Isn't it funny the things you remember from childhood and realise when you look back. I was deeply impressed when anyone was in plaster. I longed to wear glasses. But the real magic were those people who were double jointed, they earned a special admiration from me because I knew that hairdressers could work magic, one day I might wear glasses (turned out quite quickly) and that an accident might put me in plaster some day (lets hope I didn’t wish too hard!). But my thumb would never bend the wrong way and my elbow would never do that funky thing of popping backwards.
Ah the ignorance of youth.
“Hypermobility describes joints that stretch further than normal … Approximately 5% of the healthy population have one or more hypermobile joints” ~ Wikipedia entry for 'Hypermobility'
Actually it turns out that Wikipedia are wrong in this. According to Isobel Knight, an internationally published author & lecturer on Ehlers-Danlos Syndrome - Hypermobility Type (& who will crop up several times in this article), it would seem approx 10-30% of males, and 20-40% of females in the healthy population may exhibit hypermobility. Way to go Wikipedia! Perhaps unsurprisingly "there is a particularly high prevalence of hypermobility amongst gymnasts, acrobats, musicians and dancers, with up to 70% particularly within the ballet and contemporary dance community ... (Deafer 2003; McCormack et al. 2004; Romper & Watkins 2012)" [A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type) by Isobel Knight, p16].
Whilst as a child it might have seemed rather cool to know someone who could bend their knee joints backwards, as an adult and as a massage therapist the reality of this ‘ability’ now seems distinctly uncomfortable. A few years ago, I had cause to start learning about Hypermobility Syndrome (or HMS), I attended a workshop about Joint Hypermobility Syndrome (JHS) at the annual Massage Training Institute conference in 2014, undertook plenty of research, and having read several useful articles I bought a book for my lending library which has become one of my most widely borrowed books: A Guide to Living With Hypermobility Syndrome: Bending without Breaking.
Research into HMS has come on in leaps and bounds. They now know that there are a group of hypermobility conditions that arise from genetic alteration in collagen and with different genes controlling and determining the development and function of the collagen. But there is no genetic test which can identify either Joint Hypermobility Syndrome (JHS) or Ehlers-Danlos Syndrome - Hypermobility Type (EDS-HM), nor separate them. They do not know why these conditions occur in some people at an early age, or why the condition may lie dormant for 30 or 40 years. Theories about it are constantly developing, symptoms are always being reviewed, and it’s only in the past 40 years that experts have decided there are actually 8 types of syndromes, including hypermobility type. These are excluding any other connective tissue disorders such as Marfan syndrome.
“…there is a spectrum from just being hypermobile with no symptoms to being hypermobile with joint symptoms with or without mild variations of other signs and symptoms (JHS), to being hypermobile with joint and other complex problems (EDS) [Ehlers-Danlos Syndrome]” ~ Help & Advice page from the Hypermobility Syndromes Association
One of the things all this learning has taught me, is that there is so little we know about the human body. For example, the naming conventions around this condition have recently changed. Ehlers-Danlos Syndrome - Hypermobility Type (EDS-HM) was formerly known as EDS-Type III, and along with Joint Hypermobility Syndrome (JHS) are the two terms most commonly used to describe hypermobility conditions. Whilst they have previously been deemed separate issues, and there is currently no genetic test that can identify nor separate them ...
“... experts now consider JHS and EDS-HM to be the same thing albeit derived from different clinical perspectives” ~ Dr Alan Hakim MA FRCP, Consultant Rheumatologist and Physician, Barts Health NHS Trust, London & Chief Medical Adviser and Trustee, HMSA
The image below is from the Hypermobility Syndromes Association’s website, on their Hypermobility & Illness page. Anyone wanting more information about hypermobility would be well advised to review this website. I can also highly recommend Isobel Knight’s book A Guide to Living With Hypermobility Syndrome: Bending without Breaking. Please note, this book is now out of print, and she has updated and improved another of her titles A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type) which I also have in the lending library.
Like much of my continuous professional development, my introduction to this complex world of hypermobile conditions was through a client. A lady in her mid-20s, she has had symptomatic Hypermobility Syndrome (or HMS) all her life, and has become an expert on her symptoms, and responsibly manages her condition, pain medication and exercise routine. As anyone with HMS knows, exercise is a huge part of a routine of self-care and symptom management, but she was referred to me for massage by her personal trainer.
She was finding that the work she was doing at the gym to keep her body working correctly was causing additional muscle stiffness, fatigue and shortening that occurs as a result of exercise. It was increasing her pain levels, so she was seeking massage to rectify. Working with this client, I have learnt a lot about HMS and am incredibly grateful for her encouragement, guidance and patience whilst I have been growing as a practitioner.
But it turns out I don’t just have one client with some form of hypermobility, I have several. Which got me thinking about the benefits that massage therapy can provide to people suffering with a hypermobility syndrome.
“As a person with EDS-HT [Ehlers-Danlos Syndrome (Hypermobility Type)] I often feel the need for my body to be soothed to release tension, aches and pains. For me massage is part of my package of strategies along with exercise and relaxation to help my hyperbole body cope with every day life” ~ Kay Locke, a massage therapist and (Dru) Yoga teacher quoted in A Guide to Living with Ehlers-Dalos Syndrome (Hypermobility Type)
Talking to my clients, there is no typical ‘one worst symptom’. For some it is the tiredness and lethargy whilst for others it is the volume of pain they experience. Whatever the client’s circumstances and reason for seeing it out, massage therapy can be adapted to help ease the concerns and symptoms. However, nearly all of my hypermobile clients seek massage not for relaxation (although of course they might well experience this beneficial side effect) but for relief. Relief from hypersensitivity in the skin, relief from pain, relief from tightness. But they also seek massage to enable them to become more aware of their own bodies, to differentiate between different sensations, different pains, to help retrain the nervous system so that their proprioceptive skills improve.
As a quick aside, proprioception is defined as “the sense of the relative position of neighbouring parts of the body and strength of effort being employed in movement”, according to the dictionary that is Wikipedia. According to one paper, “Proprioception is permanently impaired in patients that suffer from joint hypermobility or Ehlers-Danlos Syndrome” [Castori M (2012). "Ehlers-Danlos syndrome, hypermobility type: an underdiagnosed hereditary connective tissue disorder with mucocutaneous, articular, and systemic manifestations"] although both in my time working as a personal trainer, and as a massage therapist I have personally witnessed numerous instances where working with a person’s proprioception has seen an improvement, even with clients who suffer from hypermobility syndrome. However, these clients have to work harder and more consistently because they keep needing to retrain the brain / body connection.
So, fundamentally how might massage help clients who suffer with JHS or EDS?
- Relieve muscular tension and pain
- Relieve discomfort from skin hypersensitivity
- Improve proprioceptive awareness of the body
- Learn to distinguish between different types of pain and sensation
- Combat muscular tiredness and fatigue often associated with physical exertion
- Improve sensitivity around areas of particular tension or trauma such as scar sites, and help remove adhesions around such sites which can cause further pain and discomfort.
This list is not exhaustive, but has been drawn together from my knowledge, research and practice, and in conjunction with one of my clients, who has also read this article in draft. I learn from each and every one of my clients, but in this case, my particular thanks to her for her continued contribution to my development as a massage therapist and as a compassionate practitioner.
The Hypermobility Syndromes Association is a charity offering practical support and information regarding various hyper mobility syndromes including: Joint Hypermobility Syndrome, Ehlers-Danlos syndrome (all sub-types), Marfan syndrome, Sticklers and Osteogenesis Imperfecta. More information about this charity can be found on their website http://hypermobility.org
Isobel Knight [@IsobelKnight2] is the author of two books in my lending library:
- A Guide to Living With Hypermobility Syndrome: Bending without Breaking
- A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type)
She was interviewed in The Telegraph in 2012 about her Hypermobility “I feel brain-fogged. It’s a cruelly deceptive illness”, and was kind enough to review this article before it was published. My thanks also to my initial HMS massage client for her patience and understanding whilst I learnt about her condition and how best to help work with her.