If you’ve been hearing terms like Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD) and wondering what they mean, you’re not alone. These conditions may sound complex, but understanding them is an important first step if you or someone you know is experiencing chronic pain, joint issues, or other related symptoms.
Let’s break it down.
What is Ehlers-Danlos Syndrome (EDS)?
Ehlers-Danlos Syndrome is a group of inherited disorders that affect your connective tissues, like the collagen that holds your skin, joints, and organs together. Imagine collagen as the glue that keeps everything in place. When that glue isn’t working as it should, things get a little “loose,” which leads to problems like joint instability, skin that bruises easily, and even issues with your internal organs.
What Does "Ehlers-Danlos" Mean?
The name "Ehlers-Danlos Syndrome" pays tribute to two pioneering physicians who contributed to the understanding of this condition: Dr. Edvard Ehlers and Dr. Henri Danlos.
Dr. Edvard Ehlers, a Danish physician, first described the symptoms of this syndrome in 1901. He identified a connection between hypermobility, joint instability, and skin elasticity, noting how these characteristics affected patients’ daily lives.
Dr. Henri Danlos, a French physician, expanded upon Ehlers' findings in the 1920s. He provided further insight into the different manifestations of the syndrome, categorizing various types of connective tissue disorders. His work laid the groundwork for distinguishing EDS as a unique condition characterized by a range of symptoms, including skin hyperextensibility, joint hypermobility, and tissue fragility.
Together, their contributions to the field of connective tissue disorders have helped countless individuals understand their diagnoses and seek appropriate care. Today, EDS encompasses a group of disorders that share common features related to the body's connective tissues, ultimately impacting how the body functions and heals.
Types of EDS
There are 13 subtypes of EDS, each with its own set of symptoms. The most common type is Hypermobile EDS (hEDS), which primarily affects your joints. Some rarer forms, like Vascular EDS, can be more serious and involve your blood vessels.
Common Symptoms of EDS:
Super flexible joints (sometimes too flexible!): You may have joints that move beyond what’s normal.
Chronic pain: Many people with EDS experience ongoing joint and muscle pain.
Fragile skin: Your skin may bruise easily or take longer to heal.
Digestive troubles: Issues like irritable bowel syndrome (IBS) are common.
Dizziness and fainting: EDS can also affect your autonomic nervous system, which controls things like heart rate and blood pressure.
EDS is diagnosed through physical exams, family history, and sometimes genetic testing.
What is Hypermobility Spectrum Disorder (HSD)?
On the other hand, Hypermobility Spectrum Disorder (HSD) shares some symptoms with EDS but isn’t genetically linked like EDS. People with HSD also experience joint hypermobility, which means their joints are more flexible than normal. This can lead to joint pain, fatigue, and muscle strain because your body has to work harder to keep everything stable.
Common Symptoms of HSD:
Joint hypermobility: You might be more flexible than the average person.
Chronic joint pain: Your joints can get achy, especially after activity.
Fatigue: Since your muscles have to work overtime to support your joints, you might feel more tired than usual.
Digestive and autonomic issues: Some people with HSD also experience symptoms like dizziness and digestive issues, but usually to a lesser degree than those with EDS.
HSD is typically diagnosed when hypermobility causes symptoms but doesn’t meet the criteria for EDS.
How Are EDS and HSD Different?
While both EDS and HSD involve joint hypermobility, the key difference is the cause and severity:
EDS has a clear genetic cause, and its symptoms tend to be more severe and widespread.
HSD doesn’t have a known genetic basis, and though it can cause significant pain and instability, it’s generally considered less severe than EDS.
Both conditions still require careful management to help reduce pain, improve strength, and protect your joints.
Comorbidities: The Extra Challenges
People with EDS and HSD often have other health conditions that can make life even more challenging. Some of the most common comorbidities include:
Postural Orthostatic Tachycardia Syndrome (POTS): This affects how blood circulates in your body, causing dizziness, fainting, and rapid heartbeats when standing up.
Mast Cell Activation Syndrome (MCAS): If you find yourself experiencing allergy-like reactions often, MCAS could be at play, with symptoms like hives, swelling, and flushing which are predominant for some. While for others, it can represent with GI symptoms, sinusitis and histamine sensitivity which can increase the joint and muscle pain.
Chronic Fatigue Syndrome (CFS): Feeling tired all the time, even after rest, is a hallmark of this condition. Feeling tired even after a full night sleep and struggling with energy to do daily activities.
What About ADHD and Autism?
Recent studies have found connections between Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD) in people with EDS and HSD. Although this might not seem obvious at first, there are overlapping features that are worth knowing.
ADHD: Many people with EDS or HSD also experience ADHD-like symptoms such as difficulty focusing or memory issues, often due to the mental and physical fatigue that comes with managing chronic pain.
Autism: Those on the autism spectrum may also have hypermobility-related issues, including sensory sensitivities and coordination challenges, which overlap with the proprioceptive difficulties of hypermobility disorders.
Understanding these neurological connections can make a huge difference in how you manage your health and overall well-being.
Managing EDS and HSD: A Better Life is Possible
Living with EDS or HSD can be tough, but it’s not all doom and gloom. There are many ways to manage your symptoms and improve your quality of life.
Movement and Physical Therapy
A solid movement education program and physical therapy can help build up the muscles that support your joints. At ParaMotion, we focus on safe, functional movement patterns that protect your joints and keep you strong.
Pain Management
Pain is a big part of life for many people with EDS and HSD, but there are ways to manage it. This can include everything from physical therapy to medications, and even learning techniques to handle the mental and emotional side of chronic pain.
Joint Care
Regular, low-impact exercise, like swimming or yoga, can help keep your joints strong and stable. Some people also use braces or supports to avoid dislocations and injuries.
Diet and Lifestyle
Eating well, staying hydrated, and making small lifestyle changes can also help manage the digestive and autonomic issues that come with EDS and HSD.
Ready to Take Control of Your Health?
If you think you might have EDS or HSD—or even if you're just struggling with chronic joint pain and fatigue—it’s never too early to start making changes. Small steps, like improving your posture, learning how to move safely, or tweaking your diet, can make a world of difference.
At ParaMotion, we’re here to help. Whether it’s through our personalized movement programs, workshops, or holistic wellness plans, we can support you in building strength, reducing pain, and improving your daily life.
Final Thoughts: You’ve Got This!
Living with EDS or HSD isn’t easy, but it’s not impossible to manage. By understanding your condition and taking proactive steps, you can regain control of your body and start feeling better, one day at a time.
Our Services
Whether you're just getting started or need ongoing support, ParaMotion offers everything from one-time consultations to 5 and 10-session packages, helping you stay on track with your health. Keep an eye out for our upcoming workshops tailored specifically for individuals with EDS, HSD, and related conditions.
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