body is rebelling at once, this is why. It is not random. It is not anxiety. These three conditions share a biological thread, and they make each other worse.

Symptoms That Suggest POTS Alongside EDS

Because EDS and POTS share so many symptoms, including fatigue, pain, and brain fog, POTS often goes unrecognized for a long time. Here are signs that POTS may be part of your picture:

• Your heart races or pounds when you go from lying or sitting to standing
• You feel much worse when upright and dramatically better lying down
• You get dizzy or feel like you might faint in warm environments, hot showers, or after eating
• You have aching pain across your neck, shoulders, and upper back that gets worse when standing. This is called "coat hanger pain" and it is caused by poor blood flow to those muscles when you're upright
• Your legs change color or look mottled when you stand for a while
• Your brain fog is noticeably worse when you've been upright

If several of these sound familiar, it is worth asking your doctor about a formal POTS evaluation.

What Treatment Looks Like When You Have Both

Here is something that matters a great deal: treating POTS without addressing EDS, or treating EDS without addressing POTS, often doesn't work very well. The conditions are too intertwined. You have to manage both at the same time.

Treatment is highly individual, but typically includes some combination of:

More Salt and Fluids

More blood volume in the system means less dramatic pooling when you stand. Increasing salt and fluid intake is one of the most direct ways to reduce POTS symptoms. For some patients, IV fluids are used when oral hydration isn't enough.

Compression Garments

Compression stockings and abdominal binders physically prevent blood from pooling in the lower body. They work best when put on before you even get out of bed in the morning, before gravity has a chance to start working against you.

Exercise, Done Very Carefully

Exercise is one of the best long-term tools for POTS, but it has to be introduced the right way. Upright exercise can make symptoms much worse at first. Most patients start with horizontal exercise, such as swimming, recumbent cycling, and rowing, and gradually work toward upright activity as their body adjusts.

Medications

Several medications can help. Some slow the racing heart. Some help the body retain more fluid. Some help blood vessels constrict more effectively. The right one depends on what is driving your particular POTS, which is why getting an accurate picture of your individual presentation matters.

Stabilizing the Joints

Physical therapy focused on joint stability isn't just about pain. When your joints are better supported, you're able to move more, which makes the cardiovascular rehabilitation for POTS more effective. The two things build on each other.

Treating MCAS (If Present)

If MCAS is part of the picture, managing it through antihistamines, mast cell stabilizers, and dietary changes can meaningfully reduce POTS symptom flares. Research supports treating MCAS even when lab results are inconclusive, if the clinical picture points to it.

You Don't Have to Figure This Out in Pieces

A lot of EDS patients come to us after years of being sent from specialist to specialist: a cardiologist for the POTS, a rheumatologist for the joints, a gastroenterologist for the gut issues, with no one connecting the dots. Each provider treats their piece. Nobody treats the whole picture.

At Mind + Body Medicine, Dr. Cohen approaches EDS and POTS as one problem with one shared root cause. That changes what treatment looks like. Instead of managing symptoms in isolation, we build a plan around what is actually driving them.

Our intensive outpatient program brings together pain management, autonomic evaluation, infusion therapies, and rehabilitation, coordinated in one place, with one team that understands how these conditions interact.

If you have been told your symptoms don't add up, or that you're just anxious, or that there's nothing else to try, we'd disagree. There is more to understand here, and there is more that can be done.

Ready to get comprehensive care for EDS and POTS in Dallas-Fort Worth?

If you're ready to work with a team that understands how these conditions connect, we'd love to hear from you. Schedule a consultation at Mind + Body Medicine.

Sources

¹ Wu W, Ho V. An overview of Ehlers Danlos syndrome and the link between postural orthostatic tachycardia syndrome and gastrointestinal symptoms with a focus on gastroparesis. Front Neurol. 2024 Aug 29;15:1379646. doi: 10.3389/fneur.2024.1379646. PMID: 39268060; PMCID: PMC11390471. Available: https://pmc.ncbi.nlm.nih.gov/articles/PMC11390471/. Accessed May 26, 2026.

² Wu W, Ho V. An overview of Ehlers Danlos syndrome and the link between postural orthostatic tachycardia syndrome and gastrointestinal symptoms with a focus on gastroparesis. Front Neurol. 2024 Aug 29;15:1379646. doi: 10.3389/fneur.2024.1379646. PMID: 39268060; PMCID: PMC11390471. Available: https://pmc.ncbi.nlm.nih.gov/articles/PMC11390471/. Accessed May 26, 2026.

³ Wu W, Ho V. An overview of Ehlers Danlos syndrome and the link between postural orthostatic tachycardia syndrome and gastrointestinal symptoms with a focus on gastroparesis. Front Neurol. 2024 Aug 29;15:1379646. doi: 10.3389/fneur.2024.1379646. PMID: 39268060; PMCID: PMC11390471. Available: https://pmc.ncbi.nlm.nih.gov/articles/PMC11390471/. Accessed May 26, 2026.

⁴ Yao L, Subramaniam K, Raja KM, Arunachalam A, Tran A, Pandey T, Ravishankar S, Suggala S, Hendrickson C, Maxwell AJ. Association of postural orthostatic tachycardia syndrome, hypermobility spectrum disorders, and mast cell activation syndrome in young patients; prevalence, overlap and response to therapy depends on the definition. Front Neurol. 2025 Apr 25;16:1513199. doi: 10.3389/fneur.2025.1513199. PMID: 40352770; PMCID: PMC12063504. Available: https://pmc.ncbi.nlm.nih.gov/articles/PMC12063504/. Accessed May 26, 2026.

⁵ Yao L, Subramaniam K, Raja KM, Arunachalam A, Tran A, Pandey T, Ravishankar S, Suggala S, Hendrickson C, Maxwell AJ. Association of postural orthostatic tachycardia syndrome, hypermobility spectrum disorders, and mast cell activation syndrome in young patients; prevalence, overlap and response to therapy depends on the definition. Front Neurol. 2025 Apr 25;16:1513199. doi: 10.3389/fneur.2025.1513199. PMID: 40352770; PMCID: PMC12063504. Available: https://pmc.ncbi.nlm.nih.gov/articles/PMC12063504/. Accessed May 26, 2026.