Hypermobile Ehlers Danlos Syndrome, hEDS for short, is the most common form of EDS. It accounts for approximately 80 – 90% of all EDS cases. This type of EDS is a connective tissue disorder which appears to be hereditary (inherited from at least one parent). The most prominent symptoms are joint hypermobility and instability which can lead to chronic pain.
People with hEDS may also display a variety of other symptoms affecting many other areas of their body. For example: skin hyperextensibility, head aches & gastrointestinal issues.
Hypermobile EDS diagnosis
To be diagnosed with Hypermobile Ehlers Danlos Syndrome, there is currently no genetic testing available. Although there are genetic tests for other types of EDS, Hypermobile Ehlers Danlos Syndrome can only be diagnosed through assessment. This is why people are often diagnosed with Hypermobility Spectrum Disorder (HSD) instead. The set criteria that must be met to receive an hEDS diagnosis takes into account medical records, family history and a physical assessment.
What is HSD (Hypermobility Spectrum Disorder)?
HSD (Hypermobility spectrum disorder) is where an individual displays symptomatic joint hypermobility that cannot be explained by any other conditions. For example, Ehlers Danlos Syndrome or Marfan syndrome. Due to their similarities and the additional criteria for hypermobile Ehlers Danlos Syndrome, patients who have hEDS are regularly first misdiagnosed with HSD.
The Beighton scale
The Beighton scale is an assessment-based test which measures joint hypermobility. The test examines the movement in the following joints:
- Base of thumbs
- Elbows
- Knees
- Knuckles and baby fingers
- Spine
The Beighton scale is used to help diagnose a handful of conditions. You can score up to 9 on this assessment and gain 1 point per movement that moves past a ‘normal’ range. According to the Cleveland clinic, a Beighton score higher than 4 is deemed hypermobile.
For further information on what movements are required for the Beighton scale assessment, take a look at this page from the Ehlers Danlos society.
Many people believe that they have hEDS, however, do not score more than 4 on the Beighton scale. The joints assessed are limited to the five above and therefore the individual may not meet the criteria for diagnosis, even though they display hypermobility in other joints not included.
Another scale that is occasionally used is the Hospital Del Mar scale (Bulbena). Antonio Bulbena presented this scale during his research in 2009, analysing the relationship between anxiety and joint laxity in school children. As this measures the flexibility of 10 joints, it may provide a more comprehensive assessment for a hypermobility diagnosis. It is however less commonly used amongst medical professionals.
Potential hEDS Comorbidities
When people have two or more conditions at the same time, these are called comorbidities. Those with hEDS are at higher risk of also having one or more other conditions. Here are some of the conditions that may be comorbid with hEDS sufferers:
- MCAS – Mast Cell Activation Syndrome – A condition which presents itself somewhat like an allergic reaction.
- Chronic Fatigue Syndrome – Individuals with this condition experience extreme tiredness, sleep abnormalities and pain which do not get better with rest.
- Dysautonomia – Group of disorders affecting the autonomic nervous system. Including orthostatic hypertension (OH) and postural orthostatic tachycardia syndrome (POTS).
- Fibromyalgia – Musculoskeletal pain which also includes fatigue, mood and memory issues. Often triggered by psychological stress.
Living with hEDS
Quality of life varies immensely amongst those living with hEDS. As mentioned above, EDS is a scale. Each individual will have a different set of symptoms in varying levels of severity. This mix will require a personalised treatment plan that can’t be one-size-fits-all.
EDS is an untreatable life-long condition. Therefore, managing and treating the symptoms is the only way to improve quality of life.
These are some things that people can include to help manage these symptoms:
- Exercise
- Physio Therapy / Occupational therapy
- Diet changes
- Accupunture
- Physical braces
- Pain killers
- Using cushions / pillows to get comfy when resting
- Compression clothing
- Massage
- Staying hydrated
Using exercise to improve hEDS symptoms
Exercise delivers many health & fitness benefits to anyone that works out regularly. As well as many cardiovascular and Musculo-skeletal benefits, it also improves muscle strength and joint stability. It is therefore not surprising that including exercise is the number one change that hEDS and HSD sufferers can do to improve their physical symptoms.
Resistance training isn’t just about growing the large visible muscles that we associate with bodybuilding. Popular well-known exercises will also train the smaller stabilising muscles around joints, but with the addition of other specific & targeted exercises, the problematic areas of the body can benefit further. Tighter more stable joints are less likely to sublux or fully dislocate. Improved muscle tone will reduce the amount of excessive range of movement available at the joint.
Although stretching is heavily debated for hEDS and HSD sufferers, the guarding mechanism does still create areas of tension (tight muscles). It may not be beneficial to stretch muscles that are clearly elongated and contributing the hyperextension, however stretching muscles that are instead causing pain and postural issues will be beneficial. It is important to pay special attention to what is the joints “normal” or safe range or movement and do not stretch past this.
Proprioception is an individual’s awareness of where each part of their body is and how it moves. All forms of exercise, flexibility and other training such as the integral movement method will improve peoples’ proprioception as long as it is done with awareness or with feedback. This is particularly important for those with Ehlers Danlos Syndrome or Hypermobility Spectrum Disorder as this improved awareness will help them adjust their joint movement to a more normal range and reduce risk of injury. On top of this, for reasons unknown, it appears that those with EDS and HSD have a lower proprioceptive accuracy compared to control groups – according to this study published on the National Library of Medicine.
Integral movement method
Endorsed by doctors and physiotherapists, the integral movement method has already helped hundreds of people with EDS. It’s a no pain, no strain approach to getting people moving in a better way. Pain and looseness in the joints leads to the body guarding and tensing up as a protection response. Unfortunately, over time, this leads to increased muscle tension, imbalances and more pain. As sufferers lose their strength and fitness, they will become less mobile and potentially gain bodyfat.
The integral movement method is a way to start reversing this downward spiral, start moving more and eventually, exercising again. By teaching your body how to move in the correct way, it will release tension and move more freely.
Seraphina is a qualified Personal Trainer who specialises is coaching people with EDS / HSD. She is certified in the Integral Movement method and listed on the Ehlers Danlos Society directory of professionals. A long-term hEDS sufferer herself, she is devoted to helping others improve their strength and mobility.
Request a FREE call-back from Seraphina to see how she can help:
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