Common Symptoms in hEDS

One of the most disorienting things about having EDS is how many different parts of your body can be affected at once. Joint pain, exhaustion, digestive problems, dizziness, skin issues, anxiety — it can feel like an endless, unrelated list. But it isn't random. EDS affects connective tissue, and connective tissue is everywhere. When it doesn't behave the way it should, the effects ripple across multiple systems at the same time.

Many people with hEDS recognize themselves in several of the sections below. That's not unusual — it's expected. Understanding why each system is affected can help you stop wondering why your body seems to break every rule, and start seeing the pattern underneath.

Joints and muscles

Connective tissue is the passive support system for every joint in your body. In hEDS, ligaments and joint capsules don't provide firm, reliable resistance at end range. That means your muscles have to work constantly to make up the difference — holding things together, compensating for instability, and protecting joints that can't protect themselves. Over time, that constant effort leads to pain, fatigue, and injury even during everyday activities.

Commonly affected joints: shoulders, hips, knees, ankles and feet, wrists, hands and fingers, jaw (TMJ), and neck.

Common experiences include:

  • Joint instability, subluxations, and occasional dislocations

  • Clicking, popping, or shifting sensations in joints

  • Widespread pain, often out of proportion to activity

  • Pain and fatigue that are delayed — sometimes showing up the next day

  • Muscle spasms, trigger points, and chronic tension

  • Frequent sprains, strains, and soft tissue injuries

  • Clumsiness, or a general sense of not knowing where your body is in space

  • In children: delayed motor milestones such as late sitting, crawling, or walking

Skin and wound healing

Collagen gives skin its structure and resilience. When collagen is less organized or less strong than typical, the skin reflects that — it may look and feel different, and it may not heal the way you'd expect.

Common experiences include:

  • Skin that feels unusually soft or velvety

  • Skin that stretches more than expected

  • Wounds that take longer to heal

  • Scars that spread, stay discolored, or have an unusual texture

  • Easy bruising, sometimes without a clear cause

  • Hernias

Nervous system and brain

The nervous system relies on accurate signals from the body to know where joints are, how to coordinate movement, and how to regulate stress. In hEDS, those signals are often inconsistent. Joints that move unpredictably send less reliable proprioceptive information, and the nervous system can become overloaded trying to compensate. This may also help explain why neurodivergent traits and heightened stress responses are more common in people with EDS.

Common experiences include:

  • Poor proprioception — reduced sense of where your joints are without looking

  • Clumsiness or frequently bumping into things

  • Headaches or chronic migraines

  • Brain fog — difficulty concentrating, finding words, or thinking clearly

  • Poor sleep quality

  • Chronic, disabling fatigue

  • Anxiety or a heightened, hard-to-settle stress response

  • ADHD, autism spectrum traits, emotional dysregulation, or sensory sensitivities

Autonomic nervous system and circulation

The autonomic nervous system controls the automatic functions your body manages without conscious thought — heart rate, blood pressure, blood vessel tone, temperature regulation. In hEDS, connective tissue differences in blood vessel walls, combined with nervous system dysregulation, can make these automatic systems less reliable. The result is often symptoms that are worst when you're upright or active and that vary unpredictably from day to day.

Common experiences include:

  • Dizziness or lightheadedness, especially when standing up

  • Orthostatic intolerance — feeling significantly worse when upright

  • Racing heart rate (POTS — postural orthostatic tachycardia syndrome)

  • Low blood pressure

  • Fainting or near-fainting (syncope)

  • Easy bruising and frequent nosebleeds

These symptoms can have a major impact on stamina, exercise tolerance, and daily function — which is one reason EDS-informed PT always considers how the autonomic system is doing, not just how the joints are doing.

Immune system and mast cells

Mast cells are immune cells found in connective tissue throughout the body. Emerging research suggests that in hEDS, these cells may be more easily activated — releasing inflammatory chemicals in response to triggers that wouldn't normally cause a reaction. This can produce symptoms across many systems, making it one of the harder pieces of the EDS picture to recognize and connect.

Common experiences include:

  • Allergies or sensitivities to multiple substances

  • Flushing, itching, hives, or skin reactions without an obvious cause

  • Sensitivity to medications, foods, or environmental chemicals

  • Anaphylaxis or near-anaphylactic reactions

  • Symptoms that seem to overlap with GI, skin, and cardiovascular issues simultaneously

Digestive system

The digestive tract is lined with smooth muscle and supported by connective tissue. When that connective tissue is less firm, the normal movement of food through the gut — a process called motility — can be slowed or disrupted. Nerve involvement can also affect how the gut senses and responds to food and stress.

Common experiences include:

  • IBS-type symptoms — cramping, bloating, urgency, or unpredictable bowel habits

  • Acid reflux or GERD

  • Severe constipation, or alternating constipation and diarrhea

  • Abdominal pain and bloating

  • Food sensitivities or a restricted range of tolerated foods

  • Nausea or feeling full quickly

GI symptoms can significantly affect energy, nutrition, and overall symptom burden — and they're often undertreated in people with EDS because they're addressed in isolation, separate from the connective tissue picture.

Bladder and pelvic floor

Pelvic organs and the bladder are supported by connective tissue and pelvic floor muscles. In hEDS, that support can be less reliable — affecting bladder control, pelvic stability, and reproductive health. These symptoms are common but often under-discussed, which means many people don't realize they're connected to EDS.

Common experiences include:

  • Urinary urgency or incontinence

  • Pelvic pain

  • Painful or heavy periods

  • Dysmenorrhea

  • Pelvic organ prolapse

Breathing

The muscles and structures involved in breathing also rely on connective tissue support. In hEDS, the rib cage and thoracic spine may be less stable, and the diaphragm may not function as efficiently as it should. Many people with hEDS default to shallow, upper-chest breathing without realizing it — a pattern that can worsen fatigue, increase muscle tension in the neck and shoulders, and amplify dizziness.

Common experiences include:

  • Breathing that feels effortful or incomplete

  • Shortness of breath with minimal exertion

  • Asthma-like symptoms that don't fully respond to asthma treatment

  • Symptoms that worsen significantly after viral illness, including long COVID

Breathing retraining is often an early component of EDS-informed physical therapy for exactly this reason.

Fatigue and energy

Fatigue in EDS is not simply being out of shape or deconditioned — though deconditioning can contribute. It's the product of a system that is working harder than it should be, across the board, all the time. Muscles compensating for unstable joints. An autonomic system that doesn't regulate efficiently. A nervous system that's frequently overloaded. A digestive system that may not be absorbing nutrients well. Poor sleep on top of all of it. The fatigue that results reflects genuine system-wide strain.

Common contributing factors include:

  • Chronic pain and the energy cost of managing it

  • Poor or unrestorative sleep

  • Autonomic dysfunction — the body working harder to maintain blood pressure and heart rate

  • Nutritional challenges from GI involvement

  • Deconditioning from reduced activity

  • Ongoing immune activation or inflammation

Emotional and social impact

Living in a body that feels unpredictable — and that has often been dismissed, misunderstood, or misdiagnosed — takes a real emotional toll. The psychological responses that develop in this context are not character flaws or signs of weakness. They are understandable adaptations to chronic, complex, and often invisible suffering.

Common experiences include:

  • Anxiety or depression

  • Fear of movement (kinesiophobia) — not wanting to trigger pain or injury

  • Social withdrawal from activities that feel too risky or too exhausting

  • The lasting impact of medical gaslighting or not being believed

  • Identity stress, including in some cases gender dysphoria

  • Grief over lost function, relationships, or life plans

Addressing these experiences is part of comprehensive EDS care — not a separate issue to be handled elsewhere.

In plain language: 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.

Sources for this section:

  • Castori M. Ehlers-Danlos syndrome, hypermobility type. Am J Med Genet C Semin Med Genet. 2012.

  • Castori M. Natural history and manifestations of hypermobile EDS. Am J Med Genet C Semin Med Genet. 2017.

  • Malfait F, et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017.

  • Celletti C, et al. Rehabilitative approach in hypermobile EDS. Disability and Rehabilitation. 2015.

  • Rombaut L, et al. Impaired proprioception in hypermobility disorders. Rheumatology. 2015.

  • Engelbert RHH, et al. Neuromuscular control and instability. Pediatric Rheumatology. 2017.

  • Eccles J, et al. Joint hypermobility and autonomic dysfunction. Am J Med Genet C Semin Med Genet. 2012.

  • Afrin L, et al. Mast cell activation disease. Immunology and Allergy Clinics. 2016.

  • Fikree A, et al. Gastrointestinal involvement in EDS. Neurogastroenterology & Motility. 2017.

  • Clauw DJ. Central pain mechanisms. Mayo Clinic Proceedings. 2014.

Here is the worksheet that medical providers will use to help determine if you meet the CLINICAL diagnosis of hEDS: https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf

[Please note: Wendy4Therapy is not a medical doctor and is not licensed to provide an official medical diagnosis. Education provided here is for your information only, and it is expected that you visit a medical practitioner who is licensed to provide a diagnosis for further exploration. Wendy4Therapy can take you through the diagnostic criteria but cannot formally diagnose EDS or related conditions. Please do  not reproduce without permission. This is GENERAL and not intended to be customized for individual patients. Please follow consultation and recommendations of your healthcare provider for specifics to your condition.