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Living with Ehlers-Danlos Syndrome

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23 Dec
Living with Ehlers-Danlos Syndrome
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Living with Ehlers-Danlos Syndrome

Practical Strategies for Day-to-Day Life (Including POTS & Dysautonomia)

Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder. Because connective tissue helps support joints, skin, and other structures throughout the body, EDS can affect far more than just flexibility. Many people experience joint hypermobility, pain, and fatigue—but it’s also common to have symptoms that feel “system-wide,” especially related to heart rate, blood pressure, digestion, temperature regulation, and sleep.Here are some key tips for living with Ehlers-Danlos Syndrome.
A common overlap is POTS (Postural Orthostatic Tachycardia Syndrome). POTS is a type of autonomic dysfunction (also called dysautonomia) that can make standing, walking, showering, or even sitting upright for long periods feel exhausting.

Dysautonomia symptoms (autonomic dysfunction)

Dysautonomia is a group of disorders that affect the autonomic nervous system (ANS). Many people with EDS or hypermobility spectrum disorders (HSD) also have a type of dysautonomia. Common signs include:
  • Tachycardia (fast heart rate)
  • Hypotension (low blood pressure)
  • Dizziness/lightheadedness (sometimes near-fainting or fainting)
  • Gastrointestinal dysmotility (trouble moving food through the digestive system)
  • Disturbed bladder function
  • Temperature and sweating dysregulation
  • Sleep problems
The takeaway: if you’re dealing with EDS and symptoms like dizziness, racing heart, heat intolerance, or GI disruption, it’s worth discussing dysautonomia/POTS with your healthcare team. Connecting the dots can help you build a more effective plan.

What Helps: Practical, High-Impact Habits

Finding the correct shoes (and supporting “flat feet”)

Foot stability influences the entire chain—ankles, knees, hips, back—and it matters even more when joints are lax.
  • Shoes that are too big or too wide for narrow feet can allow for excess movement, which increases pain and fatigue.
  • Shoes with a too-tight toe box can create unnecessary pressure and pain (especially with wider feet).
  • If you have flat feet/low arches, inserts or orthotics may help improve alignment, reduce strain, and enhance comfort while walking and standing.
A good shoe fit is one of the simplest upgrades you can make—especially if you’re trying to reduce flares without “doing more.”

Drinking enough water and increasing salt intake (when medically appropriate)

For many people with POTS, core self-management strategies include increasing fluids and increasing salt to support blood volume and reduce orthostatic symptoms. This is not one-size-fits-all—if you have high blood pressure, kidney concerns, or other medical issues, you should confirm targets with your provider.
Practical tips that tend to work:
  • Spread fluids across the day (not all at once)
  • Pair hydration with salt as directed (water alone may not be enough for some)
  • Be consistent on “good days,” not just during flares.

Wear compression garments

Compression can help reduce blood pooling and improve symptoms for some people with POTS/dysautonomia. Many patients do better with waist-high and/or abdominal compression rather than socks alone. This is especially useful for long-standing days, travel, errands, and events where you can’t easily sit down.

Prioritize sleep (good sleep hygiene)

Sleep impacts pain sensitivity, autonomic regulation, and recovery. A simple routine matters more than perfection:
  • Keep a consistent bedtime and wake time.
  • Avoid caffeine later in the day.
  • Avoid large meals close to bedtime.
  • Keep the bedroom cool, dark, and comfortable.
  • Use the bed for sleep (not scrolling)
  • Limit technology right before bed.
If sleep is consistently poor, bring it up. Addressing sleep can move the needle across multiple symptoms at once.

Supports That Make Life Easier (Without “Over-Bracing”)

Braces, splints, and mobility aids

Support tools can be a smart part of living with EDS—especially when you use them strategically.
Examples:
  • A wrist or thumb support for cooking, writing, or computer work
  • Finger splints for unstable joints during grip tasks
  • A mobility aid for longer outings to reduce flare intensity and improve independence
The goal isn’t to brace everything forever. It’s to reduce strain, prevent repeated micro-injuries, and keep you functional while you build strength and stability in therapy.

Activity pacing and energy conservation

EDS + dysautonomia often creates a “push-crash” cycle: you feel decent, do too much, then pay for it.
Pacing looks like:
  • Breaking tasks into smaller chunks
  • Scheduling rest before you’re wiped out
  • Alternating between heavier and lighter activities
  • Sitting for tasks that don’t require standing (prep food seated, fold laundry seated, etc.)
  • Planning errands to minimize time upright and time in the heat
Done well, pacing isn’t “doing less.” It’s doing what matters, more consistently.

Safe Exercises: What to Start With

Exercise matters—but with EDS and/or POTS, how you start is everything. Many people do best with an approach that prioritizes:
  • Joint stability and strength (controlled range of motion)
  • Low symptom provocation (especially early on)
  • Gradual progression over weeks/months (not days)

If you have POTS symptoms: start more horizontal

A common strategy is starting with recumbent or seated conditioning and slowly progressing toward upright exercise as tolerance improves.
Safe starting options often include:
  • Recumbent bike
  • Rowing machine (as tolerated—form matters)
  • Swimming or water walking (buoyancy reduces joint load)
  • Seated stepper
  • Gentle, structured strengthening (bands/light weights), focusing on:
    • Core stability
    • Glutes/hips
    • Shoulder blade/scapular stabilizers
    • Hand/wrist stability work

What to avoid early (for many people)

  • Aggressive stretching (especially into end ranges)
  • High-impact plyometrics/jumping during flare periods
  • Fast ramp-ups in intensity or volume
  • “All-or-nothing” workouts that trigger symptom spikes for days
This is where OT and PT can be a major advantage: you get the right exercise dose, matched to your symptoms and goals.

When to ask for more help

If you’re experiencing frequent fainting, chest pain, severe shortness of breath, or rapidly worsening symptoms, treat that as a medical issue—not something to power through.
For day-to-day function, an OT/CHT can help you:
  • Identify triggers in work/home routines and modify them.
  • Choose braces/splints that actually fit your needs.
  • build joint protection habits and task strategies
  • develop symptom-smart strengthening plans that don’t flare you up

Sources

EDS

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