Pain 101
Things to remember:
All pain is real pain and not “all in your head.”
Sometimes we just need validation that pain has a profound impact on our quality of life.
We need education on ways in which pain is anatomical, physiological and exacerbated by social/emotional conditions.
The more pain you have the lower the threshold for feeling pain will get.
The longer you can go with less pain the higher the threshold will be before you feel pain.
The goal is to “de-sensitize” the nervous system that is actually experiencing real pain and turn down the volume on the pain to make it more tolerable.
Why My Muscles Feel Tight Even Though I’m Hypermobile
If you have Ehlers-Danlos syndrome (EDS), it can feel confusing to be told you’re “hypermobile” while your body feels stiff, tense, or painfully tight. But in EDS, this combination is not a contradiction—it’s expected.
In EDS, ligaments and joint capsules don’t provide firm, passive support. To keep joints from slipping, shifting, or moving too far, your body relies heavily on muscles for stability. Over time, many muscles stay “on” almost constantly to protect unstable joints. Muscles that don’t get a chance to fully relax become fatigued, sore, and prone to spasm, which creates the tight, achy feeling many people with EDS experience [Castori 2017; Engelbert 2017].
This tightness isn’t a flaw, poor posture, or something you’re doing wrong. It’s your body’s protection strategy—an attempt to create stability when passive support is unreliable.
Problems often arise when treatment focuses on stretching these muscles before joints feel safe and supported. Stretching may feel relieving in the moment, but it can remove the very support your body was relying on, leading to increased pain, instability, or flares afterward. This is why many people with EDS feel worse—not better—after traditional stretching-based approaches [Rombaut 2015; Celletti 2015].
In EDS, muscles usually don’t need to be forced to relax. They need the body to feel safer first. When joints are better supported and movement feels more controlled, muscles can finally begin to let go on their own.
Why Muscles End Up Doing Too Much
When fragile ligaments and joint capsules can’t provide reliable support, muscles are forced to take over the job of stability. Muscles begin working earlier, harder, and for longer periods than they were designed to perform [Engelbert 2017]. (repeat of why don’t just go to the gym section?)
Over time:
Muscles fatigue quickly
Guarding and spasms develop
Pain increases, even without visible injury
This is why muscles in EDS can feel tight, sore, and overworked — not weak [Celletti 2015].
Common Places Tension Builds
Neck and shoulders
Many people with EDS carry a lot of tension in their neck and shoulders. These muscles work hard to support the head, especially when the upper neck is unstable. This can lead to neck pain, headaches, migraines, jaw tension, and shoulder tightness [Castori 2017; Rombaut 2015].
Jaw and face
Clenching the jaw is common, especially if the jaw joint is unstable. Some people do this without realizing it, particularly during stress or pain flares. Jaw tension can contribute to headaches, facial pain, and neck discomfort [Castori 2012].
Mid-back and ribs
Tension often builds through the mid-back and rib cage when the body is trying to stabilize above (neck) or below (hips). This can make breathing feel shallow or restricted and contribute to fatigue [Engelbert 2017].
Lower back
The lower back frequently tightens when the core isn’t providing steady support. Muscles may brace to prevent excessive movement, leading to stiffness and pain that doesn’t seem to improve with stretching [Celletti 2015].
Hips and pelvis
Hip muscles and the pelvic floor often work overtime to keep the body upright and balanced. This can show up as deep hip pain, pelvic tension, pelvic floor spasming or difficulty fully relaxing the muscles in the lower body [Castori 2017].
Hands, feet, and calves
Many people grip with their hands or tense their feet and calves without realizing it. Curling toes, locking knees, or holding tension in the lower legs is often the body’s way of trying to feel grounded and secure [Scheper 2016].
Why Stretching Often Makes Things Worse
In EDS, tight muscles are rarely tight because they’re short. They’re tight because they’re protecting unstable joints. When you stretch a muscle that’s guarding, you may feel temporary relief—but you also remove some of the support your body is relying on. This can lead to:
More instability
Increased pain later
A feeling of being “looser” but less safe
This is why many people with EDS feel worse after traditional stretching programs [Celletti 2015; Castori 2012].
How to Reduce Tension in a Safer Way
The goal isn’t to force muscles to relax. The goal is to help your body feel safe enough that muscles can relax.
What actually helps
1. Improve support first
When joints feel more supported, muscles don’t have to work as hard. This means starting with gentle stabilization and alignment—not aggressive strengthening [Engelbert 2017].
2. Learn where “neutral” is
Many people with EDS don’t have a clear sense of where their joints are. Learning what a neutral neck, shoulder, spine, or hip position feels like can reduce over-bracing [Rombaut 2015].
3. Use gentle release instead of deep stretching
Breathing, small controlled movements, and light soft-tissue techniques can calm tension without destabilizing joints [Stecco 2014].
4. Support breathing and posture
Shallow breathing and postural fatigue can drive upper-body tension. Improving rib cage movement and breathing patterns helps the whole system calm down [Engelbert 2017].
5. Go slowly and consistently
As stability improves over time, muscles naturally start to let go. This doesn’t happen overnight—but it does happen when the body feels supported.
6. Say to yourself…“feet equally balanced, pelvis level, shoulders tucked back, head over shoulders, soft ribs and face, level gaze…”
Patient Summary: Why I Feel So Tight
“Even though I’m hypermobile, my muscles often feel tight or sore. That’s not a contradiction—and it’s not my fault. My muscles stay tense because they’re working overtime to protect joints that don’t have strong ligament support.
This constant guarding is my body’s safety strategy. Muscles stay ‘on’ to keep me stable, which leads to pain and fatigue—not because they’re weak or short, but because they’re overworked.
This is why stretching doesn’t always help and can sometimes make things worse. Stretching muscles that are guarding can remove support my body relies on, leaving me feeling less safe.
What helps most is feeling supported first—finding neutral positions, improving alignment, and building stability slowly. When my joints feel steadier, my muscles don’t have to work as hard, and that’s when they can finally relax.”
Understanding Pain in EDS
Why Pain Builds Even When Nothing “Breaks”
Many people with hypermobile Ehlers-Danlos syndrome (hEDS) are told their imaging looks “normal,” even while their pain feels constant, widespread, or overwhelming. That mismatch can feel confusing and invalidating—but in hEDS, it is very common, and it makes sense.
Pain is not just a signal of injury. It is a protective response created by the brain. Its job is to warn you and keep you safe—not to perfectly measure damage (Clauw 2014; Woolf 2011).
In hEDS, pain usually doesn’t come from one clear injury. Instead, it builds gradually through everyday movement, repeated stress, and the body’s attempts to stay stable.
Pain Builds Through Repeated Stress
In hEDS, connective tissue doesn’t manage load the way it should. Ligaments and joint capsules are more elastic and provide less consistent support. Because of this, normal daily activities—like sitting upright, walking, or holding your head up—can place more strain on the body than expected.
Rather than a single injury, this creates many small stresses over time (“microtrauma”) (Castori 2012; Malfait 2017). These stresses can irritate:
Muscles
Tendons
Ligaments
Joint capsules
Nerves
Because this happens gradually, there is often no clear moment of injury—and nothing obvious on imaging (Castori 2017).
Instability and Muscles Overworking
When joints don’t stay well aligned, surrounding tissues are exposed to more strain. Even small, repeated shifts—especially in the shoulders, hips, spine, sacroiliac joints, and neck—can become painful over time.
To compensate, muscles stay active to provide stability. Many people with hEDS describe feeling like they are constantly “holding themselves together.”
Over time, this leads to:
Fatigue
Tightness or soreness
Muscle spasms
Pain without visible injury
This pain reflects overwork and protection, not weakness (Celletti 2015; Engelbert 2017).
The Nervous System Becomes More Sensitive
When stress, instability, and guarding continue over time, the nervous system adapts. It becomes more efficient at detecting potential threat—and more likely to produce pain. This is called sensitization (Woolf 2011).
As this happens:
Pain can feel stronger or more widespread
Symptoms may come and go unpredictably
Small triggers can feel overwhelming
Pain is still real—but it is now influenced more by how the system is processing information, not just by tissue stress (Clauw 2014).
Pain Threshold vs. Pain Tolerance
Why Pain Feels Early—but Flares Happen Later
Two important concepts help explain why pain can feel confusing in hEDS:
Pain Threshold (When Pain Starts)
This is the point where something first begins to feel painful.
In hEDS and chronic pain conditions, this threshold is often lower, meaning:
Pain starts more easily
Sensations feel intense sooner
The body reacts earlier to stress
………… vs ……….
Pain Tolerance (How Long You Push Through)
This is how much pain you can endure before stopping or changing what you’re doing.
Many people with hEDS have developed a high pain tolerance, meaning:
You continue despite discomfort
You push through symptoms
You’ve adapted to functioning with pain
Why This Combination Matters
When these two are combined—low threshold + high tolerance—a common pattern develops:
Pain begins early
You continue pushing through
The body stays under stress longer
The nervous system stays activated
Symptoms build and show up later
This helps explain why:
You may feel “okay” during activity
Pain shows up hours or a day later
Flares feel unpredictable
Pain, in this case, is not a real-time signal—it is often delayed feedback.
Pain Is Shaped by More Than Tissue
Pain is influenced by many factors beyond physical stress. The brain continuously evaluates:
Physical input (movement, load, instability)
Past experiences with pain or injury
Stress and emotional state
Fatigue and sleep quality
Environment and context
When the system perceives more threat, pain increases. When it feels safer and more predictable, pain decreases.
This is why:
Stress can increase pain
Fatigue can lower tolerance
Familiar, safe environments can reduce symptoms
Pain is not just about what is happening in your body—it is about how your body interprets and responds to what is happening.
Stress, Trauma, and System Sensitivity
Over time, repeated pain, unpredictability, and medical experiences can increase how sensitive the system becomes.
This can lead to:
A nervous system that stays on high alert
Faster activation of protective responses
Greater difficulty “turning down” pain
Autonomic dysfunction—common in hEDS—adds to this by affecting:
Heart rate and blood pressure regulation
Energy levels
Recovery capacity
(Eccles 2012)
All of this contributes to a system that is working harder, reacting faster, and recovering more slowly.
Why Imaging Often Looks “Normal”
Most imaging is done with the body at rest. It does not show:
How joints behave during movement
Subtle instability or misalignment
Muscle overwork
Nervous system sensitivity
Because of this, pain in hEDS is often functional and cumulative, not structural in a way imaging can easily detect (Castori 2017; Engelbert 2017).
A normal scan does not mean nothing is wrong. It means the problem exists in movement, repetition, and system response—areas most tests do not capture.
What This Means for Care
Pain in hEDS is real and explainable. It reflects a combination of:
Joint instability
Repeated small stresses
Muscle overuse
Nervous system sensitization
Fatigue and reduced recovery
Because of this, effective treatment focuses on:
Improving stability
Reducing unnecessary strain
Retraining movement
Supporting the nervous system
Building tolerance gradually
(Celletti 2015; Engelbert 2017; Tinkle 2017)
Patient Summary
“My pain doesn’t come from one big injury—it builds over time. My joints aren’t always well supported, my muscles work constantly to keep me stable, and my nervous system has become more protective. I may feel pain earlier than others, but I’ve also learned to push through it, which can lead to flares later. When I understand this, I can start working with my body—building support, pacing my activity, and creating safer movement so my symptoms become more manageable.”
The Pain Toolbox
Physiological quieting
Happy baby
Child’s pose
Tapping
Earthing
Massage
Acupuncture
Yoga
Sound therapy
Art therapy
Music therapy
Aroma therapy
Salt bath
Progressive Muscle Relaxation
Emotional release
Strength training
Aerobic exercise
Mantras
DailyOm classes
Journaling
Connection with friends
“Calm” app
Support groups
EMDR
Spiritual release
Prayer
Meditation
(Insight Timer, Head Space)
Nature
Community building
Meet with spiritual advisor
Other
Heating pad
Preferred hobbies
Hot liquid drink
Shower
Analgesic medication
Medical Marijuana
TENS
Splints
Tape
Compression
Assistive devices
Mobility aids
Infrared sauna
Float pool
ADDITIONAL RESOURCES
VIDEO: 6-minute video about chronic pain neuroscience: https://youtu.be/cLWntMDgFcs
WEBSITES: American Chronic Pain Association: https://www.theacpa.org, A site with multiple reliable links about chronic pain and pain management: http://www.instituteforchronicpain.org/resources/educational-links
ARTICLES: Clinical practice guidelines (appropriate for patients & providers) at: https://www.theacpa.org/pain-management-tools/resource-guide-to-chronic-pain-treatments/resource-guide-to-chronic-pain-management/ , A good description of central sensitization: https://www.painscience.com/articles/central-sensitization.php
APP: On-line pain self-management: https://www.liveplanbe.ca , Curable app is a self-directed pain self-management program: www.curablehealth.com
BOOKS: The Stress Management Workbook, by Ruth White, The Stress Reduction Workbook for Teens, by Gina Biegel, Guided Imagery for Healing Children and Teens, by Ellen Curran.