Hypermobility Spectrum Disorder Symptoms

Discover the signs of hypermobility spectrum disorder symptoms and learn strategies for coping & treatment.

steven zauderer
Steven Zauderer
April 26, 2024
7 min read
min read

Understanding Hypermobility Disorders

Hypermobility disorders are a group of conditions characterized by joints that move beyond the normal range of motion. These conditions, including hypermobile Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD), can present a variety of symptoms and have significant social impacts.

Symptoms of Hypermobility Disorders

People with hypermobile EDS and HSD can experience a wide range of symptoms. These can include physical issues like abdominal cramping, bloating, loose stools, constipation, chronic pain, dizziness when standing up, easy bruising, feeling tired, joint problems like arthritis and dislocation, and issues with skin healing. An individual may not experience all these symptoms, and the severity can vary greatly between people. Understanding these hypermobility spectrum disorder symptoms can help in seeking appropriate treatment and support [1].

Symptoms Description
Abdominal issues Cramping, bloating, loose stools, constipation
Anxiety Chronic worry, stress
Chronic Pain Persistent discomfort in various body parts
Dizziness Particularly when standing up
Easy bruising Skin tends to bruise easily
Fatigue Feeling constantly tired
Joint issues Arthritis, dislocation
Skin healing Difficulty with wounds healing

Social Impact of Hypermobility Disorders

Beyond the physical symptoms, hypermobility disorders can also have a profound impact on an individual's social life. People with these conditions often experience limitations in their social participation, notably in their relationships. Their social network can change over time as acquaintances may distance themselves, while true friends tend to remain supportive and understanding.

For many, support and understanding from others who are experiencing similar challenges can help alleviate feelings of loneliness. However, asking for help can be a challenge in itself, although accepting help becomes easier when the need is truly recognized [2].

Furthermore, the number and types of activities that individuals with hypermobility disorders can participate in often decrease, which can affect their sense of identity and self-worth. This highlights the importance of comprehensive support networks and coping strategies when living with hypermobility disorders.

Understanding the symptoms and social impacts of hypermobility disorders is critical for managing these conditions effectively. With appropriate treatment and support, individuals with these disorders can lead fulfilling lives.

Coping with Hypermobility Disorders

Living with hypermobility disorders such as hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) can present unique challenges. These individuals face not only physical symptoms but also social and emotional struggles, impacting their daily lives.

Seeking Support and Understanding

Individuals with hEDS or HSD often experience limitations in their social participation, especially in their social relationships. The social network of these individuals changes, with acquaintances disappearing and real friends staying. However, fellow sufferers can provide a unique form of support and understanding, helping them feel less alone.

Patients with hEDS or HSD often find it difficult to ask for help, but accepting help becomes easier when they recognize they truly need it. Additionally, individuals with hypermobile EDS may find that cognitive behavior therapy can improve movement and overall well-being, as well as offer a space to discuss feelings of being a burden with family, friends, or counselors.

Limitations in Activities and Identity

The number and types of activities that individuals with hEDS or HSD can participate in often decrease, affecting their sense of identity and self-worth. This can lead to social isolation, difficulty maintaining relationships, and limitations in participating in social activities. Therefore, social support and understanding from family and friends are crucial in coping with the disease.

The symptoms of hypermobility spectrum disorder, such as chronic pain and fatigue, can also limit individuals in their professional life. They may need to reduce work hours, switch to a different type of work, or take extended periods of leave. In these instances, support from employers and the ability to adapt work activities to their abilities are key in maintaining employment.

Navigating these challenges requires a multi-faceted approach, including medical treatment, psychological support, and adjustments in lifestyle and activities. By doing so, individuals with hypermobility disorders can continue to lead fulfilling lives while managing their symptoms.

Joint Hypermobility Syndrome Overview

Joint hypermobility syndrome is a condition characterized by unusually flexible joints, which can lead to a range of symptoms and challenges for those affected. Understanding the symptoms and causes of this condition is vital for early diagnosis and effective management.

Symptoms of Joint Hypermobility Syndrome

Individuals with joint hypermobility syndrome may experience a variety of symptoms, which can differ in severity and impact on daily life. Common symptoms include:

  • Pain in joints and muscles
  • Joint and ligament injuries
  • Tiredness (fatigue)
  • Bowel issues

These symptoms can lead to limitations in physical activities and may have social impacts as well. It is important to get diagnosed if these symptoms persist or cause distress, as early intervention can help manage the condition effectively [4].

Causes and Diagnosis of Joint Hypermobility Syndrome

Joint hypermobility syndrome is believed to be caused by a defect in collagen, the protein responsible for adding flexibility and strength to joints, ligaments, and tendons. This defect can lead to unusually elastic or flexible joints, which are more prone to injury and discomfort [4].

Diagnosis of joint hypermobility syndrome typically involves a physical exam to assess joint range of motion. Tests like the Beighton score, which assesses the flexibility of certain joints, and a hypermobility questionnaire, which asks about symptoms and personal/family medical history, are commonly used in the diagnostic process.

This condition is most common in children and young people, particularly affecting individuals assigned female at birth (AFAB) and people of Asian and Afro-Caribbean descent more often. It also tends to run in families, suggesting a genetic component to the condition [4].

Understanding the symptoms and causes of joint hypermobility syndrome is crucial for early diagnosis and treatment, which can significantly improve the quality of life for those affected. If you or a loved one are experiencing symptoms of this condition, it is important to seek medical attention for an accurate diagnosis and appropriate treatment plan.

Managing Joint Hypermobility Syndrome

Individuals diagnosed with joint hypermobility syndrome face unique challenges, as the condition can affect various aspects of their daily lives. However, with proper management and treatment strategies, they can effectively control the symptoms and lead fulfilling lives.

Treatment Options for Joint Hypermobility Syndrome

Treatment for joint hypermobility syndrome primarily focuses on protecting joints, managing pain, and strengthening muscles through exercise. Over-the-counter pain relievers such as acetaminophen, ibuprofen, and naproxen are commonly used for pain management. In some cases, stronger prescription medication may be required. Exercise plays a crucial role in strengthening the muscles that support the joints, thereby reducing the risk of joint dislocations and injuries. It is recommended that individuals with joint hypermobility syndrome work with a physiotherapist or a fitness professional experienced in hypermobility disorders to develop a personalized exercise regimen.

Complications and Genetic Factors

Joint hypermobility syndrome is a connective tissue disorder believed to be caused by a defect in collagen, the protein responsible for adding flexibility and strength to joints, ligaments, and tendons [4]. This condition can be a sign of a more serious underlying genetic condition, known as Heritable Disorders of Connective Tissue (HDCT). Rare medical conditions associated with joint hypermobility syndrome include Ehlers-Danlos syndrome.

The genes involved in the creation of collagen are believed to play a role in joint hypermobility syndrome. People with this condition have loose joints due to weak ligaments caused by a defect in their collagen.

Furthermore, complications of hypermobility disorders can include chronic pain, dysautonomia, gastrointestinal dysmotility, mast cell activation, and anxiety and phobic states.

Understanding the genetic factors and potential complications associated with joint hypermobility syndrome can help patients and their healthcare providers make informed decisions about treatment strategies. It is also important to monitor for signs of associated conditions, such as Ehlers-Danlos syndrome, to ensure appropriate care and management.

Living with Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders, marked by symptoms such as joint hypermobility, skin hyperextensibility, and generalized connective tissue fragility. It's a condition that not only affects physical health but also has profound impacts on psychological and social aspects of individuals' lives.

Impact on Daily Life

Living with EDS can be challenging due to the chronic pain and fatigue, which are among the most frequent symptoms experienced by patients. In many cases, fatigue is described as worse than pain, significantly impacting daily activities. Such fatigue is often linked to sleep disturbances, concentration problems, poor social functioning, and pain severity.

EDS also has a considerable impact on the social life of patients. They may experience social isolation, difficulty maintaining relationships, and limitations in participating in social activities. Having social support and understanding from family and friends is paramount in coping with the disease.

The professional life of those with EDS can also be affected due to the persistent symptoms. They may need to reduce work hours, switch to a different type of work, or take work leave for extended periods. It's crucial for employers to be supportive and flexible, allowing for adjustments in job roles and tasks to accommodate their abilities.

Challenges in Diagnosis and Treatment

Patients with EDS often face difficulties in obtaining an accurate diagnosis. This is largely due to a lack of awareness and understanding among healthcare professionals. Getting the right diagnosis is essential for patients to grasp their condition and adapt their lives accordingly [3].

Treatment of EDS focuses on managing symptoms and preventing complications. However, the heterogeneity of the disorder and the broad spectrum of symptoms make treatment a complex task. This often requires a multidisciplinary approach, involving various healthcare professionals such as rheumatologists, physical therapists, and psychologists.

Living with EDS is undoubtedly a challenge, but with the right support and understanding, patients can lead fulfilling lives. It's important for healthcare professionals, family, friends, and employers to recognize the impact of EDS and provide the necessary support to those living with this condition.







steven zauderer

CEO of CrossRiverTherapy - a national ABA therapy company based in the USA.

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