If you have Ehlers-Danlos Syndrome, there’s a good chance you’ve also experienced dizziness when you stand up, a heart that races for no obvious reason, crushing fatigue, or a foggy brain that makes it hard to think straight. You may have been told it’s anxiety. You may have been told it’s deconditioning. You may have been dismissed entirely.
What nobody told you — and what makes a significant difference once you understand it — is that these symptoms might have a name: POTS. And if you have EDS, the two conditions are very likely connected.
At Thunderbird Family Medicine, Dr. Scott Marquard works with EDS patients who are also navigating POTS, and helping people understand this overlap is one of the more important things we can do. Here’s what you need to know.
What Is POTS?
POTS stands for Postural Orthostatic Tachycardia Syndrome. It’s a form of dysautonomia — a dysfunction of the autonomic nervous system, which controls all the things your body does automatically without you thinking about it: heart rate, blood pressure, digestion, temperature regulation, and more.
Patients with POTS demonstrate a heart rate increase of 30 or more beats per minute with prolonged standing, often have high levels of upright plasma norepinephrine reflecting sympathetic nervous system activation, and many have a low blood volume. POTS can be associated with a high degree of functional disability. nih
Symptoms include mental clouding — commonly called brain fog — blurred or tunneled vision, shortness of breath, palpitations, tremulousness, chest discomfort, headache, lightheadedness, and nausea. While pre-syncope is common, only a minority of patients actually faint. nih
The key feature that distinguishes POTS from other conditions: the symptoms are triggered or significantly worsened by standing or upright posture. That shower that leaves you exhausted. The grocery store line that makes your heart pound. Standing up from bed in the morning that makes the room spin. These aren’t random — they’re positional.
The EDS-POTS Connection
This is where things get clinically interesting — and where a lot of patients finally start connecting dots that had been scattered across years of confusing symptoms.
Researchers estimate that around 8 in 10 people with EDS also experience symptoms of POTS. Conversely, approximately 31% of people with POTS have hypermobile EDS. Medical News Today
That’s not a coincidence — it’s biology. POTS may be common in individuals with EDS because EDS can affect blood vessel elasticity, potentially increasing blood pooling and impairing blood flow. In other words, when connective tissue is lax throughout the body — which is the defining feature of EDS — that laxity extends to the walls of blood vessels. When you stand up, blood pools in the legs and lower body instead of returning efficiently to the heart. Your autonomic nervous system tries to compensate by spiking your heart rate. That spike is POTS. Medical News Today
Autonomic dysfunction in patients with hypermobile EDS may also present as tachycardia, postural hypotension, gut dysmotility, disrupted bladder function, and altered regulation of sweating — which is why POTS in EDS patients often comes with a constellation of symptoms that seem completely unrelated at first glance but all trace back to the same root cause. Frontiers
Why POTS Gets Missed — Especially in EDS Patients
The diagnostic picture here is frustrating, and patients deserve to have it acknowledged plainly.
A 2019 study surveying nearly 5,000 POTS patients found that patients wait an average of 4 to 6 years before receiving a correct diagnosis, see an average of 7 different doctors along the way, and 77% of patients report being told their symptoms were psychiatric or psychological before their POTS diagnosis. Nearly 60% were explicitly told their symptoms were “all in their head.” Cognitive FX
The reason this happens is partly overlap: POTS symptoms — including rapid heart rate, dizziness, and lightheadedness — overlap significantly with anxiety and panic disorders, making misdiagnosis easy without proper testing. But it’s also about gender bias. POTS disproportionately affects women, especially between the ages of 15 and 50, and studies show that women are more likely to have their physical symptoms dismissed as emotional or hormonal, contributing to further delays in diagnosis. Dr. CynthiaDr. Cynthia
For EDS patients specifically, this compounds an already difficult diagnostic journey. Many arrive at Thunderbird Family Medicine having already been told their symptoms are anxiety, or hypochondria, or simply stress. They’re not. And recognizing that matters — both for getting the right diagnosis and for finally getting the right treatment.
How POTS Is Diagnosed
There’s no single blood test that confirms POTS. Diagnosis is clinical, based on symptoms, history, and objective heart rate measurements with position change.
A tilt-table test — where you’re secured to a table and raised to varying degrees while vitals including heart rate, blood pressure, and blood oxygen are monitored — is one diagnostic approach. A standing test, where POTS symptoms worsen with prolonged standing, is another. Healthline
Your provider will also want to rule out other causes of orthostatic intolerance, including dehydration, anemia, thyroid dysfunction, and medications that may be contributing. In an EDS patient presenting with these symptoms, a POTS workup should be part of a comprehensive evaluation — not an afterthought.
How We Approach Treatment
The good news is that POTS, while chronic and often frustrating, responds well to a structured, layered management approach. Most people can significantly reduce their symptom burden with the right combination of lifestyle strategies and, when needed, medication.
Fluids and Salt
This is usually the starting point, and it’s more evidence-based than it might sound. Most people with POTS will improve with three behavioral changes: higher sodium intake, compression garments, and gradual exercise. Harvard Health
For the hypovolemic form of POTS, increasing sodium intake to 3,000 to 10,000 mg per day and drinking 2 to 2.5 liters of fluid per day is often recommended. This needs to be individualized — more salt isn’t appropriate for everyone, particularly anyone with hypertension or cardiac issues — so this is a conversation to have with your provider rather than something to self-prescribe. Cleveland Clinic
Compression Garments
Waist-high compression garments — not just below-the-knee stockings — reduce blood pooling by applying external pressure to the legs and abdomen, and research suggests abdominal compression is particularly beneficial. For EDS patients who are already managing joint instability with bracing, adding compression garments for POTS is a natural extension of that same principle. The Fibro Guy
Exercise — The Right Kind, Done the Right Way
Exercise is one of the most effective long-term treatments for POTS, and also one of the most misunderstood. Many POTS patients have tried to exercise and felt dramatically worse — and concluded that exercise isn’t for them. That’s not quite right.
Some of the best data for treating POTS comes from cardiac rehab. Studies show that reclined aerobic exercise — swimming, rowing, and recumbent bicycling — has the best results. Strengthening the core and leg muscles is also helpful. Cleveland Clinic
The key is starting horizontal or semi-reclined and building gradually. Upright exercise is often intolerable early in treatment — that’s expected, not a sign that you should stop. Physical therapy can support POTS management through guided recumbent or semi-recumbent exercises to improve cardiovascular conditioning in a way that’s more tolerable, and over time this can help reduce the severity of symptoms alongside medical treatment and lifestyle adjustments. Womeninmotionpt
Meal Timing and Composition
Eating a large meal can worsen POTS symptoms, as the body redirects blood to aid digestion. Eating several smaller meals throughout the day instead of two or three large ones is generally recommended, along with a diet high in fiber and complex carbohydrates to reduce blood glucose spikes. Cleveland Clinic
Medications When Needed
Not everyone with POTS needs medication, but when lifestyle measures aren’t enough, there are several well-established options. Beta-blockers help manage heart rate; fludrocortisone increases blood volume to reduce orthostatic symptoms; and midodrine constricts blood vessels to improve blood flow. Medication selection is highly individual and depends on your POTS subtype, other conditions, and how you respond — this is something Dr. Marquard will work through carefully with you rather than applying a one-size-fits-all approach. The EDS Clinic
Managing EDS and POTS Together
Having both conditions simultaneously adds complexity — but it also means that treating one often helps the other. Improving joint stability through physical therapy reduces the overall physical burden on the body. Managing POTS symptoms reduces the fatigue and brain fog that make EDS pain harder to cope with. Salt and fluid management for POTS supports the blood pressure regulation that EDS patients often struggle with independently.
Both conditions can exacerbate each other, making comprehensive care essential. Fragmented care — where your cardiologist manages POTS and your rheumatologist manages EDS and they’ve never spoken — tends to leave patients worse off than coordinated care that sees the full picture. The EDS Clinic
That’s the approach we take at Thunderbird Family Medicine. Dr. Marquard understands EDS and POTS as connected conditions, not separate problems to be siloed across different specialists. Your primary care provider should be the quarterback of that coordination — making sure referrals, treatments, and lifestyle plans are working together rather than at cross-purposes.
When to Come Talk to Us
If you have a confirmed EDS diagnosis and are experiencing any of the following, a POTS evaluation is worth having:
- Dizziness or lightheadedness when standing
- Heart racing without an obvious cause, especially with position changes
- Fatigue that isn’t explained by sleep quality alone
- Brain fog that affects your ability to concentrate or work
- Nausea, especially when upright for extended periods
- Feeling significantly worse after showers or in the heat
You don’t need to have all of these. You don’t need a dramatic fainting episode. If the pattern sounds familiar, bring it up.
Schedule an appointment with Dr. Marquard at Thunderbird Family Medicine — and let’s look at the full picture together.
This post is for educational purposes and does not substitute for individualized medical evaluation. If you believe you are experiencing a cardiac emergency, call 911 immediately.