Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) are connective tissue conditions that can affect far more than the joints. People with hypermobility may experience joint instability, chronic pain, fatigue, gastrointestinal symptoms, dysautonomia, migraines, and other multisystem concerns.
Because symptoms can vary widely from person to person, EDS and HSD can sometimes go unrecognized for years. A diagnosis can provide an important framework for understanding seemingly unrelated symptoms and connecting patients with providers who understand the unique needs of hypermobile bodies.
What Is Ehlers-Danlos Syndrome?
Ehlers-Danlos syndromes (EDS) are a group of 13 inherited connective tissue disorders. Connective tissue provides structure and support throughout the body, including in the skin, joints, blood vessels, organs, and other tissues. Depending on the type of EDS, people may experience:
- Generalized joint hypermobility
- Joint instability or recurrent dislocations
- Chronic or widespread pain
- Stretchy or unusually soft skin
- Easy bruising
- Abnormal or slow wound healing
- Tissue fragility
- Fatigue and exercise intolerance
- Other multi-system symptoms
EDS runs in families and is present from birth. Most types of EDS have known associated genetic mutations affecting the creation, processing, and integrity of collagen. However, the most common form of EDS known as Hypermobile EDS (hEDS), affecting nearly 90% of EDS patients, is still being researched for underlying genetic mutations.
What Is Hypermobile Ehlers-Danlos Syndrome (hEDS)?
Hypermobile Ehlers-Danlos syndrome (hEDS) is characterized by generalized joint hypermobility, connective tissue features, and musculoskeletal complications such as chronic pain and joint instability. Being flexible does not necessarily mean someone has hEDS. Many people are naturally flexible and have no associated health problems. For hEDS, hypermobility occurs alongside other specific clinical features and symptoms, and other possible explanations for those symptoms must be considered.
At this time, hEDS is a clinical diagnosis, whereas the more rare forms of EDS can be tested for with genetic testing.
What Is Hypermobility Spectrum Disorder (HSD)?
Hypermobility spectrum disorders (HSD) describe symptomatic joint hypermobility that does not meet the diagnostic criteria for hEDS or another specific connective tissue disorder. HSD can still cause significant symptoms, including:
- Joint pain
- Joint instability
- Recurrent injuries
- Muscle tension and fatigue
- Reduced exercise tolerance
- Chronic pain
- Problems with proprioception and body awareness
A diagnosis of HSD does not mean that someone’s symptoms are less important than those associated with hEDS. Both hEDS and HSD can significantly affect quality of life and may require specialized, multidisciplinary care.
The criteria for hEDS have historically been changed, and it is possible that some with a diagnosis of HSD may later be considered to have hEDS if the criteria change again. Sometimes HSD may be acquired later in life, and is not always present since birth.
Why Do Some People Call EDS a “Bendy Body” Condition?
EDS and HSD can often impart some extra physical abilities. Many professional and Olympic athletes have EDS, especially gymnasts, figure skaters, and volleyball players. It is also common among dancers, acrobats, cheerleaders, and pilates and yoga instructors.
But increased flexibility can also come with a tradeoff. When joints move beyond what the surrounding muscles and connective tissues can comfortably stabilize, repetitive strain or injury can occur. Someone who has always been exceptionally flexible may not realize that their flexibility is contributing to chronic pain or recurring injuries until their body can no longer compensate.
Sometimes a diagnosis comes shortly after a hypermobile individual is injured from overdoing it while practicing a skill that came naturally for them.
Why Is an EDS or HSD Diagnosis Important?
I’ve had patients tell me that a previous physician suggested that an EDS diagnosis didn’t really matter because “there’s nothing you can do about it.” This always pains me to hear, as it could not be further from the truth, and often leads to suffering individuals having their many co-existing multi-system health troubles mis-diagnosed and mis-managed, or not diagnosed at all.
A diagnosis can be extremely valuable even when there is no single treatment that cures the underlying connective tissue condition.
A diagnosis can help explain symptoms that may otherwise seem unrelated. EDS is associated with a large number of possible co-occurring conditions or “comorbidities.” Having a diagnosis helps to put health concerns into perspective as an interconnected web and helps healthcare providers recognize patterns that may warrant evaluation for other conditions commonly associated with hEDS and HSD.
A diagnosis also opens the door to referrals to a network of providers who can help support the many facets of life with EDS and HSD. For example, someone with hypermobility and chronic joint pain may benefit from working with highly specialized physical therapists and manual therapists who understand hypermobility and can teach patients how to create more stability in their joints when past physical therapy has failed or resulted in injury!
Conditions Commonly Along for the Ride
One of the most important things to understand about EDS and HSD is that the effects of connective tissue differences are not necessarily limited to the joints.
Research has identified associations between hEDS/HSD and a range of other symptoms and conditions. These associations are an active area of research, and having hEDS or HSD does not automatically mean that a person has any particular comorbidity.
Knowing you have EDS helps a specialist know to screen for, and later provide support for, the following conditions:
1. POTS and Dysautonomia
Postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia can cause symptoms related to the body’s regulation of heart rate and blood pressure. Symptoms may include:
- Lightheadedness or dizziness when standing
- Racing or pounding heartbeat
- Exercise intolerance
- Fatigue
- Shortness of breath
- Brain fog
- Feeling faint or actually fainting
2. Mast Cell-Related Symptoms and MCAS
Some people with hEDS/HSD experience symptoms that may suggest mast cell involvement, including but not limited to:
- Flushing sensations
- Itching or hives
- Environmental sensitivities
- GI symptoms like bloating, nausea or diarrhea
- Swelling
- Wheezing or asthma
- Headaches or migraines
- Palpitations
The relationship between hEDS/HSD and mast cell activation syndrome (MCAS) remains an evolving area of research.
3. Gastrointestinal Dysfunction
GI symptoms are particularly common among people with hEDS/HSD. Research has identified associations with disorders of gut-brain interaction, reflux, dysmotility, and other gastrointestinal problems. Symptoms may include:
- Bloating
- Chronic IBS
- Abdominal pain
- Constipation or diarrhea
- Reflux
- Nausea
- Early fullness
- Difficulty tolerating certain foods
- Changes in gastrointestinal motility
- Gastroparesis
- Superior Mesenteric Artery Syndrome (SMAS)
4. Chronic Pain and Fibromyalgia
Up to 81% of Fibromyalgia patients have been shown to be hypermobile in research. Chronic musculoskeletal pain is common in hEDS/HSD and may involve individual joints, multiple areas of the body, or become widespread over time. Understanding whether pain is related to joint instability, muscle overuse, nervous system sensitization, another condition, or a combination of factors can help guide treatment.
5. Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)
Fatigue is another common concern among people with hEDS/HSD. Fatigue can have many contributors, including chronic pain, poor sleep, autonomic dysfunction, gastrointestinal problems, nutritional deficiencies, deconditioning, and the increased muscular effort required to stabilize hypermobile joints. This is one reason a whole-person evaluation can be particularly valuable for people with multi-system symptoms.
6. Neurological Conditions and Complications
Some people with hEDS/HSD may be evaluated for neurological or structural conditions, including:
- Small fiber neuropathy
- Headaches and migraine
- Craniocervical instability
- Atlantoaxial instability
- Chiari malformation
- Tethered cord syndrome
- Intracranial hypertension
- Cerebrospinal fluid leaks
These conditions are complex and can have symptoms that overlap with other disorders.
7. Neurodivergence and ADHD
Research has also identified associations between hEDS and neurodevelopmental conditions such as ADHD and autism. Close to 50% of hEDS patients may meet criteria for ADHD. Autism is also 7.4 times more likely in hypermobile individuals than the general population.
This does not mean that hypermobility causes ADHD or autism, or that every person with hEDS/HSD is neurodivergent. Rather, these overlapping patterns are an area of ongoing research and may be relevant when considering the whole person and their individual healthcare needs.
Many times I will see patients for the above diagnoses who never had any idea they were also hypermobile. No one just has MCAS or just POTS. They are always present for a reason. We can connect the dots with connective tissue.
Looking at the Whole Person, Not Just the Joints
One of the most important shifts in caring for EDS and HSD is recognizing that hypermobility can be part of a larger pattern of health rather than simply a musculoskeletal issue. A patient may come in because of:
- Chronic digestive symptoms
- Dizziness
- Chronic fatigue
- Joint pain
- Migraines
- Exercise intolerance
- Food or environmental sensitivities
- Recurrent injuries
Sometimes, the connection to hypermobility becomes apparent only after looking at the complete health history.
This does not mean that every symptom has the same underlying cause. Instead, identifying hypermobility can provide an important piece of the puzzle and help clinicians ask better questions about the rest of a patient’s health.
Life With EDS and HSD Exists on a Spectrum
There is no single way that EDS or HSD looks.
Some people have hypermobility with relatively few symptoms or comorbidities. Others experience chronic pain, fatigue, autonomic symptoms, gastrointestinal problems, or multiple overlapping conditions that significantly affect their daily lives.
Some people remain highly active and athletic. Others may need substantial accommodations or may struggle to maintain employment because of pain, fatigue, or other symptoms.
The goal of care is not to “cure” someone’s body or eliminate their flexibility. It is to help them understand their body, reduce preventable suffering, improve stability and function, and access the support they need.
For many people, receiving an accurate diagnosis can be the beginning of that process.
Specialized Care for Hypermobile Bodies
Caring for someone with EDS or HSD often requires looking beyond a single symptom or body system. A comprehensive approach may include collaboration among:
- Primary care providers
- Physical therapists experienced in hypermobility
- Occupational therapists
- Cardiologists or autonomic specialists
- Gastroenterologists
- Neurologists
- Rheumatologists or geneticists when appropriate
- Nutrition professionals
- Pain specialists
- Mental health professionals
The specific team depends on the individual’s symptoms and needs.
At Peninsula Integrative Medicine, we take a whole-person approach to complex, multi-system health concerns, including helping patients explore whether hypermobility may be contributing to patterns of symptoms that have been difficult to connect.
If you have been told that you are “just flexible,” but you also experience chronic pain, recurrent injuries, fatigue, digestive symptoms, dizziness, exercise intolerance, or other unexplained health concerns, it may be worth having a conversation with a healthcare professional who understands hypermobility.
Your body may be bendy. That doesn’t mean your symptoms should be dismissed.
If you have been diagnosed with EDS or another connective tissue disorder or suspect your symptoms may be related, and you want a partner in your health journey, request a complimentary consultation with Dr. Michael McKee to explore working together.
