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Want to Unlock Ehlers-Danlos Syndrome? No More Loose Joints and Chronic Pain

last updated May 8 0 comments

ehlers-danlos syndrome eds symptoms

Do you ever feel like your joints bend a little (or a lot) more than most people's, or experience chronic pain that seems to have no clear cause? If so, you might be interested in learning about Ehlers-Danlos syndrome (EDS). EDS is a group of inherited connective tissue disorders that can affect various parts of the body, most notably the joints and skin. The most common symptom of EDS is joint hypermobility, meaning your joints have an increased range of motion beyond what's considered typical. While this extra flexibility might sound like a superpower at first, it can often lead to pain, instability, and challenges with everyday activities.

This article explores the world of EDS, including its causes, symptoms, and the impact it has on daily life. We'll also introduce a promising complementary treatment approach: posture alignment therapy. By understanding EDS and exploring various management options, you can take control of your health and live a fulfilling life.

Understanding EDS: The Spectrum of Connective Tissue Disorders

what is ehlers danlos syndrome

What is Ehlers-Danlos Syndrome (EDS)?

Ehlers-Danlos syndrome (EDS) isn't a single condition but rather a spectrum of inherited connective tissue disorders. Connective tissue acts as the body's "building block," providing structure, support, and elasticity to various parts like skin, bones, joints, and blood vessels. In EDS, a genetic mutation affects the production or quality of collagen, a protein vital for the strength and flexibility of connective tissue. This can lead to a range of symptoms throughout the body.

Causes and Risk Factors:

EDS is primarily a genetic condition, meaning it's passed down through families. Mutations in genes responsible for collagen production or structure are the main culprits. Prevalence of some types of EDS follows an autosomal dominant inheritance pattern, meaning there’s a fifty-percent chance of inheriting the condition if one parent has the gene. These include Hypermobile EDS, Classical EDS, Vascular EDS, Arthrochalasia EDS, and Periodontal EDS.

EDS: In the Genes

These letters and numbers (col followed by a number and sometimes a letter) refer to specific genes that code for different types of collagen. Collagen is a crucial protein that acts as the building block of connective tissue throughout the body. In people with EDS, mutations (changes) in these specific genes can lead to abnormalities in collagen production or structure, which contributes to the various symptoms of EDS. Here's a breakdown of the relevance of each:

  • col1a1 & col1a2: These genes code for type I collagen, the most abundant type found in bones, skin, and tendons. Mutations in these genes are associated with some less common types of EDS, such as the cardiac-valvular type and some forms of arthrochalasia type.
  • col3a1: This gene codes for type III collagen, a crucial component of blood vessels, lungs, and intestines. Mutations in col3a1 are primarily associated with Vascular EDS (vEDS), the most serious type. vEDS affects the strength and elasticity of blood vessels, making them prone to rupture.
  • col5a1 & col5a2: These genes code for type V collagen, a protein found in high concentrations in connective tissues like skin, tendons, and joint capsules. Mutations in these genes are the most common cause of Classical EDS (cEDS), characterized by high skin hyperextensibility and easy bruising. They can also be a factor in Hypermobile EDS (hEDS), the most prevalent type.

It's important to note that not everyone with mutations in these genes will develop EDS. However, they are strong indicators of a predisposition to the condition. Genetic testing can sometimes be used to confirm specific types of EDS.

Symptoms of EDS

symptoms of eds and hsd

Many EDS symptoms directly impact posture and movement. Here are some of the most common:

  • Joint Hypermobility: This hallmark feature of EDS means your joints have an unusually wide range of motion. While initially seeming advantageous, it can lead to instability, pain, and dislocations.
  • Chronic Pain: Due to loose joints, muscle fatigue, and inflammation, chronic pain is a frequent companion for people with EDS.
  • Fatigue: Many with EDS experience unexplained fatigue that significantly impacts daily activities.
  • Postural Imbalances: Loose joints and muscle weakness contribute to poor posture, further increasing pain and affecting balance.

Additional Symptoms:

While the focus here is on movement-related symptoms, EDS can also cause:

  • Easy bruising and fragile skin
  • Digestive problems
  • Dizziness upon standing
  • Organ prolapse (displacement of organs)

Looking for Support Managing EDS?

Tired of feeling limited by loose joints and chronic pain? Take action by scheduling a Free Consultation and Posture Assessment with a posture therapist today. They'll assess your specific needs and see if posture therapy is the right fit for your EDS management plan. Don't wait – take the first step towards a healthier, happier you!

Types of Ehlers-Danlos Syndrome

The 2017 International Classification of Ehlers-Danlos syndromes currently identifies thirteen recognized types of EDS, each with its own characteristics. While we won't discuss every type here, some of the most common include:

ehlers-danlos syndrome signs hypermobile eds elbow hyperextension

Hypermobile EDS (hEDS):

  • This is the most common type of EDS, affecting about 90% of all EDS cases.
  • The hallmark symptom is joint hypermobility, meaning your joints have an unusually wide range of motion. This can lead to frequent joint dislocations, subluxations (partial dislocations), and pain.
  • People with hypermobile Ehlers-Danlos syndrome may also experience chronic pain, fatigue, and postural imbalances.

Classical EDS (cEDS):

  • This type is known for its loose, stretchy skin that bruises easily and has difficulty with wound healing. Scars from injuries may be thin and indented (atrophic).
  • Joint hypermobility can also be present in classical Ehlers-Danlos syndrome, though typically to a lesser extent than in hEDS.

Vascular EDS (vEDS):

  • This is the most serious form of EDS, affecting the blood vessels and internal organs.
  • Vascular Ehlers-Danlos syndrome can lead to ruptures in arteries, intestines, or the uterus, making it crucial to seek immediate medical attention if you suspect you might have it.
  • People with this vascular type may experience easy bruising, bleeding problems, and internal organ complications.

Kyphoscoliotic EDS (kEDS):

  • This type is characterized by weak muscle tone, or hypotonia, with severe spine curvature (kyphoscoliosis = kyphosis and scoliosis) and short stature.
  • Early-onset of joint hypermobility with loose, unstable joints may cause a delay in sitting and walking.
  • People with kyphoscoliotic Ehlers-Danlos syndrome may have difficulty breathing and experience chronic pain due to spinal curvature.

Less Common, Rare Types of Ehlers-Danlos Syndrome:

  • Arthrochalasia EDS (aEDS)
  • Brittle cornea syndrome (BCS)
  • Cardiac-valvular EDS (cvEDS)
  • Classical-like EDS (clEDS)
  • Dermatosparaxis (dEDS)
  • Musculocontractual (mcEDS)
  • Myopathic EDS (mEDS)
  • Periodontal EDS (pEDS)
  • Spondylodysplastic EDS (spEDS)

EDS or HSD? Hypermobility Spectrum Disorder

ehlers-danlos syndrome or hypermobility spectrum disorder eds or hsd

Tests of hypermobility such as bending your thumb back to your forearm are not definitive for EDS. Fascial laxity or fascial tension and joint mobility varies greatly among the population.

Hypermobility spectrum disorder (HSD) is a condition closely related to EDS, particularly hEDS. It shares the symptom of joint hypermobility but without the other extra-articular (outside the joints) features typically seen in EDS, such as very stretchy, velvety skin or easy bruising. The distinction between hEDS and HSD can sometimes be blurry, and diagnosis can be complex. Treatments, however, are similar, if not the same.

Diagnosis and Testing for EDS

Unfortunately, diagnosing EDS can be challenging because there's no single definitive test. Doctors often rely on a combination of family history, physical examination, and sometimes genetic testing to reach a diagnosis. Other conditions, like joint hypermobility syndrome (JHS) or double-jointedness, may similarly cause joints to be very flexible and painful.

Checking Your Mobility: A Guide to the Beighton Score

Many people with Ehlers-Danlos syndrome (EDS) experience hypermobility, meaning their joints have an unusually wide range of motion. While a doctor's diagnosis is crucial, there are a few simple tests you can try at home to get a general sense of your own joint flexibility. These tests are based on the Beighton score, a common tool healthcare professionals use to assess hypermobility.

Important Note: These tests are for informational purposes only and shouldn't be used to diagnose yourself. If you suspect you might have EDS or experience any pain during these tests, consult with a healthcare professional for proper evaluation.

The Beighton Score Tests (Focus on 4 out of 9):
  • Active Forward Flexion: From a standing position, flex your trunk forward with your knees fully extended. Can the palms of your hands rest flat on the floor? (1 point)
  • Passive Knee Hyperextension: Lie on your back with your legs straight. Can your knee push back further than straight, causing your heel to lift off the table (>10 degrees of knee hyperextension)? (1 point for each knee)
  • Thumb Hyperextension: With your palms facing forward, try to bend your thumbs back towards your forearms. Can you touch your forearm with your thumb? (1 point for each thumb)
  • Fifth Finger (Pinky) Hyperextension: Straighten your hands and spread your fingers. Can you bend your pinky fingers back beyond 90 degrees? (1 point for each pinky)
  • Elbow Hyperextension: With your arms straight, can you bend your elbows back beyond straight (>10 degrees of elbow hyperextension)? (1 point for each elbow)
beighton score test for eds forward trunk flexion
beighton score test for eds knee hyperextension
beighton score test for eds hypermobility bend thumb down
beighton score test for eds hypermobility bend pinky back
beighton score test for eds hypermobility elbow hyperextension greater than 10 degrees
Interpreting Your Score:

The Beighton score assigns one point for each test where you achieve the hypermobility position. Here's a general guideline:

  • 0-3 points: Considered normal range of motion.
  • 4-9 points: This may indicate hypermobility. However, a score alone isn't diagnostic of EDS. Other symptoms and a doctor's evaluation are crucial.

Remember:

  • These are just a few examples from the Beighton score.
  • Pain during these tests is not a good sign. Stop if you feel any discomfort.
  • A high score doesn't necessarily mean you have EDS.
  • If you suspect you might have hypermobility or EDS, consult with a healthcare professional for a proper diagnosis and discuss treatment options.

The Importance of Consulting a Healthcare Professional:

If you suspect you might have EDS, it's crucial to consult a healthcare professional for a proper diagnosis. They can help determine the specific type of EDS you have and develop a personalized treatment plan to manage your symptoms and improve your quality of life.

Living with EDS: Embracing a Holistic Approach

posture therapy whole body approach

Ehlers-Danlos syndrome can significantly impact daily life. Limitations in physical activities due to joint pain and instability are common. Simple tasks like carrying groceries or climbing stairs can become challenging. The chronic nature of EDS can also lead to fatigue and difficulty keeping up with daily routines. Additionally, the social aspects of life might be affected, as participating in certain activities or keeping up with friends who are more physically active can become difficult.

However, it's important to remember that EDS is manageable, not curable. By adopting a holistic approach that addresses various aspects of the condition, you can significantly improve your quality of life.

Traditional treatments for EDS often focus on physical therapy to strengthen muscles surrounding the joints and improve stability. Pain management strategies, including medication and relaxation techniques, can also play a crucial role. This is where posture alignment therapy emerges as a promising complementary approach.

The Mobility-Stability Model and EDS: Understanding Your Body's Movement Puzzle

Ehlers-Danlos syndrome (EDS) can significantly disrupt the delicate balance between mobility and stability in your joints. To understand how EDS affects movement, let's explore the mobility-stability model. This concept divides your joints into two categories:

  • Mobile Joints: These joints, like your shoulders and hips, are designed for a wide range of motion. They allow you to reach, bend, and twist with ease.
  • Stable Joints: These joints, like your elbows and knees, prioritize stability and support your body weight during activities like walking and running.

This model works seamlessly in a healthy body. Mobile joints move freely, while stable joints provide a strong foundation. However, EDS disrupts this balance.

mobility-stability model of function

Our body works in alternating patterns of mobile and stable segments and joints. This alternating pattern provides optimal body mechanics for efficient movement. However, when the role of stable segments becomes mobile, pain and injury follow.

How EDS Affects the Mobility-Stability Model:

  • Hypermobility in Mobile Joints: One of the hallmarks of EDS is hypermobility, meaning your joints move beyond the intended range. This excessive mobility in the shoulders, hips, and other mobile joints can lead to instability, dislocations, and pain.
  • Instability in Stable Joints: The constant strain from hypermobile mobile joints can put undue stress on stable joints like your spine and knees, leading to imbalances, misalignment, and pain in these areas as well.

The Vicious Cycle:

The challenges don't stop there. Instability in both mobile and stable joints can create a vicious cycle. Instability in mobile joints can lead to muscle weakness around those joints, further compromising stability. Similarly, instability in stable joints can affect the function of nearby muscles, hindering their ability to support the surrounding structures. This cycle of instability and weakness can worsen pain and further limit mobility.

Posture Alignment Therapy: Your Ally in Managing EDS

Musculoskeletal pain posture therapy

Posture alignment therapy is a valuable tool in addressing the mobility-stability imbalance in EDS. By focusing on proper alignment, body mechanics, and retraining movement patterns, it can help:

  • Joint control: Improved muscle activation, strength, and awareness can improve control over overly hypermobile joints, reducing the risk of instability.
  • Movement efficiency: A balanced neuromuscular coordination and strengthening approach can promote more efficient movement patterns, removing unnecessary strain from unstable joints.
  • Pain reduction: Posture alignment therapy can offer significant pain relief by addressing the underlying imbalances contributing to pain and restoring proper design function.
  • Improve alignment: Correcting postural imbalances can take pressure off joints, both mobile and stable, helping to reduce pain and improve overall function.
  • Enhance proprioception: Increased body awareness can help people with EDS move with more control and prevent further injuries.
  • Strengthen supportive muscles: Posture alignment therapy can improve stability in both mobile and stable joints by targeting specific muscle groups.

Remember, the mobility-stability model isn't a rigid classification. Many joints have elements of both mobility and stability. However, understanding this concept can provide valuable insight into how EDS affects your body and how posture alignment therapy can offer a path toward improved movement and reduced pain.

Conclusion: Charting Your Course with Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome (EDS) is a spectrum of genetic disorders affecting connective tissue, leading to symptoms like joint hypermobilitychronic pain, fatigue, and postural imbalances. While there's no cure, a holistic approach to management is crucial. While traditional treatments like physical therapy and pain management strategies offer benefits, posture alignment therapy is a valuable complementary approach. By addressing neuromuscular control and retraining movement patterns, posture therapy can improve alignment, reduce pain, and enhance body awareness for people with EDS.

Remember, you're not alone in navigating EDS. The key is to find qualified healthcare providers who understand the condition and can create a personalized treatment plan to meet your specific needs. Don't hesitate to discuss posture alignment therapy with your doctor or physical therapist to see if it can be a valuable addition to your EDS management strategy. By exploring various options like individualized, virtual posture therapy and taking an active role in your health, you can empower yourself to live a fulfilling and active life with EDS.

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Don't Just Survive, Thrive with EDS: Schedule Your Free Consultation Today!

Feeling lost in a maze of loose joints and chronic pain? You're not alone. This article shed light on Ehlers-Danlos Syndrome (EDS) and the power of posture alignment therapy. But the journey to a healthier, happier you doesn't stop here.

Take the first step towards unlocking your full potential! Schedule a free consultation with a qualified posture therapy professional today. They can assess your specific needs and discuss whether posture alignment therapy could be a valuable addition to your EDS management plan.

This consultation also includes a free posture assessment. By understanding your unique postural imbalances, you can gain insights into how posture alignment therapy can help improve your alignment, reduce pain, and empower you to move with greater confidence.

Don't wait any longer! Schedule your free consultation and unlock a world of possibilities with EDS management.

Frequently Asked Questions About Ehlers-Danlos Syndrome (EDS)

Does EDS get progressively worse?

The severity of EDS varies greatly between individuals and the type of EDS they have. While some people experience a worsening of symptoms over time, others may find their condition remains relatively stable. There's no guaranteed progression, and early diagnosis and proper management can significantly improve quality of life.

Can you have a normal life with EDS?

Absolutely! While it can present challenges, many people with EDS live full and active lives. A combination of traditional treatments, lifestyle modifications, and posture alignment therapy can help manage symptoms and allow for participation in desired activities.

Can EDS be cured?

Unfortunately, there is currently no cure for EDS. However, various treatment approaches are being used to manage symptoms and maximize function.

What is Ehlers-Danlos syndrome life expectancy?

EDS itself doesn't typically shorten lifespan. However, some complications associated with certain types of EDS, like vascular EDS, can be life-threatening if not managed properly. Early diagnosis and proper treatment are crucial.

Why is EDS controversial?

EDS can be challenging to diagnose due to the variation in symptoms and the lack of a single definitive test. This can sometimes lead to delays in diagnosis and frustration for patients. Additionally, some rarer types of EDS are not as well-understood, which can contribute to some controversy.

What can people with EDS not do?

While all activities aren't necessarily off-limits for everyone with EDS, your hypermobility type may render you more susceptible to injuries such as joint dislocations, easy bruising, hernias, or other musculoskeletal injuries. This would suggest avoiding collision and contact sports. It's important to listen to your body and choose activities that don't exacerbate symptoms. A healthcare professional can help you create a safe and effective exercise plan.

Can you have Ehlers-Danlos and not know it?

Yes, it's possible to have EDS and not be aware of it, especially in milder cases. Symptoms can vary greatly, and some people might attribute their joint hypermobility or pain to other causes. This is why consulting with a healthcare professional familiar with EDS is important for proper diagnosis.

How does Ehlers-Danlos make you feel?

EDS can cause a variety of physical sensations, with chronic pain being a major concern. People with EDS might also experience fatigue, dizziness, and joint instability. Emotionally, the challenges of managing a chronic condition can lead to frustration and social isolation.

What are the first signs of Ehlers-Danlos syndrome?

Joint hypermobility is often the most noticeable early sign of EDS. However, the initial symptoms can vary depending on the specific type of EDS. If you suspect you or someone you know might have EDS, it's important to consult with a healthcare professional for a proper evaluation.

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