EDS Physical Therapy Delivered Differently

Physical Therapy for people with EDS is now available in the Chicago area in-person or via live, secure video conference! You finally found a place where you feel seen, understood and HEARD!

Wendy4Therapy understands how your body feels and what it takes to FEEL BETTER. With a visit to W4T, you will spend focused, one-on-one time with a licensed physical therapist who will listen to your health story with a trained and compassionate ear. Your therapist has hEDS, POTS, MCAS, a lifetime of disabling headaches and cranial-cervical instability...she gets it. You will leave W4T with a clear understanding of your symptoms and a concrete PLAN for how to find your own, personal road to wellness.

This is not your typical PT session because you are not a typical PT client.

 You may have Hypermobility Spectrum Disorder (HSD) or hypermobility form of Ehlers Danlos Syndrome (hEDS) if you experience…

Joints: Joint instability, sprains and strains, feel like you need to brace things just to keep them in place

Pain: Joint pain (particularly ankles, hips, knees, jaw, hands/fingers/wrist, jaw), neck pain, abdominal pain, frequent headaches, numbness/tingling in extremities, pain that doesn’t seem to correlate with imaging

Headaches: Persistent headaches resistant to treatment, migraines, neck pain, headaches that worsen with the position of your body

Dizziness: Dizziness when you stand up (orthostatic intolerance), poor balance and coordination, fainting or near fainting

Heart: Rapid heart beat, palpitations that come out of nowhere, difficulty regulating your body temperature, blood pooling in your legs, flushing of the skin

Fatigue: Disabling fatigue, need to rest more than your friends and family, difficulty standing still, difficulty maintaining upright position at a desk, poor posture because it requires a lot of energy to stand upright, poor sleep quality, difficulty tolerating social outings

Cognition: Brain fog, difficulty concentrating for long periods of time, memory loss, difficulty with word finding

GI/Digestion: Chronic constipation, pain after eating, bloating, poor gut motility and absorption, chronic nausea, food sensitivities/intolerances/allergies, difficulty gaining weight

Immune system: Sensitive skin, food sensitivities, flushing, hives, itching, inappropriate immune response to what should be benign

Psychosocial: Been discounted by friends/family/medical community, anxiety, depression, ADHD/ADD, unable to tolerate school or work, feel like you are in a constant state of “fight or flight,” considered suicide due to pain and fatigue, feel socially isolated, been told you are exaggerating your symptoms

Been diagnosed with: Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), dysautonomia, craniocervical instability, Chiari malformation, tethered cord, gastroparesis

Do you ever say to yourself or others…

I’m fine.

I’m used to the pain. It’s a part of my life.

I used to think it was cool to be bendy but now I wonder if that’s part of why I feel so icky now.

I have a lot of seemingly unrelated medical issues.

I used to be able to do that, but I can’t anymore because it hurts or I don’t have the energy

I have to stay close to home so I can eat, drink, rest, be near the toilet and avoid things that will likely trigger and flare my symptoms.

Doctors don’t believe me when I tell them about my symptoms. Especially because all of my tests come back “normal.”

I’m sorry, I can’t do that…I don’t feel well. Again.

I don’t like taking pain medications. They just don’t work for me.

Isn’t everyone in pain and exhausted all the time?

I’m too tired to exercise.

I’m afraid to exercise because when I exercise, everything hurts more.

I’ve been to PT before. It didn’t help or it worsened my symptoms.

Common symptoms (by body system) in hEDS

Ehlers-Danlos syndrome (EDS) affects connective tissue throughout the body, so symptoms rarely stay confined to just one area. Many people recognize pieces of themselves in several of the sections below. This wide-ranging presentation is not random—it reflects how connective tissue, the nervous system, and regulation systems interact in EDS [Castori 2017; Malfait 2017].

Musculoskeletal Symptoms

These are often the first symptoms people notice, but they are rarely the only ones.

Common features include:

• Soft tissue injuries and frequent sprains and strains

• Skin that feels soft, wounds that take longer to heal, scars that heal wide

• Joint instability, subluxations, and occasional dislocations, clicking, popping

• Pain that is widespread 

• Pain and fatigue that are delayed and disproportionate to activity

• Muscle spasms, trigger points, and chronic tension

• Clumsiness

• Delayed motor milestones in childhood (late sitting, crawling, or walking)

Joints most commonly affected:

• Shoulders

• Hips

• Knees and ankles

• Wrists, hands, fingers

• Jaw (TMJ)

• Neck

In EDS, ligaments and joint capsules do not provide firm passive support, so muscles must work constantly to maintain alignment. Over time, this leads to fatigue, pain, and injury—even during everyday activities [Castori 2012; Celletti 2015].

Nervous System and Regulation Symptoms

EDS affects how the nervous system senses, regulates, and responds to movement and stress.

Common features include:

• Poor proprioception (reduced joint position sense)

• Clumsiness or frequent bumping into objects

• Headaches or chronic migraines

• Anxiety or heightened stress response

• Difficulty concentrating or “brain fog”

• Poor sleep quality

• Chronic, disabling fatigue

Neurodivergent features are also more common in EDS, including:

• ADHD

• Autism spectrum traits

• Emotional dysregulation

• Sensory sensitivities

These patterns reflect an overactive or poorly regulated nervous system rather than a psychological weakness [Rombaut 2015; Engelbert 2017; Eccles 2012].

Autonomic and Vascular Symptoms

Many people with EDS experience symptoms related to autonomic nervous system dysfunction.

Common features include:

• Orthostatic intolerance (feeling worse when upright)

• Low blood pressure

• Rapid heart rate (POTS)

• Dizziness or fainting (syncope)

• Easy bruising

• Frequent nosebleeds

These symptoms can significantly affect stamina, exercise tolerance, and daily function [Eccles 2012; Hakim 2017].

Immune and Mast Cell–Related Symptoms

Immune dysregulation is increasingly recognized in people with EDS.

Common features include:

• Allergies or multiple sensitivities

• Mast cell activation symptoms (flushing, itching, hives)

• Anaphylaxis or near-anaphylactic reactions

• Sensitivity to medications, foods, or chemicals

These symptoms can overlap with GI, skin, and cardiovascular issues, making them difficult to recognize as part of one condition [Afrin 2016; Castori 2017].

Gastrointestinal Symptoms

Connective tissue plays a key role in GI structure and motility.

Common features include:

• IBS-type symptoms

• GERD or reflux

• Severe constipation or alternating diarrhea

• Bloating and abdominal pain

• Food sensitivities or restricted eating patterns

GI symptoms can strongly influence energy levels, nutrition, and overall symptom burden [Fikree 2017].

Skin and Soft Tissue Symptoms

Skin and fascial tissues are often affected in EDS.

Common features include:

• Stretchy or fragile skin

• Slow or poor wound healing

• Abnormal scarring

• Easy bruising

• Hernias

These signs reflect differences in collagen structure and tissue resilience [Malfait 2017].

Urologic and Gynecologic Symptoms

Pelvic and bladder symptoms are common but often under-discussed.

Common features include:

• Urinary incontinence

• Pelvic pain

• Painful or heavy periods

• Dysmenorrhea

• Pelvic organ prolapse

Pelvic symptoms often intersect with musculoskeletal instability and nervous system regulation [Castori 2017].

Breathing and Pulmonary Patterns

Breathing mechanics are frequently altered in EDS.

Common features include:

• Upper-chest–dominant breathing

• Shortness of breath

• Asthma-like symptoms

• Worsening symptoms after viral illness, including long COVID

Inefficient breathing patterns can worsen fatigue, dizziness, and muscle tension [Engelbert 2017].

Fatigue and Energy Limitation

Fatigue in EDS is multifactorial and often profound.

Contributing factors include:

• Poor sleep

• Autonomic dysfunction

• Chronic pain

• Nutritional challenges

• Deconditioning

• Ongoing stress and inflammation

Fatigue is not simply “being out of shape”—it reflects system-wide strain [Clauw 2014].

Psychological and Social Impact

Living in a body that feels unpredictable has real emotional consequences.

Common experiences include:

• Anxiety or depression

• Kinesiophobia (fear of movement)

• Social withdrawal

• Medical gaslighting

• Identity stress, including gender dysphoria

• Feeling dismissed or misunderstood

These responses are understandable adaptations to chronic symptoms—not character flaws [Clauw 2014; Castori 2017].

Patient Summary: What This Means for Me

“My symptoms don’t stay in one system because EDS affects connective tissue, nerves, circulation, and immune responses throughout my body. Joint pain, fatigue, dizziness, GI issues, allergies, and anxiety are all connected—not random. Understanding this helps me see that I’m not imagining symptoms or failing treatment. My body works differently, and care needs to support the whole system, not just one painful joint.”

If these symptoms sound familiar, contact us to find compassionate care and to learn more!

After your initial visit with W4T, you will get answers to the questions…

what’s included with a comprehensive Physical Therapy Evaluation for Hypermobility/EDS?

Services and things you will LEARN more about