Lifestyle Habits: The Unsung Hero of Managing EDS in the Maintenance Phase

Once the initial whirlwind of diagnosis, specialist appointments, and urgent symptom management starts to settle, many EDS patients enter what’s known as the maintenance phase. This phase isn’t about fixing everything—it’s about learning how to live well within your limits, prevent setbacks, and build habits that support your body and mind over the long haul.

Unlike emergency treatments or medications, lifestyle habits are daily tools that help you stay more balanced, reduce flare-ups, and feel more in control. These habits are highly personal, built over time, and often involve a mix of physical care, emotional regulation, and environmental adjustments.

Why Lifestyle Habits Matter for EDS

• EDS affects multiple systems—musculoskeletal, gastrointestinal, cardiovascular, and neurological—which means no single treatment will cover it all.

• Lifestyle strategies can help you minimize triggers, build strength gradually, and recover faster when flares do occur.

• Habits put you back in the driver’s seat, making care less reactive and more sustainable.

Lifestyle Habits to Consider in the Maintenance Phase

Daily Movement (With Boundaries)

• Gentle stretching or mobility work

• Physical therapy home exercises

• Aquatic therapy or water aerobics

• Low-impact movement like yoga, tai chi, or Pilates for hypermobility

• Walking or recumbent biking for circulation and endurance

• Resistance band strengthening for joint support

Pacing & Energy Management

• Use a planner or pacing app (like Mighty or CareClinic)

• Try the Battery Life over Spoons approach

• Practice task chunking and build in rest breaks

• Avoid the “push-crash” cycle by honoring body signals early

• Schedule “buffer” days after high-energy activities

Pain Management Routines

• Ice/heat therapy rotation

• Topical pain relief (lidocaine, arnica, menthol rubs)

• Magnesium baths or compresses

• TENS unit or PEMF mat (with provider guidance)

• Myofascial release tools like foam rollers or massage balls

Sleep Hygiene

• Weighted blankets (if tolerated)

• Cervical support pillows or wedge cushions

• Sleep tracking apps (like Pillow or Sleep Cycle)

• Limit screen time and use blue light filters in the evening

• Calming bedtime rituals like warm tea, aromatherapy, or guided meditation

Nutrition & Hydration

• Electrolyte drinks for POTS/dysautonomia

• Small, frequent meals for gastroparesis

• Anti-inflammatory foods (berries, leafy greens, omega-3s)

• Keep a food-symptom journal (apps like Cara Care or MySymptoms)

• Work with a GI-aware dietitian if possible

Nervous System Regulation

• Breathwork (try the 360 Breathing, Resonant Breathing or Box Breathing method)

• Vagus nerve stimulation tools or techniques (like humming or cold face immersion)

• Somatic therapy or trauma-informed movement

• Meditation or apps like Insight Timer, Calm app

• Emotional regulation strategies to reduce sensory overwhelm

Environmental & Daily Life Adjustments

• Use assistive tools (reacher, jar opener, ergonomic furniture)

• Adapt your home setup to avoid repetitive strain

• Plan errands for low-traffic, low-stress times

• Break household chores into tiny, manageable chunks

• Use adaptive clothing, braces, or orthotics as needed

Helpful Resources to Explore

• Zebra Club app by Jeannie Di Bon – movement for hypermobility

• Invisible Illness Communities on Mighty Networks, Facebook or Reddit

• Curable App – mind-body strategies for chronic pain

• Books:

  • Holding It All Together When You’re Hypermobile by Christie Cox

  • Disjointed by Diana Jovin

  • The Body Keeps the Score by Bessel van der Kolk

• Podcasts:

  • Hypermobility Happy Hour

  • Bendy Bodies

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Lifestyle habits aren’t a backup plan—they’re the front line of long-term care. In the maintenance phase of EDS, building a personal toolkit of routines and recovery strategies can help you move from survival mode into something steadier, more empowered, and even joyful.