Hyper Mobility and Hyper Mobility Syndrome – What are they and what’s the difference between them?

The phrase “hyper mobile” when referring to joints in the human body is coming into common use, with many people reporting that they or their children have been classed as hyper mobile by their doctor, but few people understand what that actually means, including the doctors themselves. This lack of understanding is sadly endemic throughout mainstream medicine, purely because the implications of being hyper mobile are extremely wide reaching and varied. Additionally there is confusion among both medics and patients as to what classes as hyper mobility, and what warrants a diagnosis of Hyper Mobility Syndrome, as the two are not the same.

What is Hyper Mobility?

A hyper mobile joint is a joint that moves beyond the normal range of movement seen in the typical human body. A person can have just one hyper mobile joint (commonly termed as “double jointed”), or several. A few people present with hyper mobility in every joint in their body. While such people may be able to move and bend in sometimes very unnatural looking ways, these people suffer no adverse effects for this ability; they do not experience injury or pain in their hyper mobile joints or the areas around the joint, and many use their extreme flexibility to their advantage – dancers, gymnasts and contortionists are prime examples of hyper mobile bodies being used to their full extent.

The most commonly reported hyper mobile joints are the hips, knees, shoulders, elbows and the spine, but many people also have individual fingers or toes that can move in unexpected directions without trauma.

The vast majority of us can be classed as hyper mobile during early to middle childhood. Extreme examples will be noticed, but most will not, and most will lose the ability to over extend their joints over time, as puberty and then the aging process naturally stiffens and strengthens the body.

Hyper Mobility is extremely common and, in most cases, is not cause for concern.

Hyper Mobility Syndrome is something quite different.

What is Hyper Mobility Syndrome?

Hyper Mobility Syndrome (HMS, also known as Joint Hyper Mobility Syndrome (JHMS) Ehlers Danlos type 3 (EDS3), Hypermobility type Ehlers Danlos) is caused by a genetic fault in the makeup of the body’s collagen, resulting in the soft tissue within the body being too elastic. HMS patients are born with the condition but most do not become clearly symptomatic until their teens, although, after diagnosis and gaining an understanding of the condition, many will report a number of childhood complaints that are now understood to be warning signs of the condition. HMS presents predominantly in females, and there is no treatment or cure, although it can be “managed” with varying degrees of success depending on the patient. 

What are the symptoms of Hyper Mobility Syndrome?

In broad terms, HMS can be characterised as hyper mobility that has become problematic. While most hyper mobile children will naturally grow out of their ability to over extend their joints, some will not. Retaining hypermobility into adulthood is not unusual, and not necessarily a cause for concern, but when combined with persistent or repeated soft tissue injury, slow healing, and reports of moderate to severe “growing pains” in the long bones of the arms and/or legs, the syndrome should be considered at the earliest opportunity, as a programme of carefully tailored strengthening exercises while the patient is still fit is the best prevention of possible disability in later life.

Commonly reported symptoms or traits of the condition include:
  • Hyper mobility / over extension of 5 or more joints in the body (see Beighton Score)
  • Repeated or chronic soft tissue injury anywhere in the body
  • Sounds of joints “clicking” or “cracking” when standing up from sitting, or in the first few steps of walking after standing still for a length of time
  • Clicking or locking of either or both jaw joints
  • Persistent or chronic pain (not necessarily at a constant intensity) anywhere in the limbs and/or the back, neck, hips or shoulders
  • Frequent, moderate to severe “growing pains”  (often likened to the pain of tooth ache, or the aches associated with flu) in the long bones of the arms and/or legs during childhood and/or continuing into adulthood
  • Easy full or partial dislocations of joints, ie, with little force needed to cause the joint to dislocate, eg, turning over in bed, lifting or carrying something heavy or awkward.
  • Slow healing of both soft tissue and skin injuries
  • Localised mystery bruising, often on or around joints

In addition to these musculo-skeletal symptoms, there are other signs to look out for that may initially seem unrelated, but are in fact all part of the same condition, as the connective tissue (collagen) fault is present in ALL soft tissues in the body which includes the digestive system, the circulatory system, the skin and the fingernails.
  • Digestive issues such as chronic indigestion, IBS or hiatus hernia
  • Pale or translucent skin
  • Weak fingernails prone to splitting or flaking
  • Longer than anticipated recovery periods after illness or surgery
  • Temporary dizziness when standing up from a sitting position
  • Extreme Fatigue, needing 10+ hours of sleep a night, not feeling rested after a good night’s sleep
  • “Brain Fog”
  • Low immune system, propensity to catch “everything that’s going”
  • Youthful appearance in older patients
  • Very bright, sparkly eyes, with the whites of the eyes appearing to have a blue tinge to them
  • Ineffectiveness of local anaesthetics

HMS is often initially misdiagnosed as Chronic Fatigue Syndrome (CFS), as it is the extreme fatigue or the feeling of not having rested even after many hours sleep that first takes a patient to see their GP. This fatigue is in actual fact being caused by the body having to work twice as hard as a typical body, just to achieve normal day to day activities, as the supportive soft tissue (tendons and ligaments) of the skeleton is not strong enough to do the job it is meant to do. This weakness engages an autonomic response within the body triggering other soft tissue (muscles) to “pick up the slack”. The patient is generally totally unaware of this, and therefore cannot account for the feeling of physical exhaustion, which, when prolonged, leads to mental exhaustion and a feeling of “brain fog”, and a sluggish immune system. Skeletal issues like hyper extending joints often seem unremarkable to the patient and they will therefore not think to mention them to a doctor, as they have experienced them all their lives and are unaware that they are not “normal”.

Perversely, despite its name, HMS can ultimately cause extreme stiffness in areas of the body where injury has become chronic, as a result of the muscles trying to do more than they were built to do. The extent of this stiffness can vary on a daily, and even an hourly basis, causing pain levels and mobility to fluctuate seemingly at random. In extreme cases, the seizing up of the soft tissue can cause interruptions in nerve signals and impede circulation. 

How is Hyper Mobility Syndrome Managed?

As with all medical issues, the earlier the diagnosis, the better the future for the patient. In the case of HMS, the ideal scenario is that in which the condition is recognised in childhood, before the wear and tear of life, and the hormonal flood of puberty can inflict too much damage. In these cases, a combination of sensible monitoring, minor restrictions on school sports activities (contact sports such as football, rugby or hockey are not advisable) and a carefully planned exercise programme, sustained and altered appropriately throughout the patient’s life, that is designed to build strength and core stability, can be extremely successful in avoiding the injuries that lead to the longer term problems. It is important to remember though that this regime is a lifelong one and must be maintained as a way of life rather than being considered as a one off remedy.

Where diagnosis comes after an injury has become persistent and/or pain has become chronic, effective management becomes much more difficult, as one or more areas of the body may have become too damaged to tolerate any attempts at strengthening exercises. Additionally, the nature of the condition means that injuries or weaknesses are able to spread themselves very easily as, once one spot has become permanently damaged, the area around it starts to work harder to compensate for the weakness, which then itself becomes damaged through over use.

Despite this, the primary course of action within mainstream medicine is to refer the patient into physiotherapy, in parallel with prescribing pain medication and/or considering a referral into a pain clinic. Unfortunately, a very large number of HMS patients who are sent for physiotherapy after injuries have become chronic report that this form of treatment, which is largely based on pilates exercises, does not help them, and in many cases makes them worse. The reasons for this are mixed; a lack of education about the condition within main stream medicine means that many physiotherapists do not fully understand the importance of an holistic (treating the whole body as opposed to just the specified injury) approach in HMS patients, pressure within the current medical system prevents patients from getting the level of one to one attention needed to properly learn appropriate exercises to ensure they are carried out correctly at home, and for some patients, the affected soft tissue can be so badly damaged by the time they are seen that exercising under their own power is no longer appropriate or even possible.

For these patients, Osteopathy and Massage Therapies often prove to be a successful form of management, as they respond far better to “outside forces” working on their soft tissue rather than trying to exercise them themselves. Stubborn partial dislocations are often more effectively dealt with through osteopathy, as an osteopath is able to recognise the fault in the joint by observation of movement (or lack of) and by feeling for the displacement. Mainstream medicine looks for such things via medical imaging, but partial dislocations are often not visible on x-rays due to the subtly of the shift, and the angles the images are taken from. Simple and gentle forms of exercise such as walking or swimming can also prove to be beneficial to these patients, as, while over exerting the severely affected HMS body is to be avoided, keeping it gently mobile is as important as getting appropriate amounts of rest. Successful management of HMS involves tailor made plans for each individual, and often years of unsuccessful experimentation before the right levels and combinations of exercise, rest, therapy and pain relief are found.

Why have so few people heard of Hyper Mobility Syndrome?

One of the greatest problems facing an HMS patient is the lack of knowledge of the condition in their general community, and lack of understanding of the condition within mainstream medicine; the condition has an extremely varied range of presentations, making it difficult to recognise in the first instance, and then difficult to manage effectively after diagnosis as it is not possible to apply a standardised treatment or management plan to each patient. 

The condition is currently regarded as “newly recognised”, having only gained a name in the late 1980s. It is not classed as a progressive condition and it is not life limiting. Research into the causes and effects of the condition is underway but still in comparatively early stages, and, as with all other newly recognised conditions, it is not generally known about outside the medical disciplines that specialise in it, or the patient community. Consequently, not only do family, friends and employers of those diagnosed struggle to understand the complexity of the condition and the sometimes rapid change in the severity and/or location of symptoms, a great many patients are missing out on diagnosis because their doctors are not aware of the condition.

Low diagnosis levels result in a condition being classed as rare, and currently HMS falls under that heading. However, rapidly growing online communities would indicate that HMS is not rare, but chronically underdiagnosed, which sadly means many patients do not get the help and the crucial knowledge of the condition they need to help them avoid becoming severely affected by it, until after they have become partially or even seriously disabled. 

No matter when diagnosis takes place, a level of lifestyle adjustment will be advantageous to every HMS patient, from working time into their normal schedule for appropriate exercise or therapy appointments, to cutting back on working hours or even changing careers, but the lack of knowledge and understanding in the wider community can make these adjustments very difficult. Educating people, and crucially the entirety of the medical community is key to improving the future outlook for thousands of diagnosed and yet to be diagnosed HMS patients.