EDS Is More Than Being Bendy

The 8 Simplified C’s of EDS Care

When most people hear “Ehlers-Danlos Syndrome” or “EDS,” they think of someone who is very flexible, “double-jointed”, or “bendy.” But if you live with EDS, hypermobile EDS, hypermobility spectrum disorder, or suspected hypermobility, you probably know the truth:

• EDS is not just flexibility.
• It may be the shoulder that slips when you reach overhead.
• The knee that feels like it twists when you walk.
• The neck that feels unstable, unsafe, or like you have to hold it up all day.
• The dizziness that shows up when you stand too long.
• The fatigue that hits after a normal day.
• The stomach symptoms that no one connects to the rest of the picture.
• The pain that moves around and confuses everyone.
• The flare that happens after an exercise plan that was supposed to help.
• The frustration of being told, “Your imaging looks normal,” when your body clearly does not feel normal.

At Marino Physiotherapy, we work with patients who have complex, multi-system, hard-to-explain symptoms every day. Many of our patients come to us after they have already tried traditional physical therapy, seen multiple providers, or been told that nothing is seriously wrong. We are here to say this clearly:

Your symptoms are real.

Your story matters.

And EDS care requires a more comprehensive plan than “just strengthen and stretch more.”

EDS Is a Connective Tissue Condition, Not Just a Joint Problem

The Ehlers-Danlos Syndromes are connective tissue disorders. Connective tissue helps support and organize many parts of the body, including joints, skin, fascia, blood vessels, organs, muscles, and nerves. That is why EDS can show up in ways that do not always look like a simple orthopedic problem.

Yes, joint hypermobility may be part of the picture. But the bigger issue is often not just how far a joint can move. The bigger issue is whether the body can control that motion, tolerate load, regulate blood flow, recover after activity, calm the nervous system, and function in daily life without constant flares.

This is why many people with EDS feel misunderstood. They are not simply “too flexible.” They often deal with a body that has to work harder to maintain stability, manage symptoms, and remain functional.

Why “Normal” on Imaging Does Not Always Mean “Nothing Is Wrong”

One of the most frustrating experiences for people with EDS or hypermobility is being told that everything looks normal.

• Normal X-ray.
• Normal MRI.
• Normal labs.
• Normal exam.

All while the patient still feels unstable, exhausted, dizzy, painful, or unable to trust their body.

This happens because many EDS-related problems are not always obvious on standard imaging. Instability may be intermittent. Symptoms may only show up in certain positions. A joint may look fine at rest but fail to control load during walking, stairs, lifting, sitting, exercising, or reaching overhead.

A high-level physical therapy evaluation does not stop at “What does the image show?” It asks:

• What happens when your body has to function?
• What movements feel unsafe?
• What positions trigger symptoms?
• What helps you recover?
• What makes you flare the next day?
• What systems may be affecting your ability to tolerate treatment?
• What is your individual biomechanical status?

This is where EDS-informed care becomes different.

Why Standard Physical Therapy May Not Be Enough

Many people with EDS have been told some version of:

• “Just strengthen.”
• “Just stretch.”
• “Your joints are loose, so you need to tighten everything.”
• “Your muscles are tight, so you need to stretch more.”
• “Your imaging is normal, so nothing is wrong.”
• “Your symptoms are probably anxiety.”
• “You are too young to hurt this much.”

The problem is that EDS does not always respond well to generic care. If a muscle is tight because it is protecting an unstable area, aggressive stretching may make the body feel less safe. If exercise is progressed too quickly, the patient may flare or crash. If the plan ignores dizziness, fatigue, POTS-like symptoms, GI symptoms, poor sleep, pain sensitivity, or slow recovery, the program may technically be “good exercise” but completely wrong for that individual patient.

EDS care needs to be specific.

It needs to ask better questions.

It needs to look at more than one joint.

It needs to respect the whole person.

It needs to consider why the body is guarding, why symptoms fluctuate, and why the same activity may feel manageable one day
and impossible another day.

That is why we use a simple framework to help patients understand a very complex condition.

It does not matter that the healthcare provider understands your individual presentation unless YOU understand it

Have you been educated on your individual presentation and condition, what to look for, how to manage it, and how to get the resources you need?

The 8 Simplified C’s of EDS

At Marino Physio, we have extensive experience working with complex conditions. We have found that patients are more successful when we break these down into more digestible and simplified components. Yes, EDS is complex, but your plan should not feel impossible or overwhelming. Having an EDS-informed advocate and care provider on your side to guide you through the process is the most effective way to ensure your success in managing what can often be a challenging situation.

To help you with this, we have developed the 8 Simplified C’s of EDS. These are a patient-friendly roadmap for understanding the bigger picture of EDS, HSD, and hypermobility-related symptoms, as well as laying out the foundation for self-management and self-advocacy.

1. Connective Tissue
2. Control
3. Calm
4. Circulation
5. Chemistry
6. Capacity
7. Confidence
8. Care Team

Let’s break them down with a short overview of each. If you have questions on any of these areas, we recommend setting up a consultation with one of our EDS specialists.

1. Connective Tissue: Why EDS Affects More Than Joints

EDS is a connective tissue condition, which means symptoms can show up in many systems of the body.

This may include:

• Joint hypermobility
• Joint instability
• Subluxations or dislocations
• Chronic pain
• Soft tissue injuries
• Easy bruising
• Skin sensitivity or fragile healing
• Headaches
• TMJ issues
• Pelvic floor concerns
• Digestive symptoms
• Fatigue
• Dysautonomia symptoms like dizziness, heart racing, or heat intolerance

This is why EDS can feel confusing. Symptoms may not stay in one place. They may seem unrelated. They may not show up clearly on standard imaging or routine testing. But “not obvious” does not mean “not real.”

A high-level EDS physical therapy evaluation looks at the pattern, not just the pain; at the person, not just the body part.

2. Control: Hypermobility Is Not the Same as Instability

Being flexible is not the same as being unstable.

Many people with EDS can move far into a position, but they may struggle to control that position. This can create symptoms like:

• Slipping
• Shifting
• Catching
• Clunking
• Twisting
• Giving way
• Feeling “out of place”
• Not trusting a joint

The goal is NOT to make your body rigid.

The goal is to help your body find better control.

At Marino Physiotherapy, we often look at how your joints, muscles, fascia, breathing, balance, posture, and nervous system work together. We want to know why your body chose its current strategy and what strategy would help it feel safer, stronger, and more efficient.

For many patients, this means building better mid-range control, improving proprioception, reducing over-bracing, and teaching the body how to distribute load more effectively.

3. Calm: Flares Are Information, Not Failure

If you have EDS, you may have been through the frustrating cycle of trying to do the “right” thing, only to flare afterward.

• You start exercising. You crash.
• You stretch. You feel worse.
• You push through. You pay for it the next day.
• You rest completely. You feel weaker.
• You try to explain it. No one seems to understand.

A flare does not mean you failed. A flare means your body exceeded its current tolerance.

The question is not, “Why can’t I do this?”

The better question is, “What dose, position, pace, or recovery strategy does my body need right now?”

EDS-informed care should help calm the system, not scare it. This may include gentle hands-on care, breathing strategies, pacing, supported exercise positions, education, nervous system regulation, and careful progression. The goal is to help your body feel safer with movement instead of constantly bracing against it.

4. Circulation: POTS, Dysautonomia, and Exercise Tolerance

Many people with EDS or hypermobility also experience symptoms of dysautonomia or POTS. This may feel like:

• Dizziness or lightheadedness
• Heart racing when standing
• Feeling faint
• Heat intolerance
• Brain fog
• Heavy legs
• Shortness of breath
• Exercise intolerance
• Symptoms after showers, stairs, meals, or long appointments

This matters because exercise is not just about strength. Your body also has to regulate blood pressure, heart rate, temperature, and recovery.

If your autonomic nervous system is struggling, upright exercise may not be the right starting point. Some patients need to begin with reclined, seated, supported, or very low-dose exercise before progressing to more upright activity.

This is one of the reasons many people with EDS fail traditional exercise programs. The program may be too vertical, too intense, too fast, or too rigid for their current system.

A better plan starts where your body actually is.

5. Chemistry: When Your System Is More Reactive

Some people with EDS also deal with symptoms that suggest a more reactive internal system. This may include:

• GI symptoms
• Reflux
• Nausea
• Bloating
• Constipation or diarrhea
• Food sensitivity
• Medication sensitivity
• Fragrance sensitivity
• Flushing
• Itching or hives
• Feeling worse with heat, stress, poor sleep, or hormonal changes

As physical therapists, we are not diagnosing these conditions. But we absolutely need to know about them because they affect your tolerance to treatment and how we structure and individualize your plan.

If you have not eaten enough, slept enough, hydrated well, or recovered from your last activity, your threshold may be lower that day. If your system is irritated, your body may tolerate less pressure, less exercise, less heat, less upright time, or less stimulation. If you are struggling to get adequate nutrition due to GI complications, you may struggle to have the resources to heal and maximize efficiency of muscular control – akin to asking a contractor to build a wall but not providing the actual bricks or mortar.

This is not weakness.

This is physiology.

EDS care needs to respect the fact that your body’s tolerance can change day to day.

6. Capacity: Building More Life Tolerance

The goal of EDS care is not just to reduce pain. The bigger goal is to build capacity. Capacity means your body can handle more of what matters with less fallout. This might mean:

• Standing long enough to cook dinner
• Walking through a store without crashing
• Getting through work with fewer symptoms
• Exercising without fear
• Playing with your kids
• Traveling with less recovery time
• Climbing stairs with more confidence
• Returning to sport, dance, hiking, or the gym
• Participating in life instead of constantly calculating the cost

Building capacity requires the right progression. Not random exercises. ot pushing through every symptom. Not avoiding everything forever.

A high-level EDS plan builds consistency before intensity, control before complexity, and recovery before performance.

7. Confidence: Trusting Your Body Again

One of the hardest parts of EDS is losing trust in your body. When your joints surprise you, your symptoms move around, your body flares after simple activity, or providers dismiss your concerns, it is understandable to become fearful or discouraged. Confidence is not pretending everything is fine.

Confidence is knowing:

• What your body is doing
• What your warning signs mean
• What helps you recover
• How to move safely
• When to modify
• When to seek help
• How to build back step by step

Progress may not always mean, “I have no pain.”

Progress may sound like:

• “I recovered faster this time.”
• “I know what triggered that flare.”
• “I can calm it down.”
• “I trust my knee on stairs.”
• “I can exercise without guessing.”
• “I can do errands without crashing.”
• “I have a plan.”

That is real progress.

8. Care Team: You Should Not Have to Figure This Out Alone

Because EDS can affect multiple systems, many patients need a care team. That does not mean you need every specialist. It means you need the right support for your symptoms, safety, and goals.

Your EDS support team may include:

• EDS-informed physical therapist
• Primary care provider
• Genetics, rheumatology, or knowledgeable diagnosing provider
• Cardiology or autonomic/POTS specialist
• Gastroenterology
• Allergy/immunology for MCAS-type symptoms
• Neurology or headache specialist
• Pelvic floor PT, urogynecology, or urology
• Registered dietitian or nutritionist
• Mental health provider familiar with chronic illness
• Orthopedics, sports medicine, pain management, occupational therapy, dentistry/TMJ, or ENT as needed

Self-advocacy is also part of care. Self-advocacy does not mean being difficult. It means understanding your presentation, helping your providers understand the pattern, understanding which providers are best equipped to help meet your needs, and knowing how to best communicate your issues in order to get the best care.

You may need to say:

• “Here is what I notice in my body.”
• “These are the symptoms that most limit my life.”
• “What are we trying to rule out?”
• “What should I do if this flares?”
• “Can we adjust the plan to match my tolerance?”
• “Who else should be on my care team?”

At Marino Physiotherapy, we help patients connect the dots so their care feels less scattered and more strategic.

Is This You?

You may benefit from an EDS-informed physical therapy evaluation if:

• You have been told your imaging is normal, but you still do not feel normal
• Your symptoms fluctuate from day to day
• You feel unstable, loose, twisted, stuck, or out of place
• You have pain in multiple areas
• You flare after standard exercise or traditional PT
• You have POTS, dysautonomia, dizziness, or heat intolerance
• You have GI symptoms, fatigue, brain fog, or widespread sensitivity
• You avoid activity because you are afraid of what your body will do
• You have been told it is “just anxiety,” but your body feels physically out of control
• You want a plan that is specific to your body, not a generic hypermobility handout

If you nodded along to even one of these, you are exactly the kind of patient we love helping.

Why Work with Marino Physiotherapy for EDS and Hypermobility?

EDS care requires more than a list of exercises. It requires advanced clinical reasoning, careful listening, precise assessment, and the ability to adapt the plan when the body does not respond in a textbook way.

At Marino Physiotherapy, we specialize in complex orthopedic and multi-system presentations. We look at how your joints, muscles, fascia, nervous system, autonomic tolerance, movement patterns, recovery, other systems, and daily demands interact.

We are not here to tell you that everything is simple; we are here to help simplify the path forward.

Our goal is to help you:

• Understand your body
• Calm flares
• Improve joint control
• Build strength safely
• Increase activity tolerance
• Reduce fear
• Improve confidence
• Coordinate care when needed
• Get back to the parts of life that matter most

Ready to Move Forward?

If you have EDS, suspected EDS, HSD, generalized hypermobility, or complex symptoms that have not responded to traditional care, you do not have to keep guessing. A high-level EDS-informed evaluation can help identify what is driving your symptoms, what needs to be modified, what can be progressed, and what kind of support team may help you move forward.

Call or text Marino Physiotherapy at 865-236-0340 to schedule an EDS-focused evaluation or ask about our upcoming EDS workshops.

We see the whole person, not just the painful joint.

Still researching whether this sounds like you?

These are the questions we hear most often from patients with EDS, HSD, and suspected hypermobility.

Frequently Asked Questions About EDS, hEDS, Hypermobility, and Physical Therapy

What is EDS?

Ehlers-Danlos Syndromes are connective tissue conditions that can affect joints, skin, fascia, blood vessels, organs, and other body systems. Many people with EDS experience joint hypermobility, instability, pain, fatigue, and symptoms that involve more than one system.

What is hypermobile EDS?

Hypermobile EDS, or hEDS, is the most common type of EDS. It is often associated with generalized joint hypermobility, joint instability, chronic pain, fatigue, gastrointestinal issues, dysautonomia, headaches, and other related symptoms.

Is hypermobile EDS diagnosed with a genetic test?

Currently, hypermobile EDS is diagnosed clinically. Other types of EDS may have known genetic markers, but there is not currently one laboratory or genetic test that diagnoses hEDS.

What is the difference between EDS and HSD?

HSD stands for Hypermobility Spectrum Disorder. HSD may be diagnosed when joint hypermobility is causing problems but the person does not meet criteria for hEDS or another connective tissue disorder. People with HSD still deserve thoughtful care, especially when hypermobility causes pain, instability, injury, poor proprioception, or loss of function.

Can physical therapy help EDS?

Yes, but the type of physical therapy matters. EDS-informed PT is not just generic strengthening or stretching. It should consider joint control, proprioception, pacing, autonomic tolerance, pain sensitivity, recovery, and the patient’s functional goals.

Why do I flare after exercise?

A flare after exercise may mean the activity exceeded your current tolerance. That could be related to load, position, intensity, duration, recovery, sleep, hydration, autonomic symptoms, or nervous system sensitivity. A skilled EDS-informed clinician can help adjust the starting point and progression.

Should I stretch if I have EDS?

Not always. There is a difference between a muscle that is TIGHT versus a muscle that is ACTIVELY TIGHTENING. Some tightness is the muscle holding tone to protect the joint from excessive or uncontrolled forces. If a muscle is guarding because a joint does not feel stable, aggressive stretching may make symptoms worse. Many patients need better control, load sharing, motion distribution, and nervous system calming before stretching is helpful or effective.

What kind of physical therapy is best for EDS?

The best physical therapy for EDS is individualized. It should start with your story, your goals, your symptom pattern, your flare response, your movement control, and your tolerance. The plan should build stability, strength, confidence, and capacity without repeatedly pushing you into crashes. It should also accommodate the multitude of related issues that may be present to some degree.

What makes Marino Physiotherapy different?

Marino Physiotherapy specializes in high-level, one-on-one care for complex conditions. We are known for advanced clinical reasoning, whole-person assessment, and individualized plans for patients who have not fit neatly into standard treatment approaches.

How do I know if I need an EDS-informed PT evaluation?

If your symptoms are complex, recurrent, multi-system, or have not improved with standard care, an EDS-informed evaluation can help you understand your pattern and identify a safer, more specific path forward.

What makes Marino Physiotherapy different for EDS, HSD, and hypermobility?

Marino Physiotherapy specializes in high-level, one-on-one care for complex conditions. We are known for advanced clinical reasoning, whole-person assessment, and individualized plans for patients who have not fit into standard treatment approaches. We become your guide by the side and are here for you through the journey.

Complex patients do not achieve all of their goals in 3-4 weeks, despite most courses of traditional PT only being for a short period before care is labeled as “failed” or they kick you out. This is not effective care!! These patients need guided education, implementation of protective and effective strategies, and occasional modification of their management strategies in response to continued effectiveness, adjacent health issues, and life circumstances. For example, a previous patient of ours was struggling with both her new EDS diagnosis and being able to safely and comfortably enjoy a dance class and her desk job. We assessed her individual needs and recommended an intensive initial twice a week program for 6 weeks to calm both the system and her pain. This course of care also provided comprehensive education and hands-on work, as well as the crafting and adjusting of her management plan and a PT-first-aid kit for self-relief of breakthrough issues. Next, her phase two plan consisted of more of a consultation basis where we continued monthly check-ins so that we could assist with any intermittent issues that popped up along the way. Once she felt confident with self management and was back to dancing, she did check-ins 1-2 times a year as needed until a pregnancy changed a lot of her physical presentation. At that point we had a short 3-week course of care to get her out of pain to have a successful pregnancy and delivery, then later provided postpartum training so she could safely use her “new body” in navigating the joys (and physical challenges) of motherhood. This comprehensive approach enables us to pick up on small issues before they become big issues, and to be a resource for you in the years to come.

We do not reduce EDS care to “just strengthen” or “just stretch.” We look at connective tissue, control, calm, circulation, chemistry, capacity, confidence, education, and the right care team.

Most importantly, we help patients stop guessing. We help you understand what your body is doing, why symptoms may be happening, what can be modified, what can be progressed, and how to move forward with a plan that respects both your complexity and your potential.

Have more questions? Call or text us today and experience the Marino difference for yourself. We are here to help!

865-236-0340

About the Author: Ashley Dziendziel, PT, DPT, BS Exercise Science, COMT

Dr. Ashley Dziendziel grew up in Texas and earned her Bachelor of Science in Exercise Science from Brigham Young University, where she competed as a Division I track and field athlete specializing in the high jump. She went on to earn her Doctor of Physical Therapy degree from South College. Since graduating, she has completed her Certified Orthopedic Manual Therapist (COMT) certification and is beginning her fellowship training in orthopedic manual therapy. With a passion for orthopedic rehabilitation and movement-based care, Dr. Ashley combines her athletic background with advanced manual therapy skills to help patients return to the activities they enjoy. Before becoming a physical therapist, she worked as a NASM Certified Personal Trainer for seven years, further strengthening her expertise in exercise and performance.