Hypermobility and Ehlers-Danlos Syndrome (EDS)

Joint hypermobility is the term used to describe increased mobility and range of movement in a joint.

People with joint hypermobility have an unusually large range of movement (ROM) in their joints.

Hypermobility is not rare – it’s estimated to affect one in five people.

It may affect only a few joints or can be spread throughout the body.

Joint hypermobility is most common in children and females.

When people get older it tends to lessen as their joints get stiffer.

Many people with joint hypermobility have no symptoms or medical consequences and carry on as normal without the need for any medical intervention or support.

For some people, it can be advantageous, for examples for dancers, gymnasts and athletes.

For others, without proper management, it can be debilitating.

Joint hypermobility is caused by defects in the protein of connective tissue that give the body its strength.

This defect can affect any connective tissue in the body and in particular the collagen in tissues such as ligaments and tendons.

The defect makes the ligaments and tendons ‘stretcher’ and this, in turn, makes the joints they connect to and support, laxer.

Around 75% of people with joint hypermobility have inherited the condition.

People with hypermobile joints lack strength and stability compared with people with non-hypermobile joints.

Increased ROM and lack of support mean people can bend and twist joints more than usual, putting them at risk of injury or partial and full dislocation.

Symptoms can include:

  • Slow Injury recovery
  • Poor posture
  • Poor proprioception
  • Joint stiffness
  • Bracing
  • Pain (this can be acute and specific, or chronic and widespread)
  • Clicking in the joints
  • Fatigue
  • Thin and/or stretchy skin
  • Digestive problems such as irritable bowel syndrome and constipation

Slow Injury recovery – Injury recovery can be slower for people with joint hypermobility. In some cases, the injury may not fully recover due to repeated microtrauma. This means the person is at risk of the injury happening again.

Poor posture – Muscles tire more easily in hypermobile joints as they have to work harder to support the joint. Hypermobile people often dislike sustained postures and have poor postural alignment as they tend to rest at the end of the joint range. Although they will be able to adopt a good standing or sitting position at first, they will not be able to hold it for long.

Poor proprioception – Poor proprioception can be considered both a cause and symptom of joint hypermobility. Proprioceptive sense refers to the sensory input and feedback that tells us about movement and body position. Its receptors are located within our muscles, joints, ligaments, tendons, and connective tissues.

If people aren’t certain where their joint is within a space, it may lead to them overstretching. Equally, if people have overstretched structures within a joint, it can then lead to poor proprioception.

Joint stiffness – People may suffer from joint stiffness – which may seem unusual, given the increased range of movement in joint hypermobility. However, it’s often subjective and therefore stiff compared with someone’s ‘normal’ feeling. I feel stiff a lot.

Stiffness may be caused by a tight muscle or a muscle spasm – possibly due to overusing global muscles or by a build-up of fluid in the joint as it tries to repair the damage.

Bracing – ‘Bracing’ is a term given to breath-holding. It is a common symptom of joint hypermobility where people try to use breathing to help stabilise themselves and produce more power

Varying symptoms – For people who are symptomatic, the type and severity of the symptoms can vary from person to person – even from day to day for the same person.

Many people with joint hypermobility do not experience any of the symptoms we have mentioned here. If symptoms are present alongside joint hypermobility then it is known as Joint Hypermobility Syndrome.

Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and varied both in how they affect the body and in their genetic causes.

Hypermobility spectrum disorder is a group of conditions related to joint hypermobility. HSD is intended to be diagnosed after other possible answers are excluded such as EDS.

HSD and EDS can be equal in severity, both need similar management, validation and care.

There are many different levels:

  • Mild – functioning, normal, not too much pain.
  • Moderate – some issues, co-morbidities, up and down days.
  • Severe – wheelchair, hospitalisations, fed by tube.

EDS impacts 1 in 5000 people, HSD is more common.

  • Joint instability / musculoskeletal pain
  • Chronic pain
  • Fatigue
  • Postural Tachycardia Syndrome (POTs)
  • Headaches / migraines / TMJ
  • Skin is involved in most types (skin fragility, hyperextensibility, stretch marks, bruising).
  • Digestive issues – IBS, acid reflux, nausea, bloating
  • Lungs – asthma, pneumonia, bronchitis, allergies
  • Heart – mitral valve prolapse, palpitations, fainting, dizziness
  • Lack of fine and gross motor control
  • Autonomic nervous system – heart rate, blood, pressure
  • Exercise intolerance
  • Mast Cell Activation Disorder
  • Subluxations/dislocations
  • Stiffness and yet flexible
  • Flat feet, gait issues
  • Impaired proprioception
  • Emotional and psychological – anxiety, tension, stress, fear of movement, lack of confidence, feeling of isolation

Pilates is a very good method of exercise for joint hypermobility. This is because the medical recommendations for treatment and management of the condition closely related to the principles Pilates;

  • Centring
  • Concentration
  • Control
  • Precision
  • Breath
  • Flow
  • Awareness
  • Stamina
  • Relaxation

I was convinced I was not hypermobile until I studied the condition.

My mother was a gymnastics coach and I was brought up in an environment where flexibility was normal. I always had a real problem developing strength and felt a lot of pain. As a consequence, I did not train to a competing level and decided at 14 to start teaching instead.

As an adult, after I had dealt with my anxiety related disorders I decide I wanted to focus on building my strength and that is when I decided to become a Personal Trainer and take up weight training. I loved the training, but I spent most the time in pain and later developed severe back, glute and shin pain.

I was persistent and didn’t want to give up, but after a year of being in pain, I made the decision that it wasn’t for me. I had lost a lot of my flexibility during training, I felt tight all the time and I missed being able to move freely. I then decided to focus on Yoga and Pilates.

I have to say that at the age of 35 I have developed more strength and flexibility through Pilates and Yoga training than I have ever had in my whole life, and with it, my body feels mobile, strong, free and light.

How have my symptoms changed?

  • Slow Injury recovery: This is much better and I do not get injured as often.
  • Poor proprioception: Improved.
  • Decondition quickly: My body can become deconditioned and weak very quickly and have to keep on top of my strength training within my Yoga and Pilates routine.
  • Joint stiffness: This is now manageable, whereas before it was exhausting. I have to stretch daily.
  • Bracing: I have to be mindful of this, but now I am aware, I can be.
  • Pain (this can be acute and specific, or chronic and widespread): I am aware that I will experience pain/discomfort, but I also know this is tempory and I am more mindful not to push myself to my end range when experiencing new exercises. I take breaks and reduce reps. When I am in pain I make sure I take time to rest. Its all about balance.
  • Clicking in the joints: They are just clicky joints, it’s ok.
  • Fatigue: I manage this, mostly it’s ok as long as I do not push myself too hard and I rest when I feel I need to.
  • Thin and/or stretchy skin (skin fragility, hyperextensibility, stretch marks, bruising): I always get comments that my skin is very soft. I got stretch marks when I came into puberty and I used to bruise very easily. The bruising has now significantly reduced since doing Yoga and Pilates.
  • Digestive problems such as irritable bowel syndrome and constipation: I studied nutrition to learn how to be kind to my digestive system.
  • Lack of gross motor control: Improved
  • Subluxations/dislocations:  This has not been an issue; not since my father pulled my arm out my socket while swinging me around when I was a little girl ;-).
  • Flat feet: I am aware of my arches and work on exercises to keep these lifted.
  • Emotional and psychologicalanxiety, tension, stress, fear of movement, lack of confidence, feeling of isolation: These are all feelings I have experienced and have addressed over time.

Education is Key for all and having studied hypermobility I feel empowered to protect my own body and help the others around me.

We know that is it never a one rule fits all approach.

At BeMoore we have a range of skills to help manage your hypermobility or EDS and help you to lead a happier more pain-free life!

We will look at a wide range of areas and tailor a programme to suit your needs.

Training is advised on an individual basis and can be accessed through Private Coaching, Classes and Workshops.

If you would like to find out more, please contact me.