Understanding dysautonomia in EDS and hypermobility

Estimated reading time: 13 minutesDysautonomia is an umbrella term for conditions where the autonomic nervous system, the part of us that runs heart rate, blood pressure, digestion, and temperature without us having to think about it, doesn’t regulate the way it should.

It is very common in hypermobile Ehlers-Danlos syndrome (hEDS), the most common type of EDS, and in hypermobility spectrum disorder (HSD). Postural orthostatic tachycardia syndrome (POTS) is the form most often discussed by my clients.

I live with POTS myself, so I know how real these symptoms are. They are physical, not “just anxiety,” and there is a lot we can do to manage them.

My first real client introduction to dysautonomia, and in this case, POTS was back in 2013 when I had a lady join one of my group classes. She told me she would not be able to do any exercises that involved raising her arms above her head, as she would faint.

She could mitigate this if she was holding a weight in her hands – that would stop the fainting. This makes sense – the autonomic nervous system (ANS) affects blood pressure regulation and blood flow.

The impact of gravity on blood flow with raised arms could mean that the ANS can’t respond adequately to the increased demands, leading to poor blood flow to the brain. The use of holding weights seemed to help due to increased muscle engagement to stimulate the vascular system, improving her blood flow.

I was very curious about her condition and started to research and learn more about dysautonomia. Now, of course, so many of my clients have some form of dysautonomia. It was no surprise that she also had hEDS – as there is often a relationship between these two conditions.

I was officially diagnosed with POTS a few years ago. My symptoms became much worse after COVID, specifically palpitations and dizziness. I realize I was mildly symptomatic most of my life.

Hot baths used to make me feel faint, because the heat widened my blood vessels and my autonomic nervous system couldn’t keep up.”

I still cannot tolerate any kind of sauna or steam bath for the same reasons. I have always struggled with my temperature regulation – it has to be just right. Not too hot and not too cold. I am sure many of you can relate to this too.

There is often a misdiagnosis of this condition, sadly, as many people are told their racing heart rates and dizzy spells are simply due to anxiety. This can be really damaging as people miss out on appropriate treatments for dysautonomia and POTS.

In a 2025 survey of 672 adults with dysautonomia, it took an average of 7.7 years from first symptoms to diagnosis, and EDS was the most commonly reported co-occurring condition (1).

The symptoms of dysautonomia can of course make you feel anxious – especially when you are not sure of the cause.

Any unexplained illness or symptom could lead to increased stress and anxiety, but that does not mean the cause is psychological. Dysautonomia is a physical and physiological condition that is still sadly unrecognized by many healthcare professionals.

Let’s delve deeper into what it is and how it can impact us.

What is dysautonomia?

Dysautonomia is an umbrella term for conditions that affect how the autonomic nervous system regulates the body’s automatic functions.

It is also called autonomic dysfunction or an autonomic nervous system disorder. To understand it, it helps to know how the nervous system works.

The role of the nervous system is to transmit signals between the brain and the body. It does this through the action of nerves. Nerve cells, or neurons, are made of a cell body that has elongated extensions called axons and dendrites.

Nerves are made of bundles of these axons that transmit signals to and from the brain and spinal cord throughout the body. These can be things like movement (signals from the brain to the body), sensory (sound, odor, taste signals from the body to the brain), or automatic functions like breathing and heart rate (2).

The nervous system comprises the central nervous system (CNS) and the peripheral nervous system (PNS). The CNS is composed of the brain and the spinal cord, while the PNS includes all of the nerves that run throughout the body (3).

The autonomic nervous system (ANS) is the part of the PNS that regulates the involuntary functions of the body (4). The autonomic nervous system is composed of the sympathetic nervous system, the parasympathetic nervous system, and the enteric nervous system (4).

Divisions of the Nervous System Credit: Cenveo CC BY 3.0 US

Fight or flight and rest and digest: how the autonomic nervous system works

The autonomic nervous system is the part of the nervous system that controls body functions without conscious effort. It is sometimes called the involuntary nervous system.

Functions include blood flow, blood pressure, heart rate, breathing, body temperature regulation, digestion, excretion of waste, pupil diameter, immune responses and inflammation, blood sugar regulation, hormone secretion, and more (5).

The ANS is divided into three parts, each with its own role:

• The sympathetic nervous system (SNS)
  • Activation of the SNS leads to the “fight or flight” response of increased activity and attention, which allows the body to handle stress (4).
  • This response can include an increase in heart rate and blood pressure, and slowing of digestion (4).
• The parasympathetic nervous system (PSNS)
  • Activation of the PSNS results in the “rest and digest” process (4).
  • During the parasympathetic response, heart rate and blood pressure decrease, and digestion restarts (4).
  • The vagus nerve makes up about 75% of the PSNS, and it innervates nearly all of the major organs (4).
• The enteric nervous system
  • It can work independently, but can also send and receive information to the SNS and PSNS (4).
  • It is made of reflex pathways that control the functions of the digestive system, like muscle contraction/relaxation and blood flow (4).

The SNS and PSNS can work together (synergistically), in opposing activity (antagonistically), or independently because some organs are innervated by only the SNS or only the PSNS (5). It is a very complex system of regulation.

Interestingly, the sympathetic nervous system plays a role in nociception (or sensing of pain), and it has been suggested that the autonomic nervous system is normally involved in the regulation or inhibition of pain signaling. When this regulation is lost, there can be hyperexcitability of the nerve fibers involved in pain sensation (4).

Dysautonomia is closely tied to chronic pain. A 2026 review of 17 studies found signs of dysautonomia in about two-thirds of people living with chronic musculoskeletal pain, more than twice the rate in people without pain (6).

How are EDS, POTS and dysautonomia connected?

Dysautonomia, and POTS in particular, is one of the conditions most often seen alongside hEDS and HSD. Together with mast cell activation syndrome (MCAS), they make up what is often called the triad, or “trifecta,” of EDS, MCAS and POTS.

There are many reasons autonomic nervous system dysfunction can happen, including diseases or disorders, spinal cord injury, toxin exposure, or the use of some drugs (5). Joint hypermobility and EDS are among the conditions that have been linked to dysautonomia.

A 2018 review assessed the published research on this connection, and despite difficulty in comparing the studies directly due to differences in research methods, they found between 41-100% of people with joint hypermobility/EDS (JH/EDS) report orthostatic symptoms on a regular basis.

In the studies that did measure blood flow changes with upright posture, there were abnormalities in 56-80% of JH/EDS patients. The authors concluded that there was evidence for increased sympathetic activity and acknowledged the burden and impact on the quality of life this condition can have (7).

POTS affects around 0.2% of the general population, yet studies report dysautonomia in roughly a third to almost all people with hEDS (8). The link runs both ways: in one study of people with POTS, 31% also met the criteria for hEDS (8).

What causes dysautonomia in EDS?

The reason it is common in hypermobility has not been fully discovered. Researchers think several things may be involved, including laxer blood vessels, changes in the small nerves, and possibly the immune system, but the evidence is still evolving (9). Proposed theories include (7):

• Connective tissue laxity may impact blood vessel tone, leading to increased pooling of blood while standing. This can then lead to a secondary increase in heart rate (POTS) and potentially drops in blood pressure when standing (orthostatic hypotension or OH)
• Peripheral neuropathy affecting sympathetic nerve fibers. Newer research supports this. A 2025 study found small fiber neuropathy, damage to the tiny nerve fibers that include autonomic nerves, in most people with hEDS who were tested (10). A 2026 study found POTS in about half of people with hEDS and small fiber neuropathy, but in none of those whose small fiber neuropathy had no known cause (11). The researchers suggest these nerve changes may work alongside blood pooling rather than replace it (11).
• Adrenergic hyper-responsiveness (an exaggerated response to adrenaline-type stress hormones)
• MCAS – excessive histamine release from mast cells

What are the symptoms of dysautonomia?

Dysautonomia symptoms depend on which part of the autonomic nervous system is affected. For many people, the most noticeable signs are a racing heart, dizziness, or feeling faint when standing, but symptoms can affect many systems in the body and include (13):

• Cardiovascular: orthostatic intolerance (symptoms when standing upright), fainting, orthostatic hypotension (decreased blood pressure with standing), POTS (Postural Orthostatic Tachycardia Syndrome)
• Sudomotor function (control of sweat glands): temperature regulation, excessive sweating (hyperhidrosis), lack of sweating (hypohidrosis)
• Digestion: nausea, gastroparesis, constipation, diarrhea
• Urinary system: retention, increased frequency, urgency, incontinence
• Reproductive system: erectile and ejaculatory dysfunction
• Ocular: Pupil dilation, Horner’s syndrome
• Respiratory system: stridor, cough

Digestive symptoms are especially common. In one study, two-thirds of people with POTS and gut symptoms had slower stomach emptying, and eating can make standing symptoms worse because blood vessels in the gut widen after a meal (9).

What is blood pooling?

Blood pooling is when blood collects in the legs, hands or feet when you are upright, instead of returning efficiently to the heart. In EDS, one theory is that laxer connective tissue affects blood vessel tone (7).

Some people notice their hands or feet turn red, purple or blotchy when they stand. A purple-blue color in the hands and feet is called acrocyanosis, and it is thought to be caused by blood pooling (12). Reduced blood flow to the brain on standing is also common: in a 2025 study, it happened in about four in five people with hEDS and was linked to feeling lightheaded (10).

How is POTS diagnosed?

Postural orthostatic tachycardia syndrome (POTS, often written PoTS in the UK) is diagnosed using a set of criteria. These vary slightly between sources, but most agree that for a diagnosis of POTS, there must be (14, 15, 16):

• A sustained increase in heart rate of greater than (or equal to) 30 beats per minute in an upright position (some say within 10 minutes, others say longer, including a tilt table test). In those aged 12-19 it is 40 beats per minute.
• Long-lasting symptoms occurring longer than 3 months (some say 6 months).
• An absence of orthostatic hypotension
• There is no other cause for orthostatic tachycardia
• Orthostatic symptoms are present (see below)
• Orthostatic symptoms improve when lying down

What are symptoms of POTS?

Symptoms are present when upright and improve with lying down and can include (13, 14, 15, 16):

• Lightheadedness
• Palpitations
• Generalized weakness
• Loss of consciousness
• Blurred vision
• Fatigue
• Nausea
• Headache
• Brain Fog
• Chest and/or abdominal pain
• Shortness of breath
• Discoloration of hands and feet (blood pooling)

POTS is also associated with gastroparesis and functional gastrointestinal disorders (13, 14).

Dr. Blitshteyn hypothesizes POTS may impact the central nervous system as well as the ANS because many of the symptoms are CNS symptoms, including headache, fatigue, chronic dizziness, cognitive dysfunction (brain fog), and sleep disturbances, which seem to impact a large portion of POTS patients (16).

Can you have dysautonomia without POTS?

Yes. While POTS seems to be the most common form of dysautonomia reported with hypermobility, there are many other forms. Some people have orthostatic symptoms but do not meet the POTS criteria on a tilt table test. This is called orthostatic intolerance.

Others have orthostatic hypotension, a sustained drop in blood pressure within three minutes of standing (12).

In a 2025 study of 270 people with hEDS who had autonomic testing, almost all reported symptoms when upright, but only about one in three met the criteria for POTS on a tilt table test (10).

Others had different patterns, including orthostatic hypotension and reduced blood flow to the brain when standing (10). You can find out more about other forms of dysautonomia from Dysautonomia International.

How is dysautonomia managed in EDS and hypermobility?

Managing dysautonomia usually combines specialist medical guidance with everyday strategies that support fluid levels, blood flow, and gradual reconditioning. Fluids, salt, regular exercise, and compression garments are the first-line approaches recommended for POTS in a 2025 American Gastroenterological Association expert review (9).

There are many strategies you can try:

Getting the right medical support

A medical professional who specializes in autonomic dysfunction, like an autonomic neurologist, can be hugely beneficial. Though they are few and far between, Dysautonomia International has a provider directory that may help.

Occupational therapy can help manage symptoms of POTS and other forms of dysautonomia, addressing environmental modifications, exercise, pacing, and more (17).  Emily Rich, OT, PhD, joined me on the blog to discuss exercise therapy in POTS.

Fluids, salt, and eating

Increasing fluids and salt is one of the most common ways to manage dysautonomia, because it supports hydration and blood volume. How much you need is individual, so work it out with your doctor. You can read more about salt and electrolytes for POTS.

A dietitian can also help. A review of nutritional implications in people with dysautonomia and hypermobility advocates for individualized diet strategies that can help manage symptoms and fatigue, including dietary modifications, supplementation, and managing salt and fluid intake (18). Check out this video with Lorna Ryan for more on dietary strategies and myths.

If you feel worse after eating, smaller and more frequent meals may help. After a meal, blood flow is directed to the gut, which can cause low blood pressure (postprandial hypotension).

Compression and positioning

Compression garments can reduce symptoms when standing. A 2021 study found the greatest benefit came from combined abdominal and leg compression, and if full compression wasn’t tolerated, abdominal compression helped on its own (19). This can be a good option if full compression feels too hot to wear.

Compression works by putting gentle pressure on the legs and abdomen. This reduces blood pooling and helps more blood return to the heart, so the heart doesn’t need to beat as fast to keep blood flowing (20).

A 2025 trial tested commercially available waist-high compression tights in people’s everyday lives. In 26 women with POTS, standing heart rate was about 14 beats per minute lower 30 minutes after putting the tights on, and symptoms improved (20). The benefits lasted while the tights were worn for several hours, and heart rate and symptoms went back up when they were taken off. Compression still helped people who were also taking heart rate medication (20).

Both medical-grade and sports-style tights helped. Medical-grade garments, which are usually higher pressure, gave a slightly bigger drop in heart rate, but sports-style tights may be more comfortable, which can make them easier to wear every day (20).

Raising the head of your bed can also help. It is recommended to raise it by 4-6 inches so the bed is on a slant, which is different from adding a wedge or pillows. The idea is that the mild orthostatic stress activates the renin-angiotensin-aldosterone system, leading to salt and water retention and expanding the fluid in the blood (21).

When symptoms flare, some people find it helpful to lie down with their legs raised. Try putting your legs up a wall at 90 degrees.

Everyday strategies for standing and heat

Small movements can help your body cope when you have to stand for a while. Try counterpressure maneuvers like heel raises, walking on the spot, holding onto something, or ankle circles. Even squeezing your bottom muscles can help when you start to feel faint.

Avoiding temperature extremes matters too, as both heat and cold can make symptoms worse. There are strategies to manage heat intolerance that can help.

Movement and nervous system regulation

Regular, appropriate exercise can be really helpful in managing dysautonomia. I often start with supine exercises before moving to seated and gradually introducing standing work. This matches what autonomic specialists recommend: exercise tailored to the individual, often starting lying down or seated, with pacing and gentle movement for people with significant fatigue (12).

There is much that can be done to start conditioning the body without exacerbating symptoms, and we have a collection of classes in The Zebra Club that can be done lying down. We also have the Autonomic Regulation Structured Pathway as well as the POTS and Flares guided program.

Mindfulness and meditation can be useful in regulating the nervous system. Keeping a calm breathing pattern so we don’t overbreathe is also important, and a respiratory physio can be a good source of training for this.

Does dysautonomia go away?

For many people, symptoms improve with time and treatment. In one long-term study of POTS that started in adolescence, about half of patients had improved and around one in five had no symptoms 2 to 10 years after diagnosis (8). Dysautonomia also tends to fluctuate, so it is common to have better periods and flare-ups.

Video: Hypermobility exercises to nourish the parasympathetic nervous system

If you want to try out some gentle and supine movements, this is a great class full of exercises to help nourish and support the parasympathetic nervous system.

FAQ

Can hypermobility cause dysautonomia?

Dysautonomia frequently occurs hypermobility and EDS. While the exact relationship is not known one theory is that the connective tissue laxity can lead to increased laxity of blood vessels and vessel constriction when upright leading to blood pooling. This blood pooling leads to secondary orthostatic symptoms.

What is the root cause of dysautonomia?

There are many different causes and types of dysautonomia. At the root of all of these is an alteration in the function of the parasympathetic and/or sympathetic nervous system. This can be either increased or decreased activity of one or both.

Is dysautonomia the same as POTS?

No. Dysautonomia is the umbrella term, and POTS is one type of dysautonomia. POTS is the form most often reported alongside hEDS and HSD, but not everyone with dysautonomia has POTS. Other forms include orthostatic hypotension and orthostatic intolerance.

What is the root cause of dysautonomia?

Dysautonomia has many causes, but all forms involve too much or too little activity in the sympathetic and/or parasympathetic nervous system. Known causes include some diseases, spinal cord injury, toxins and certain medications, and viral infections can trigger POTS in some people. Dysautonomia is also strongly linked with hEDS, though a direct cause hasn’t been established.

Are EDS and POTS connected?

Yes. POTS is the form of dysautonomia most often reported in people with hEDS, and the two often occur together alongside mast cell activation syndrome (MCAS). POTS affects about 0.2% of the general population, but studies report dysautonomia in roughly a third to almost all people with hEDS.

Can EDS or hypermobility cause dysautonomia?

Dysautonomia frequently occurs alongside hEDS and HSD, but the exact link isn’t fully understood. Leading theories include laxer connective tissue in blood vessel walls, which lets blood pool when you’re upright, and changes in the small nerve fibers that help control blood flow. Both may play a role.

How do I know if I have dysautonomia?

Common signs include dizziness, a racing heart or feeling faint when upright that improves when you lie down, along with digestive, sweating or temperature problems. A clinician experienced in autonomic disorders, most often a cardiologist or neurologist, can assess you with standing heart rate and blood pressure checks like a NASA lean test or a tilt table test.

Is dysautonomia just anxiety?

No. Dysautonomia is a physical, physiological condition. In one large survey of people with POTS, 80% said they had been misdiagnosed with anxiety or told it was all in their head. A racing heart and dizziness can understandably make you anxious, but that doesn’t mean the cause is psychological.

Why do I feel faint when I raise my arms above my head?

Raising your arms works against gravity, which increases the demand on your circulation. If the autonomic nervous system can’t adjust blood flow quickly enough, less blood reaches the brain and you can feel lightheaded or faint. For one of my clients with POTS, holding a weight helped, likely because the muscle engagement supported her blood flow.

Why do hot baths make dysautonomia worse?

Heat widens blood vessels, which lets more blood pool away from the heart and brain. In dysautonomia, the autonomic nervous system may not be able to compensate quickly enough, so hot baths, saunas, steam rooms and hot showers can leave you feeling faint, dizzy or wiped out afterwards.

Why do I feel worse after eating?

After eating, more blood flows to the gut to help with digestion, which can lower blood pressure elsewhere. This is called postprandial hypotension, and it can make dizziness and other symptoms worse after meals. Slower stomach emptying is also common in POTS, and smaller, more frequent meals can help.

Why do people with EDS and dysautonomia need more water?

Many people with dysautonomia, including POTS, benefit from extra fluids and salt because they help support blood volume and reduce symptoms when standing. Fluids and salt are among the first-line approaches for POTS, alongside exercise and compression. How much you need is individual, so work out the right amount with your doctor.

Do compression socks help POTS?

Compression can help. Waist-high compression that covers the abdomen and legs has the strongest evidence for reducing heart rate and symptoms when standing, while lower-leg compression alone had the smallest effect in one study. In a 2025 trial of everyday compression tights, the benefits lasted through several hours of wear.

Jeannie Di Bon

Jeannie Di Bon is a movement therapist, educator and author specializing in hypermobility, Ehlers-Danlos Syndrome and chronic pain. She is the founder of The Zebra Club app and the creator of the Integral Movement Method.

Catherine Nation

Catherine Nation, MS, PhD, holds a Master of Science in Biological Sciences and a doctorate in Tropical Medicine and Parasitology. As Marketing Content Manager at The Zebra Club and a member of the hEDS community, she applies her scientific background to making complex research accessible and accurate.

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