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Hypermobility Syndrome

By Julie Barber
(
First published in STATNews, January 2012)


Last February my 13-year-old daughter was immobilised by chronic aches in her back and head and frequent tummy upsets. She was hardly attending school, had little strength, and couldn’t sleep at night. Despite some periods of seeming normality, her condition had been generally deteriorating during the previous 8 months. We had seen osteopaths, several GPs and a consultant paediatrician, and she had Alexander work when she was feeling stronger. Then I found a consultant who diagnosed Hypermobility Syndrome (HMS)*.

 

HMS is an inherited connective tissue condition in which the body’s collagen is more elastic than is the norm. ‘Collagen occurs throughout the body, including skin, gut, lungs and joints. It’s a major structural protein, forming molecular cables that strengthen the tendons, the skin and internal organs. It provides structure to our bodies, protecting and supporting the softer tissues and connecting them with the skeleton' (quoting Goodsell, 2000). ‘The joints are lax because the connective tissue is looser and more brittle than normal, particularly in ligaments, tendons, joints and muscles. This makes the joints more mobile, sometimes unstable, thus more prone to injury’ (Grahame, Hasson 2006). People may find it hard to stand, walk and perform even simple everyday tasks such as holding a saucepan or book. Physical strength and endurance are quickly lost -definitely a case of ‘if you don’t use it you lose it’. Some cases are mild, some severe.

 

After the diagnosis I read everything I could about HMS, and recognised that a lot of my pupils appeared to have it, though very few had been diagnosed as such. Talking with colleagues I realised how few had come across or heard of this syndrome. The same can be said of our GPs and the hospital consultants we saw prior to diagnosis. HMS is a relatively new diagnosis: this article aims to bring it to the attention of the Alexander community, particularly as recent publications on HMS recommend the Technique for helping on the road to recovery.

 

We have all seen pupils who are clearly ‘double-jointed’ with lax ligaments, and many teachers may be overly flexible themselves. 40% of Brazilians and Chileans are hypermobile compared to 10-20% of the UK population. It’s common in the performing arts and sports as being flexible often gives a natural advantage to dancers, actors, musicians and athletes. According to our consultant, the top four tennis players in the world are all hypermobile, as are David Beckham and Andrew Phelps. It’s suggested that Paganini was. The difference between simple hypermobility and HMS is the degree of chronic pain suffered. If your muscles are strong, hypermobility presents advantages (although it still makes you prone to injury). If not, chronic pain (of various degrees) and disability can become a fact of life.

 

Anyone with hypermobile joints is at risk of developing HMS. Those with the condition may look well and healthy, but have chronic aches and pains that come and go. By the time they come to us they may be frustrated, even depressed or angry, having gone from one expert to the next with little improvement. Posturally they will have some hyperextended joints (such as swayback knees, flat feet/fallen arches, hypermobile fingers, elbows, hips or shoulders, etc). Usually not all joints are affected -just one overly flexible joint accompanied by chronic pain may be enough for a diagnosis. [Rheumatologists use the Beighton/Brighton Criteria]. These joints have a much wider range of movement (ROM) than usual and may dislocate easily or sublux (a partial dislocation where the limb gets stuck at one end of the wider movement). Other symptoms may be present such as asthma, chronic fatigue, poor sleep, dizziness and mental clouding, migraines, increased levels of anxiety, lower pain thresholds, ‘velvet’ skin that bruises and scars easily, ‘growing pains’ in children, uterine or rectal prolapses, hernias, scoliosis, early onset arthritis, overuse injuries (worsened by the lack of muscular endurance and because muscles are working harder to control the ROM), irritable bowel syndrome, reduced proprioception and poor co-ordination. No wonder sufferers are often at their wits’ end!

 

HMS alters proprioception so those affected can be quite unaware of how "floppy" they are. They can appear simultaneously tense but without tone, and can be quite a challenge to teach. Immediately after my daughter was diagnosed I recognised HMS in an 18-year-old pupil who was clearly very tight and suffering from RSI; she found it baffling (and a bit offensive) to be asked to 'let go' as she felt perfectly relaxed. She was diagnosed with HMS subsequently. The reason for the lack of sensory awareness is not completely clear: ‘HMS is not a disorder of the neurological system. Proprioception might be poor because the tissues are lax. The sensory input isn’t coming in, [you] are not getting the feedback from the joints or the tissues to the nervous system’ (Dr Jane Simmonds in correspondence with Isobel Knight, August 2010). In her book (listed below) Isobel Knight says that, in her opinion, ‘… people are in a lot of pain partly because they are hanging onto certain parts of their body because they can’t feel they are doing it.’

 

HMS can heighten the experience of pain -‘there’s a fault in the way their pain signals are picked up for onward transmission to the brain, where they reach consciousness’ (Professor Grahame). General painkillers (paracetamol, aspirin) often have little effect on the chronic pain of HMS sufferers. (In fact, a resistance to the effects of dental anaesthetics is another indicator of the condition.)

Age and hormones affect hypermobility. Testosterone stiffens joints so in boys the hypermobility often eases off as puberty kicks in. In girls the opposite may happen, with the condition worsening with the onset of female hormones. More women are affected than men. With age the body gradually gets stiffer, so hypermobile joints generally become less of a problem. However the other elements of HMS may continue into later life, and can greatly benefit from Alexander work. Most pupils I see are in this group.

 

In fit and physically active young people hypermobility may present no problems, and even be a considerable asset. However, when HMS is clearly interfering with someone's ability to lead a normal, pain-free life (especially in a young person) it is crucial that they are seen by a specialist with knowledge of the condition (not all do), as soon as possible to reduce further injury to the joints which leads to chronic, debilitating pain. Medical treatment is more ‘whole person’ than is the norm: the hospital team may include occupational therapy (for help with sleep, pacing and aids), psychotherapy (for anxiety and pain management) and, importantly, specialist physiotherapy to create an individualised programme to strengthen muscles to take the place of the overly lax ligaments (enabling the ROM to become more normal). The aim is to become physically fit and active, so that the person can lead a normal life. ‘Hypermobilty syndrome is what happens when we lead a too sedentary life and become weak, and a useful genetic difference such as being supple becomes a problem. Weakness and giving in to pain is the issue’, said our consultant, Dr Nathan Hasson. In the specialist units that treat the disease, many of the doctors and physiotherapists have HMS themselves.

 

However, if the condition is not diagnosed correctly in a young person they are likely to do less and less in response to the pain and discomfort. A downward spiral is initiated: symptoms worsen, stamina further decreases and chronic pain and fatigue develop, as in my daughter’s case, due to deconditioning of muscles and generalised weakness.

 

In Alexander lessons I often talk about my daughter’s symptoms and diagnosis with pupils and it is amazing the number of people who recognise aspects of their younger selves in the description. Usually my pupils are older so are both stronger and less flexible, and have found ways to compensate for their earlier shortcomings. However, so far all wish that they had been correctly diagnosed when younger so they could have lived fuller, more active lives.

 

I think the Alexander Technique is of immense help when the pupil has sufficient physical strength to take the directions and go 'up'. It is excellent for restoring more reliable proprioception, helping people reconnect with their bodies and learn the difference between tense and free muscles, thereby preventing misuse and overuse. Many of these people have been off balance for most of their lives without anyone understanding why. Standing still or being immobile for relatively short periods is often difficult and uncomfortable. They need stability and balance. Learning how to support themselves, to stand and move with better balance and less effort is invaluable. Patient perseverance and gentle hands-on work helps put people back together and gives them the tools and confidence to become fit and active, to take regular exercise and live life to the full.

 

However my experience so far leaves me thinking that, in the worst cases, undiagnosed HMS can render a person too weak to truly benefit from the Technique. They may feel the benefit briefly -or not at all -but until they have strong muscles to do the job of the ligaments they will continue to have weak joints. In such cases I’ll talk about HMS with them and may suggest they ask their GP for a referral to a specialist HMS clinic (University College Hospital London, Royal National Hospital for Rheumatic Diseases Bath, Glasgow Royal Infirmary, and Royal National Orthopaedic Hospital in Stanmore).

 

I’d like to point out that my daughter didn’t appear overly flexible at all (unlike many of her friends who are naturally great at gymnastics and dancing and used to have party tricks of clicking their finger joints and bending limbs at odd angles). However, the rheumatologist’s examination showed up hypermobility in her spine, shoulders, fingers, hips, knees and ankles. She was asked if handwriting was difficult -it is, she uses all her fingers to grip the pen. Acupuncture has been invaluable for helping her out of chronic fatigue by restoring her energy, and a programme of daily physiotherapy exercises has helped build up her strength. She is now back at school and leading a more normal life.

 

To sum up, HMS has always been around but in the 21st century it’s increasingly a major problem as children, young people and adults spend more time in sedentary pursuits, use their bodies less and subsequently lose physical tone. It is inherited and affects all the body’s soft tissues, in some people more than in others, even within the same family. It’s important that sufferers get a correct diagnosis and intervention so that they can become strong and fit enough to lead a full life. The Alexander Technique can be of tremendous help with this, by building up more reliable proprioception and improved functioning, alongside a programme of regular exercise to improve muscular tone. I would like to hear from teachers and trainees who have experience of this condition, either with pupils or personally (email: barberjulies (at) gmail.com).

 

Alexander Technique teacher Glenna Batson suggests the importance of first directing such persons inward --towards the midline -to ensure stability. Stability always precedes mobility in coordinated action.

 

‘Alexander Technique teachers use their good use and their hands-on to imply directions, usually F.M. Alexander’s primary directions, to redirect people away from states which cause the body to narrow, shrink, and collapse. For persons with HMS, however, it is important to ensure stability before directing the person outwards into mobility.

 

‘Physiotherapists use many hands-on techniques of facilitation and inhibition, techniques that are based on neurophysiological principles of evoking localized reflex stability and mobility prior to full body action. One of these techniques is "approximation" -a way of gently bringing joint surfaces closer together (the opposite of traction). Joint surface approximation happens naturally under usual circumstances of weight bearing, and evokes automatic neuromuscular reflex patterns that stabilise joints prior to movement (the body moving into and though space). In HMS, this automatic neuromuscular reflex patterning does not occur in a timely manner, leaving the person with little support for movement. If these persons are given primary directions too soon, they may not find ease of coordination, but rather experience more pain and sense of weakness. While AT teachers do not "manipulate" in their hands-on work as such, they do give directions with their use, their hands, and their verbal cues. Keeping in mind that the first direction is inward, will help the AT teacher better understand the needs of the client with HMS.’

 

For further reading I recommend A Guide to Living with Hypermobility Syndrome, Bending without Breaking by Isobel Knight (2011). The Hypermobility Syndrome Association (HMSA) has a website www.hypermobility.org

* It’s also known as Ehlers-Danlos syndrome (EDS) type III, hypermobility. Other types of EDS such as Marfan’s syndrome and EDS vascular and classical types are more serious.

 

 © Juie Barber 2012

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