I recently received an Ehlers-Danlos Syndrome diagnosis, which wasn’t entirely unexpected—hypermobility was already something my doctor was aware of, and many of the symptoms commonly associated with EDS have been part of my health history for years.
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The EDS diagnosis came up during a recent appointment, where I mentioned some EDS-related genetic markers that had been flagged when I ran my AncestryDNA results through the free version of Sequencing.com. These reports aren’t diagnostic, of course, but they were enough to start a conversation.
As it turns out, my doctor actually has Ehlers-Danlos Syndrome herself and is very familiar with the condition! After discussing my symptoms, medical history, and hypermobility, she felt confident in the diagnosis. We also talked about pursuing genetic testing in the future, although it’s something I’ll likely need to save for since it would probably be an out-of-pocket expense.
What Is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that affect the body’s collagen. Collagen is a protein that helps provide structure and support throughout the body. It’s found in the skin, joints, ligaments, tendons, blood vessels, and other tissues. Because connective tissue is found almost everywhere, EDS affects much more than just the joints.
There are several different types of Ehlers-Danlos Syndrome, each with its own characteristics and diagnostic criteria. Some types are extremely rare, while others are more commonly diagnosed. The Ehlers Danlos Society identifies 14 types of EDS:
Although many people associate EDS primarily with joint hypermobility, the condition can affect multiple body systems and cause a wide range of symptoms. Depending on the individual, EDS may contribute to chronic pain, fatigue, dizziness, digestive issues, joint instability, frequent injuries, and other health concerns.
One of the reasons EDS can be difficult to recognize—and an Ehlers-Danlos Syndrome diagnosis hard to come by—is that many of these symptoms also occur in other conditions. As a result, people often spend years treating individual symptoms before a connective tissue disorder is considered as a possible underlying explanation.
Common EDS Symptoms
Because EDS affects connective tissue throughout the body, symptoms can vary significantly from person to person. While some people primarily experience joint-related symptoms, others with the same Ehlers-Danlos Syndrome diagnosis may struggle more with fatigue, digestive issues, autonomic dysfunction, chronic pain, or a combination of several different concerns. The severity of symptoms can also vary widely.
Some commonly reported Ehlers-Danlos Syndrome symptoms include:
joint hypermobility
joint and muscle pain
joint instability, subluxations, or dislocations
frequent sprains and injuries
chronic fatigue
dizziness and lightheadedness
headaches and migraines
exercise intolerance
digestive symptoms
easy bruising
soft, stretchy, or fragile skin
delayed wound healing
brain fog and cognitive difficulties
Many people with EDS also have related conditions or overlapping diagnoses. Dysautonomia, mast cell disorders, migraine disorders, and gastrointestinal conditions are commonly discussed within the EDS community.
Of course, having one or more of these symptoms or comorbidities doesn’t automatically mean someone has EDS—many of these symptoms occur in other conditions as well. An Ehlers-Danlos Syndrome diagnosis should always be made by a qualified healthcare professional using a person’s full medical history, symptoms, and diagnostic criteria.
Looking back, several of the symptoms on this list have been part of my own experience for years. Of course, I don’t assume every health issue I’ve ever had is related to EDS, the diagnosis does provide additional context for understanding why certain symptoms and conditions may have appeared alongside one another throughout my life.
Benefits of an Ehlers-Danlos Syndrome Diagnosis
There is currently no cure for Ehlers-Danlos Syndrome, and receiving a diagnosis doesn’t magically change the symptoms someone experiences on a daily basis. But this doesn’t mean an EDS diagnosis is useless.
For many people—myself included—an Ehlers-Danlos Syndrome diagnosis provides important information that can help guide future healthcare decisions. Understanding that a connective tissue disorder may be contributing to symptoms can influence treatment approaches, injury prevention strategies, physical therapy recommendatoins, and conversations with healthcare providers.
Depending on an individual’s circumstances, a diagnosis may also support requests for accommodations at school, work, or in healthcare settings. While not everyone will need formal accommodations, having documentation can make those conversations easier when support is needed.
An EDS diagnosis can also provide access to resources, educational materials, support groups, and communities of people wiht similar experiences. Living with a chronic illness can often feel isolating, and connecting with others who understand can be helpful, too.
For me, one of the biggest benefits has simply been having additional context. The diagnosis doesn’t erase symptoms or answer every question, but it does provide a key piece of information that helps explain certain patterns throughout my health history and inform future decisions about managing my health.
Symptoms Explained by EDS
Many people spend years dealing with a collection of symptoms that seem unrelated on the surface. Joint issues might be treated separately from fatigue. Dizziness might be viewed as its own concern. Chronic pain, migraine, digestive symptoms, and exercise intolerance can each lead to different specialists, different tests, and different explanations— and sometimes, they really are distinct. But because EDS affects connective tissue throughout the body, it can sometimes provide a common thread between symptoms that previously appeared unrelated.
Since receiving my own Ehlers-Danlos Syndrome diagnosis, I’ve found myself looking back at certain aspects of my health history through a different lens. My hypermobility, chronic pain, fatigue, dizziness, migraine, and exercise intolerance are all symptoms that can be attributed to EDS. While those symptoms and more were already very real before this diagnosis, having a connective tissue disorder on my medical chart helps explain why they occur.
Of course, this doesn’t mean that every symptom and diagnosis I’ve ever received can be traced back to EDS. Chronic illness is rarely that straightforward, and many conditions overlap or influence each other. In my case, I still have multiple diagnoses that remain important parts of my overall health journey.
Managing Ehlers-Danlos Syndrome
Because EDS affects everyone differently, management plans can vary significantly from person to person. Factors such as symptom severity, comorbid conditions, lifestyle, access to healthcare, and the specific type of EDS can all influence what management looks like.
Depending on an individual’s needs, management might include:
physical therapy
activity modification
mobility aids
pain management strategies
pacing and energy management
compression garments
supportive braces or supports
strengthening and stabilization exercises
accommodations at work or school
monitoring and managing related conditions
For many of us, managing EDS is less about finding a single solution and more about building a collection of tools, habits, and supports that make daily life easier. In my case, this Ehlers-Danlos Syndrome diagnosis is relatively new. Many of the accommodations and strategies I currently use were implemented long before EDS entered the conversation, the diagnosis provides additional context that can help guide my future symptom management and healthcare.
Like many chronic illnesses, EDS is a condition that requires ongoing learning and adjustment over time. As I continue learning more about the condition, I’m sure I’ll discover new resources, strategies, and approaches that fit my particular needs.
If you have EDS too, feel free to drop your best tips or insights in the comments!
Receiving an Ehlers-Danlos Syndrome diagnosis doesn’t change anything concretely, but it does provide a better understanding of why my body works the way it does. After years of symptoms and more than a decade of searching for answers, I’m just grateful to finally have another piece of the puzzle!
