For many, being “double-jointed” is seen as a party trick a way to bend and stretch limbs in ways that seem impossible. However, for some people, this unusual flexibility is much more than a harmless curiosity. In fact, it can lead to a wide range of health problems, from chronic pain to debilitating conditions that affect multiple systems in the body.
One such individual is Jacqueline Luciano, a registered nurse from Chicago who has spent much of her life dealing with mysterious injuries and ailments. Chronic pain, fatigue, dizziness, and joint dislocations became an all-too-familiar part of her daily life. Even tasks like sitting at a desk could trigger debilitating headaches. But it wasn’t until late 2021, when she developed long COVID, that her condition worsened to the point where she had to leave her job. After seeking medical help, Luciano discovered that her symptoms were linked to her hypermobility, a condition commonly referred to as being “double-jointed.”
What is Hypermobility?
Hypermobility refers to the ability of joints to move beyond their normal range of motion. While some individuals experience no issues beyond being able to perform unusual stretches or contortions, others suffer from serious health problems due to the weakened connective tissue that underlies the condition. This connective tissue, responsible for holding joints and organs together, can be stretched or weakened in hypermobile individuals, making them prone to a variety of conditions.
The term “hypermobile” is often used interchangeably with Ehlers-Danlos Syndrome (EDS), a genetic disorder that affects the body’s connective tissues. However, not all hypermobile individuals have EDS. In fact, research suggests that around 3 to 4 percent of the general population has some form of joint hypermobility, with symptoms ranging from benign to more severe, as seen in conditions like EDS or hypermobility spectrum disorder (HSD).
The Hidden Dangers of Hypermobility
While hypermobility may seem like an odd quirk, its implications for health can be far-reaching. For many individuals with hypermobile joints, the issue is not the ability to stretch limbs but the underlying weakness of their connective tissue. Over time, this weakness can lead to joint instability, pain, and injuries. Chronic conditions such as joint dislocations, ligament sprains, and even gastrointestinal issues may arise as a result.
Furthermore, recent research has shown that hypermobility can be associated with other systemic issues. Conditions like chronic fatigue syndrome, postural orthostatic tachycardia syndrome (POTS), and mast-cell activation syndrome (MCAS) are often seen in hypermobile individuals. This is because connective tissue is found throughout the body, including in organs like the heart, gastrointestinal system, and immune cells. When the connective tissue is weak or dysfunctional, it can cause a cascade of problems affecting various systems.
For example, weakened connective tissue in the digestive tract may result in symptoms like irritable bowel syndrome (IBS) or unexplained nutrient deficiencies. Likewise, blood vessels that are too stretchy may not be able to properly circulate blood to the brain, leading to brain fog, dizziness, and fatigue.
The Link Between Viruses and Hypermobility
Another key issue faced by hypermobile individuals is their heightened vulnerability to viral infections. Conditions like long COVID, which emerged following the pandemic, have revealed that viruses can exacerbate symptoms of hypermobility. Viruses such as SARS-CoV-2 (the virus responsible for COVID-19) have been shown to affect connective tissue, either by weakening collagen or by triggering inflammation that further damages these tissues. For those with hypermobility, this can lead to worsening symptoms, including joint pain, fatigue, and even the development of hypermobility where none previously existed.
The impact of viral infections on hypermobile individuals is still being studied, but early research suggests that these infections can make pre-existing connective tissue issues worse, contributing to conditions like chronic fatigue syndrome and POTS.
Managing Life with Hypermobility
For those with hypermobility, managing the condition often requires a comprehensive approach that involves physical therapy, pain management, and sometimes lifestyle adjustments. In Luciano’s case, her journey toward diagnosis was long and challenging. It took more than a year before she found a doctor familiar with hypermobility and long COVID. Even then, she had to wait much longer to receive a formal diagnosis of hypermobile EDS.
Despite the challenges, there is hope. Awareness about hypermobility and its associated conditions is growing, with more people speaking out about their struggles. Celebrities like Billie Eilish and author Rebecca Yarros have shared their experiences with hypermobility, helping to bring attention to the need for better diagnosis and treatment for those affected by these conditions.
In conclusion, while being double-jointed might seem like a quirky trait, it can have serious health implications. For individuals with hypermobility, the weakness in their connective tissue can lead to chronic pain, systemic disorders, and a greater vulnerability to viral infections. As research continues to uncover the links between hypermobility and other health issues, it’s crucial for both healthcare providers and patients to be aware of the potential risks and seek appropriate treatment.
