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Hypermobility and Ehlers-Danlos Syndrome


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Have you ever been told that you have "double-jointed" or unusually flexible joints? While having some extra flexibility can be fun, for some individuals, it may be a sign of a condition called joint hypermobility. In more severe cases, it can be associated with Ehlers-Danlos Syndrome (EDS). In this blog post, we will explore hypermobility, its connection to Ehlers-Danlos Syndrome, and how physical therapy can help manage symptoms and improve quality of life.


1. Understanding Joint Hypermobility:


Joint hypermobility refers to joints that move beyond the normal range of motion. It is often caused by differences in the structure or composition of the connective tissues, including collagen, which provide support to the joints. While some people may have hypermobile joints without any associated symptoms or problems, others may experience joint pain, instability, or other complications.


2. Ehlers-Danlos Syndrome (EDS):


Ehlers-Danlos Syndrome is a group of genetic disorders that affect the connective tissues, including those in the joints, skin, and blood vessels. There are several subtypes of EDS, with the hypermobile type being one of them. People with hypermobile EDS may have joint hypermobility, joint pain, skin hyperextensibility, and other related symptoms.


In hypermobile EDS, individuals often experience joint hypermobility, which means their joints have a greater range of motion than usual. While this increased flexibility may sound beneficial, it can actually lead to joint instability and pain. The joints may easily move beyond their normal range, leading to frequent dislocations or subluxations (partial dislocations). This can cause significant discomfort and impact daily activities.


In addition to joint hypermobility, people with hypermobile EDS may also exhibit other symptoms. Skin hyperextensibility is a common characteristic, where the skin is unusually stretchy and may be prone to bruising. Individuals may also experience chronic joint pain, muscle weakness, easy fatigue, and problems with balance and coordination. These symptoms can vary in severity from person to person.


It's important to note that while EDS is a genetic condition, the severity and specific symptoms can differ among individuals. A proper diagnosis from a healthcare professional, such as a geneticist or rheumatologist, is essential to determine the subtype and develop an appropriate management plan.


Living with hypermobile EDS can be challenging, but there are ways to manage the symptoms and improve quality of life. Physical therapy plays a crucial role in the management of EDS, helping individuals strengthen the muscles around the joints, improve stability, and reduce pain. A physical therapist can design a personalized exercise program that focuses on gentle strengthening exercises, joint stabilization techniques, and proprioceptive training to improve balance and coordination.


3. Impact on the Body:


Joint hypermobility and EDS can affect various aspects of your body and daily life. Common symptoms may include:


- Joint pain and stiffness: Hypermobile joints can become painful, especially with repetitive movements or prolonged periods of activity.


- Joint instability: The excessive joint movement can lead to joint instability and a higher risk of joint dislocations or subluxations (partial dislocations).


- Fatigue: Dealing with chronic pain and joint instability can be exhausting and contribute to feelings of fatigue.


- Skin issues: In EDS, the skin may be more fragile, stretchy, or prone to bruising.


- Digestive issues: Some individuals with EDS may experience gastrointestinal problems, such as reflux or constipation.


- Cardiac and vascular issues: Certain subtypes of EDS can also involve abnormalities in the heart valves or blood vessels.


4. The Role of Physical Therapy:


Physical therapy is an essential component of managing joint hypermobility and Ehlers-Danlos Syndrome. A physical therapist with expertise in EDS can:


- Assess your joint mobility, stability, and functional limitations.


- Develop a personalized treatment plan that may include exercises to strengthen the muscles surrounding the hypermobile joints, improve joint stability, and enhance overall body mechanics.


- Provide education on joint protection techniques, including proper body mechanics and ergonomics.


- Offer guidance on activity modification, pacing strategies, and energy conservation to manage fatigue.


- Recommend assistive devices or orthotics to support the joints and improve function.


- Help address associated issues, such as postural alignment, muscle imbalances, and pain management.


Remember, physical therapy can play a crucial role in managing the symptoms of joint hypermobility and Ehlers-Danlos Syndrome, improving function, and enhancing quality of life. If you suspect you have hypermobile joints or have been diagnosed with EDS, consulting with one of our great physical therapists can provide valuable insights and support.


References:

- Castori M, et al. Natural history and manifestations of the hypermobility type Ehlers-Danlos syndrome: a pilot study on 21 patients. Am J Med Genet A. 2010 Jun;152A(6):556-64. doi: 10.1002/ajmg.a.33277.

- Hakim A, et al. Joint hypermobility syndrome: recognition and management for the rehabilitation professional. Phys Ther Rev. 2009;14(3):195-202. doi: 10.1179/174328809X448436.

- Rombaut L, et al. Musculoskeletal complaints, physical activity and health-related quality of life among patients with the Ehlers-Danlos syndrome hypermobility type. Disabil Rehabil. 2010;32(16):1339-45. doi: 10.3109/09638281003649932.

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