“POTS and EDS: The Dysfunctional Dynamic Duo You Never Asked For”
- Antonia Kenny
- Mar 1
- 4 min read
POTS and EDS: The Unholy Alliance of Chronic Chaos
Let’s talk about POTS and EDS, two acronyms that sound like tech startups but instead team up to turn your body into a theme park of unpredictable misery. If you’re here because you’ve Googled “why do I feel like I’m dying every time I stand up?”—welcome! Pull up a compression sock, grab some salty snacks, and let’s unpack this fascinatingly cruel intersection of medical weirdness.
POTS: The Drama Queen of Circulatory Dysfunction
Postural Orthostatic Tachycardia Syndrome (POTS) is a condition where your heart decides standing up is basically an extreme sport. Normally, when you stand, your autonomic nervous system (ANS) subtly adjusts to keep blood from pooling in your legs, ensuring your brain stays happily oxygenated. But if you have POTS? Your body panics. Your heart rate skyrockets by 30+ beats per minute (or 40+ if you're under 19), trying to overcompensate for the blood redistribution failure. The result? Dizziness, brain fog, nausea, and, if you're lucky, a spontaneous collapse in the middle of Tesco.
Symptoms of POTS
Dizziness & fainting: Stand up, fall down—like a Victorian lady with a dramatic backstory.
Chronic fatigue: Imagine feeling like you’ve run a marathon after just putting on socks.
Brain fog: The mental equivalent of buffering WiFi.
Nausea: Every meal is a game of chance.
Cold extremities: Because your circulatory system decided hands and feet are low-priority zones.
The cause? POTS is often secondary to underlying conditions, including Ehlers-Danlos Syndrome (EDS), which brings us to our next chaotic contender.
EDS: The Stretch Armstrong of Medical Conditions
Ehlers-Danlos Syndrome (EDS), specifically the hypermobile type (hEDS), is a genetic disorder that turns your connective tissue into cheap elastic bands. Your ligaments, meant to be sturdy ropes, behave more like overcooked spaghetti. It’s like your body’s structural integrity handed in its resignation and left you to figure things out alone.
What Makes hEDS So Fun?
Chronic joint pain & instability: Welcome to the never-ending game of “dislocation or dramatic pop?”
Fatigue: Holding your skeleton together is exhausting, apparently.
GI issues: Because why should digestion function smoothly?
Autonomic dysfunction: Your body forgets how to regulate things like blood pressure, heart rate, and temperature.
So, where does POTS fit in? Well, connective tissue also supports blood vessels. If that scaffolding is faulty (thanks, EDS), veins struggle to push blood back up from the lower body. This results in blood pooling, which leads to—you guessed it—POTS.
Diagnosis: The Medical Equivalent of an Escape Room
Testing for POTS
If you suspect POTS, brace yourself for the tilt table test, a medieval-sounding ordeal where you’re strapped to a table and tilted upright while doctors monitor your vitals. If your heart rate skyrockets without a corresponding blood pressure drop, congratulations! You have POTS. Enjoy your complimentary prescription for electrolyte drinks and salt cravings.
Testing for hEDS
Unlike other types of EDS, hEDS has no genetic test (yet). Diagnosis relies on clinical criteria, including hypermobility, joint instability, and a collection of weirdly specific symptoms. A geneticist or rheumatologist might evaluate you using the Beighton Score, a flexibility test that turns your joints into a party trick.
Managing the Chaos: Treatment & Coping Strategies
Bad news: there’s no cure for POTS or hEDS. Good news: symptom management can make life slightly less of an endurance test.
POTS Management:
Salt & Fluids: You are now a human salt lick. Increasing blood volume helps stabilize circulation.
Compression Garments: Thigh-high socks are officially a medical necessity.
Small, Frequent Meals: Eating too much at once can divert blood away from your brain—never ideal.
Exercise: Slowly build tolerance with recumbent exercises (like swimming or cycling) to avoid triggering symptoms.
Medications: Beta-blockers, fludrocortisone, and midodrine may help, depending on symptoms.
hEDS Management:
Physical Therapy: Strengthening muscles helps compensate for unstable joints.
Bracing & Support: Splints, braces, and kinesiology tape can provide external stability.
Pain Management: A mix of NSAIDs, physical therapy, and lifestyle adjustments (plus, let’s be honest, occasional crying).
GI Support: Diet adjustments, gut motility meds, and, in severe cases, feeding tubes may be needed.
Oh, and if anyone tells you to “just drink more water” as if hydration is a magic cure, feel free to roll your hypermobile eyes so hard they dislocate.
So, Why Does This Duo Exist?
Short answer: We don’t fully know. The connection between POTS and EDS is well-documented, but research is still catching up. Some theories suggest that connective tissue dysfunction affects blood vessel integrity, while others point to autonomic nervous system dysfunction as a shared culprit. What we do know is that the overlap is significant, with studies estimating 20-50% of people with hEDS also meet criteria for POTS (source: Dysautonomia International).
Living with POTS & EDS: A Dark Comedy
If life with POTS and hEDS were a movie genre, it’d be a tragicomedy. One moment you’re elegantly face-planting in public, the next you’re Googling “how much salt is too much salt?” at 3 a.m. But there’s an odd camaraderie in the chronic illness community—because sometimes, if you don’t laugh, you’ll cry (and dislocate a rib in the process).
Final Thoughts: Salt, Socks, and Solidarity
POTS and EDS might make life feel like an uphill battle on roller skates, but they also make you resourceful, resilient, and disturbingly well-versed in NHS waiting lists. Whether you’re managing symptoms with compression socks or just trying to stay upright, know this: you’re not alone.
And if all else fails? There’s always the comforting embrace of a good pair of compression socks.
Further Reading & Resources:
Dysautonomia International – Research, advocacy, and patient resources.
The Ehlers-Danlos Society – Everything EDS, from research to management tips.
POTS UK – UK-based support and information for POTS patients.
EDS Support UK – Community and guidance for living with EDS.
Stay salty, my friends.
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