Living with Ehlers-Danlos Syndrome (EDS) and chronic pain isn’t just about managing symptoms at medical appointments. It’s about getting through mornings, workdays, school, errands, and bedtime in a body that often feels unpredictable.
At TCS in Camp Hill, we work every day with kids, teens, and adults who live with hypermobility, EDS, POTS, and chronic pain. Our goal with this article is to validate your experience, share practical strategies, and offer language you can use with providers, schools, and loved ones.
What EDS-Related Chronic Pain Can Feel Like Day to Day
EDS and hypermobility can show up very differently from person to person, but some common everyday experiences include:
Widespread joint and muscle pain that changes from day to day
Frequent subluxations or sprains from movements that look “small” to others
Deep fatigue that doesn’t match how much you “did” that day
Headaches, GI discomfort, dizziness, or POTS symptoms layered on top of pain
Sensory overload from lights, sounds, clothing, or touch when your nervous system is already working overtime
Many people describe feeling like they’re constantly “on guard” in their own body—watching every step, every reach, every twist, because they’ve learned that even everyday movements can lead to a pain flare.
Why Pain Feels So Big (Even When Imaging Looks “Normal”)
One of the most frustrating experiences for people with EDS is being told, “Your tests look fine,” or “We don’t see anything that explains this much pain.”
Pain is not only about tissue damage. It’s also about how your nervous system has learned to protect you.
Over time, repeated injuries, medical trauma, and feeling dismissed can teach your brain and body that you are never fully safe. Your nervous system may:
Turn up the “volume knob” on pain signals
React faster to small changes in movement, temperature, or pressure
Stay in a state of high alert (fight/flight/freeze/fawn)
This doesn’t mean the pain is “in your head.” It means your body has become very good at trying to protect you. Occupational therapy using Pain Neuroscience Education (PNE) and gentle, targeted movement can help turn that volume down over time.
Everyday Life with EDS and Chronic Pain
Mornings: Getting Out of Bed Is a Full-Body Project
For many people with EDS, mornings are the hardest part of the day. Common challenges include:
Stiffness, achiness, or feeling like your body is “made of concrete”
Dizziness when sitting up (especially with POTS)
Needing extra time to brace joints, stretch, or use supports before moving
Helpful ideas:
Slow transitions: Roll to your side, sit up gradually, and pause before standing.
Hydration and salt (as medically appropriate): Many people with POTS or dysautonomia feel better when they hydrate early. Keeping your water bottle on your nightstand can help you hydrate before you even get out of bed.
Gentle movement first: Small, supported movements in bed can help your nervous system and joints wake up gently and safely.
School, Work, and Daily Responsibilities
Holding a job, attending school, parenting, or caregiving while living with chronic pain is a lot.
Common everyday barriers:
Sitting or standing in one position for too long
Bright lights, noise, or crowded spaces increasing pain and fatigue
Limited access to rest breaks, flexible seating, or movement options
Feeling misunderstood by teachers, employers, or coworkers
Possible supports:
Flexible seating: Chairs with armrests, cushions, footrests, or the option to stand or move
Scheduled movement breaks: Short, frequent breaks can be more helpful than one long break
Written accommodations: 504 plans, IEPs, or workplace accommodations can formalize what you need
Energy budgeting: Choosing one or two “must-do” tasks per day and letting other things wait, timing high-energy tasks with the time of day that you feel the best
Evenings: The Crash (and the Guilt)
By late afternoon or evening, many people with EDS feel like they’ve hit a wall. Pain may spike, fatigue sets in, and sensory tolerance drops.
You might notice:
Needing to cancel plans more often than you’d like
Feeling guilty about not doing “enough” with your kids, partner, or friends
Struggling to find a comfortable position to rest or sleep
Gentle reminders:
Rest is not failure; it’s part of your medical care.
You are not lazy; you are living in a body doing complex work all day long.
Planning “low-energy connection” options (like watching a show together, reading side by side, or texting) still counts as real connection.
Practical Strategies OT Can Offer for EDS and Chronic Pain
Occupational therapy (OT) for EDS and chronic pain is about helping you do the things that matter most to you—your everyday occupations—while respecting your body’s limits.
Some ways an OT with EDS and chronic pain training can help:
Joint protection and body mechanics that are tailored for hypermobile bodies (not just “sit up straight” or “engage your core”)
Activity pacing and planning so you don’t go from “I feel okay” to “I can’t move for three days”
Nervous system regulation strategies that are sensory-friendly and trauma-informed
Pain Neuroscience Education (PNE) to help you understand why pain behaves the way it does
Environmental modifications at home, school, or work
Collaboration with your medical team so your supports are coordinated
At TCS, our goal is to help clients understand their bodies, build trust with themselves, and expand what’s possible in daily life.
Supporting Kids and Teens with Hypermobility and/or Chronic Pain
For children and teens, hypermobility and chronic pain can affect:
School attendance and participation
Friendships and social activities
Play, sports, and hobbies
Sleep, appetite, and mood
Parents often tell us they feel torn between encouraging independence and protecting their child from pain or injury.
An OT can help your family:
Break tasks into smaller, more manageable steps
Find adaptive tools (like writing supports, seating options, or mobility aids)
Build routines that include rest on purpose instead of only when things fall apart
Communicate with schools and providers in a way that centers your child’s safety, dignity, and autonomy
- Incorporate targeted strengthening and proprioception into play-based activities, helping your child get stronger and safer while having fun
Getting Support for EDS and Chronic Pain in Central Pennsylvania
TCS is an autistic-led, neurodiversity-affirming, trauma-informed therapy practice in Camp Hill, in the Harrisburg, PA area. We offer specialized support for children, teens, and adults with hypermobility, EDS, POTS, and chronic pain.
We offer:
1:1 occupational therapy for adults and pediatrics
Support for nervous system regulation and pain management
A fully accessible, sensory-friendly, home-like clinic space
Telehealth options throughout Pennsylvania
If you or your child are living with hypermobility, EDS or chronic pain and you’re looking for support that truly understands, you can learn more about our services here.
You are not being dramatic. You are not imagining it. Your pain is real, and you deserve care that honors your whole self.