Are you someone who has always been extra flexible? Have you dislocated joints before, or do you tend to injure yourself more often than your friends?
Hypermobility refers to the increased flexibility and mobility of tissues and joints, allowing them to be stretched and moved beyond what is considered a normal range of motion. Being extra flexible may sound like a good thing, and for some people, it is! However, increased flexibility can also mean less stability, less strength and higher risk of injuries, as well as various other health complications.
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome (EDS) is a hypermobility condition caused by genetic defects in collagen, a substance that provides support and strength to connective tissues, allowing them to stretch. Collagen is found in every system in the body, including the skin, muscles, ligaments, veins, arteries, nerves and organs, and, as such, EDS is considered a whole-body condition. EDS is present from birth and will often affect multiple generations in the same family. There are 13 different types of EDS, the most common being hypermobile EDS (hEDS), affecting approximately 1 in every 3,100 to 5,000 people.
What are the symptoms of EDS?
Hypermobility and EDS exist on a spectrum, and symptoms look different for every person. Some of the common symptoms of hypermobile EDS include:
- Increased flexibility – often people who are hypermobile have difficulty “feeling a stretch”
- Joints that feel “loose” and a history of dislocations or subluxations
- Difficulty building and maintaining muscle mass
- Pain in multiple areas throughout the body, including nerve pain
- Sleep disturbances, often related to widespread pain
- Delayed healing
- Pelvic floor and bladder dysfunction
- Gastrointestinal issues
- Cardiovascular conditions (e.g. POTS, mast cell activation syndrome)
- Migraine symptoms (e.g. brain fog, positional headaches, neck stiffness, light sensitivity, nausea, dizziness, etc).
The other 12 types of EDS are much rarer in comparison to hypermobile EDS, but often involve more serious health complications, including:
- Stretchy, fragile skin
- Organ conditions
- Dental issues such as early-onset gum disease
- Vision and hearing problems
For someone with EDS, recovering from injuries can be particularly difficult. Having a background of hypermobility and low muscle strength means it will often take longer to recover from an injury and to rebuild the strength of the affected joints and muscles. This means an increased risk of repeating the injury, which can lead to a vicious cycle.
How is Ehlers-Danlos Syndrome diagnosed?
Although EDS is becoming more well-recognised, it is significantly under-researched and therefore under-diagnosed. Sadly, the average time to diagnosis for EDS is more than 15 years from when symptoms are first reported.
The hypermobile zebra
The symbol of hypermobility and EDS is a zebra – why? When we hear hoofbeats, we automatically think it’s a horse, when in actual fact it may be a zebra. EDS shares many similarities with a variety of other, more common, health conditions. The zebra represents the frustratingly common narrative of people being misdiagnosed with a more common condition, rather than a rarer condition such as EDS.
Some of the conditions that share similarities with EDS include:
- Fibromyalgia
- Depression and/or anxiety
- Neurological issues
- Discoordination disorder in children
- Functional neurological deficit
- Chronic pain
- Chronic regional pain syndrome
Hypermobile EDS can be diagnosed by a GP; however, all 12 other types of EDS usually require referral to a specialist, such as a rheumatologist. The diagnostic criteria are different for each type of EDS, but generally considers; symptoms, clinical tests, family history and genetic testing, as well as the exclusion of alternative diagnoses.
So, what’s the treatment?
The exact genetic cause of hypermobility and EDS is still unknown, and therefore, there is no specific genetic treatment. Given symptoms will often encompass multiple areas of the body, treatment generally requires input from multiple health practitioners with different specialities. This may include a rheumatologist, GP, physiotherapist, occupational therapist, cardiologist or neurologist, although it will be different for every person.
How can physiotherapy help?
Initially, a physiotherapist can perform a short screening test for general hypermobility and help guide whether further investigation for EDS may be necessary. In terms of treatment, physiotherapy for hypermobility and EDS can include:
- Management of acute injuries or acute pain – this can be done through manual therapy, education regarding management strategies and gentle exercises
- Rehabilitation of injuries – your physiotherapist will help guide you through a specific plan tailored for hypermobility, with consideration of any other health concerns
- Bracing, splinting and mobility aids
- Guidance on return to sport – this may include helping you get back to the sport and activities you love, or advice if you’re not sure what type of sport or activity is appropriate based on your symptoms and history
Although Ehlers-Danlos syndrome is a complex condition that can be hard to diagnose, there is much that can be done to help ease symptoms and improve quality of life. For further information, visit The Ehlers-Danlos Society at https://www.ehlers-danlos.com/ or consult your GP or physiotherapist about your symptoms.
