HSD and hEDS

Hypermobility is a spectrum and it ranges from those who describe themselves as having double joints to those who have been diagnosed with the various collagen disorders. The statistics on the number of the population who are hypermobile vary significantly from 10-30%, with women more likely to be so than men.

What is Hypermobility, HSD & hEDS?

Hypermobility is excessive range of movement in a joint or in multiple joints. For many people this causes no issues and for others it can create major issues in the body. Hypermobility spectrum disorder (HSD) is when having this excess range of motion can cause pain, weakness, poor balance, recurring sprains and slow to heal injuries as well as dysfunction in other systems in the body. For those with extreme issues they may have a genetic condition called hypermobile Ehlers Danlos Syndrome (hEDS). Hypermobility is caused due to a change in collagen. Collagen is the substance that makes up our ligaments which is why people who have hypermobility tend to have extra flexible joints. The job of the ligaments is to bind our bones in stable contact with each other. If the collagen is more elastic than it should be it allows for excessive movement of the joints. This can place a strain on the surrounding muscles and can lead to pain and negative compensation. 

Collagen makes up many other structures in the body. Hypermobility may also affect any body part that is formed by collagen e.g. ligaments that suspend the bladder and stomach, the heart valves and the walls of veins.

What are the signs and symptoms of HSD and hEDS?

  • Fatigue
  • Difficulty sleeping
  • Joint injuries
  • Dislocations/ subluxations
  • Poor posture
  • Joint Stiffness
  • Hyperextension in joints e.g. knees, elbows, fingers
  • Low blood pressure/ POTS
  • Palpitations
  • Anxiety
  • Pelvic floor dysfunction
  • Uterine or bladder prolapse
  • Mitral valve prolapses
  • Pain
  • Weakness
  • Poor balance
  • Clumsiness
  • Chronic Ankle sprains
  • Slow to heal injuries
  • Systemic medical conditions e.g. IBS, GERD
  • Headache

There are many signs and symptoms of Hypermobility Spectrum Disorder. The degree of severity is wide, ranging from asymptomatic to total disability. It can affect single or multiple joints. Interestingly, an aspect of hypermobility is a sensation of joint stiffness. Patients often express the desire to stretch.

Persistent pain is a common symptom. Acute pain can be seen with sprains, subluxation and dislocations. However, people with hypermobility frequently develop a persistent pain cycle. Injury will cause pain leading to impaired motor control and this will cause further injuries which will create more pain. Improving motor control is the key to breaking this cycle. This is done through proprioceptive exercise.

Educating a spinal patient

Chronic fatigue is another common symptom of HSD. Fatigue will often be present, despite the amount of sleep. Local muscle fatigue can be attributed to over activation of larger external muscles compensating for weak or poor endurance of the deep, stabilizing postural muscles.

There can also be a psychological aspect to hypermobility. Anxiety, stress, depression and panic attacks are  often reported as an issue. The support of a psychologist or a counselor can not be underestimated and we find patients who are well supported psychologically and emotionally do much better in their rehabilitation.

People with HSD often spend years chasing their symptoms and often go undiagnosed. It is best to understand the source of the problems and develop a rehabilitation approach that takes this into account.

How to test for HSD and hEDS?

Excessive joint mobility is tested using the Beighton Score. It is a score out of 9. 

  • Touching your palms to the floor while keeping your knees straight (1 point)
  • Hyperextending Knees (1 point per joint)
  • Hyperextending elbows (1 point per joint)
  • Bending your small finger back further than 90 degrees (1 point per joint)
  • Bending your thumb back to touch your forearm (1 point per joint)

While this is a great indicator of hypermobility, your score can change over time or after injuries and may not be a true reflection of your hypermobility. A rheumatologist is needed to decide if it is a diagnosis of HSD or hEDS. It is important to seek out a specialist in hypermobility for a correct diagnosis as other factors will need to be taken into consideration. 

Hypermobily Tests Drawing and accessories

I have Ehlers Danlos Syndrome hypermobility type. During lockdown my body deconditioned completely and so I bounced from one injury to the next. I have been seeing Niamh since November 2021 and the difference in my body is unbelievable.

Aislinn, age 20

Treatment Options

Physiotherapy is highly recommended. At McGowan Physio we will complete a thorough assessment. We start by allowing you to tell your story and explain your concerns. Following this we will ask some questions to get a clearer idea of what is going on. We then complete a physical assessment and test out your joints and basic muscular endurance. We will then explain our diagnosis and create a treatment plan taking your goals into account. A feeling of safety is very important for hypermobile patients. We begin in the safest positions (supine, side lying and prone) so that the patient can learn where their bones are and how to access their core muscles, without the stress of gravity. As goals are achieved we can increase the challenges into more functional activity. Before long the patient will be self-managing through the form of exercise they choose that works best for them.

Hands on therapy as treatment

Methods such as functional dry needling and manual therapy are used to release the over dominant muscles which commonly cause trigger points and a lot of the individual’s pain. This will not be considered as an option until the patient is strong enough for the method to be effective. Taping can assist in the short term. Tapes such as kinesiotape allow full motion but enhance the brain’s awareness of the joint in a more stable position. 

Education is crucial. Knowledge is power. Patients often start to get better once they have a diagnosis as this empowers them to start self-managing their condition.

Hypermobily Exercise Paediatrics

Exercise as treatment

Hypermobility Specific Exercise is used to create strength around the joints to better support them. It also enhances the individual's proprioception (body awareness). We tend to use high repetition, low resistance exercise in a closed chain way. The exercise programme will be created on an individual basis depending on the person’s level of ability and pain.

Attention to detail is a critical component and individuals should be closely monitored by a specialist physiotherapist, personal trainer or pilates trainer in the initial stages of their rehabilitation. When completing exercise mindful movement should be encouraged to prevent bad habits forming.

As well as physio-led strength based programmes at McGowan Physio we also advocate for Pilates exercise as a wonderful rehab tool for hypermobile bodies. It is best when completed 1:1 with a highly skilled pilates teacher using resistance based equipment such as the pilates reformer. The spring resistance allows a sense of  safe stability while creating a challenge to the muscular system.  Pilates equipment also allows for the desired “closed chain” approach. This means as much of the body in contact with something as possible  to ensure the nervous system is receiving as much information about where every part of the body is.

Medical management

It is important to find a healthcare practitioner who understands your condition. Medication may be required to reduce inflammation, reduce pain, manage anxiety and improve quality of sleep. A Rheumatologist or your own G.P. will be able to assist with this.