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Hypermobility and EDS

One connective tissue disorder that can cause hypermobility is, Ehlers-Danlos syndrome (EDS). EDS is a rare genetic condition that affects the body’s connective tissues, including the skin, joints, and blood vessels. Hypermobility in EDS can affect nearly every joint from your large hip joint, to your small finger joint. The complications of joint hypermobility in EDS can be significant. For one, people with EDS are at a higher risk of joint dislocations and subluxations (partial dislocations). These can be extremely painful and can lead to further joint damage if left untreated. Additionally joint hypermobility can contribute of chronic pain and fatigue, as the muscles surrounding the joints…

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Articles of Interest

Ehlers-Danlos Syndrome, Hypermobility, and Mast Cell Activation Syndrome: The Connection

Have you ever noticed that you have hypermobile joints or that you are too flexible? Do you injure yourself easily or are experiencing pain from activities that are easy for others? You may have Ehlers-Danlos syndrome (EDS). Recent research suggests that EDS and mast cell activation syndrome (MCAS) can co-occur and affect one another. Your mast cells may hold the answer to some of your symptoms your EDS diagnosis can’t explain. Recognizing the connection between EDS and MCAS may be the key to understanding your symptoms and finding the best treatment options.

hEDS, JHS and HSD

Although there are some differences between the diagnostic terms used, at the moment everyone within this group may experience the same potential symptoms, the same linked conditions, and require the same symptom-based treatment and management, with an awareness that a heritable disorder of connective tissue may be present.

How are Hypermobility and EDS diagnosed?

This is one of the most prevalent types of EDS. Individuals with hEDS often exhibit joint hypermobility, which means their joints can move beyond the normal range. Picture a gymnast’s flexibility, but with potential repercussions like joint pain, frequent dislocations or subluxations, and that unsettling sound of clicking joints. But it doesn’t stop there. Fatigue, easy bruising, digestive issues, dizziness, and even bladder control problems can be part of the package. Sounds challenging, doesn’t it? But remember, with the right care and management, these symptoms can be mitigated.

How Do Doctors Assess Joint Hypermobility in EDS?

The most common test to assess joint hypermobility is the Beighton scoring system, which uses a nine-point scale to measure joint hypermobility. Doctors assess five different joint movements, four of them on both sides of the body. The first movement involves the patient placing their hand, palm down, on a table.

Hyperlax Ehlers-Danlos Syndrome: Benign Hypermobility?

Hypermobile EDS (equivalent to benign joint hypermobility syndrome) is characterized by skin changes (soft, elastic, abnormal scarring), joint pain, myalgia, tendonitis and recurrent subluxations. In children it often delays walking, leads to body contortions (“rubber children’) or ‘juggling acts” with hands.

Hypermobile EDS vs. Hypermobility Spectrum Disorders

hEDS, which was also known as EDS type 3 or EDS-hypermobile type (EDS-HT), is the most common form of EDS. Its estimated prevalence is between one in 5,000 and one in 20,000 people worldwide. Symptoms range across a wide spectrum and include joint hypermobility, stretchy and “velvety” skin, chronic pain in the bones and muscles, osteoporosis, osteoarthritis, gastrointestinal (GI) tract issues, heart and blood vessel issues, and female-related health issues such as painful menstruation and pregnancy complications. There currently is no definitive genetic test to confirm hEDS. So, doctors reach a diagnosis through clinical evaluation.

Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Hypermobile Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders are the most common symptomatic joint hypermobility conditions seen in clinical practice. The 2017 International Classification of the Ehlers-Danlos syndromes replaced previous terms for symptomatic joint hypermobility with hypermobile EDS and introduced the term hypermobility spectrum disorders for patients not meeting diagnostic criteria for hypermobile EDS. Both are diagnosed by applying the 2017 diagnostic criteria

Hypermobility and EDS: What is the best diet?

So, whether you’re new to the EDS community, a long-time warrior, or a loved one seeking to understand and support in the areas of hypermobility/Ehlers-Danlos syndrome diets, this blog is for you. We’ll delve into the role of nutrition in EDS and hypermobility management, address common nutritional deficiencies, and provide practical diet recommendations and strategies.

Joint hypermobility and EDS/HT Overview

The current criteria for a diagnosis of Ehlers-Danlos syndrome (hypermobile type) are illustrated in table ​table but are non-specific. For a diagnosis to be made an individual needs to have one of the major criteria of a Beighton score of ≥ 4/9 or "Skin involvement (hyperextensibility and/or smooth, velvety skin)".

Managing hEDS & HSD Flares

The term “Flare” in hEDS and HSD is typically used by patients in reference to an increase in symptoms related to any aspect of the syndrome; pain, GI distress, MCAS reactions, dislocations, subluxations, cardiovascular challenges, dysautonomia symptoms, insomnia, fatigue, brain fog, a sense of being “wiggly” or dangerously clumsy and more.

What are hypermobility, JHS and EDS?

Hypermobility is quite common in the general population, particularly in children and is not usually a problem on its own. Sometimes it is associated with long-term, widespread pain and other problems. This is called symptomatic hypermobility and can be a sign of joint hypermobility syndrome (JHS) or connective tissue disorders such as Ehlers-Danlos syndrome (EDS).

Resources

Ehlers-Danlos Support UK

Hypermobile Ehlers-Danlos syndrome (hEDS), which used to be known as the hypermobility type or type 3, is thought to be the most common genetic connective tissue disorder. There is no up-to-date research to tell us exactly how frequently it occurs. It can be inherited from a parent with the same faulty gene, alternatively someone can be born with a new mutation so that the condition is occuring in their family for the first time. Recently some changes were made to the way hypermobile Ehlers-Danlos syndrome is diagnosed.

SEDSConnective

We are the leading hypermobility (EDE HSD ) and neurodivergent ( Autism, ADHD, Dyspraxia TS Dyslexia +) charity. We support members, followers, families, friends and allied professionals.

GeneReviews

Hypermobile Ehlers-Danlos syndrome (hEDS) is characterized by generalized joint hypermobility, joint instability, pain, soft and hyperextensible skin with atrophic scars and easy bruising, dental crowding, abdominal hernias, pelvic organ prolapse, marfanoid body habitus, mitral valve prolapse, and aortic root dilatation.