Bendy books: a review of books about hypermobility syndrome
When I received my diagnosis of hypermobility syndrome in 2008 I began reading up on the subject. Back then, the only book available was written for physiotherapists, but I devoured it and experienced many moments of revelation. Since then, three more books have come on the scene – another aimed at healthcare professionals, and two which are a little easier to read. Here I review them all. There’s also a fifth book which is purely for experts. Bear in mind that I am reading from the perspective of a patient – my last experience with science was at A level!
Before I begin, it’s worth noting what the hypermobility syndrome actually is. Some people are hypermobile, i.e. their joints move further than they should, and for many of them it’s not a difficulty. When this hypermobility leads to a problem such as pain, it’s known as the Hypermobility Syndrome (HMS). This hypermobility is generally caused by collagen disorders such as Ehlers-Danlos Syndrome (EDS) and Marfan Syndrome. EDS type 3 is considered by many professionals to be synonymous with HMS – so you can see the overlap – and potential for confusion! These books are for everyone with Hypermobility Syndrome, no matter what the cause.
Bendy books aimed at professionals
Hypermobility Syndrome: Diagnosis and Management for Physiotherapists (Keer, Grahame) (2003)
This book was a great starter for me: it begins (as do all the books) with an introduction to HMS and the Beighton test for hypermobility. It is clear and easy to understand. Although this book is aimed at physiotherapists (and patients might want to skip over recommended exercises) it is easy to read and leads you through how each area of the body is affected. Sections about HMS in children, adolescents and then adults allow you to reflect on your life – it was full of eureka moments for me as I came to realise that my slow walking as a baby, my bad handwriting in school, and my frequently turning ankles, were all part of the same condition that caused my knee to dislocate.
It is well illustrated – full of pictures that I thought were normal; this led to adventures where I asked my husband to move his joints and realised how we differed! It was the book from which I learned that what was “normal for me” was not at all “normal”. The penny dropped several times as I read on. While that could have happened with whichever book I discovered first, I feel that this one is well set out and although aimed at physiotherapists it is easy to read, and calmly factual. My only issue is that this book addresses only the movement of joints; it doesn’t consider the other issues such as gut and bladder problems which may occur, and for that reason it’s best accompanied by one of the two books aimed at patients. It was, however, very useful to lend to my Pilates tutor so she could understand me and tailor exercises to my needs.
Most importantly, while this book taught me how I was different from normal, it didn’t make me feel that this was a problem.
Hypermobility, Fibromyalgia and Chronic Pain (Hakim, Keer, Grahame) (Sep 2010)
I bought this book because it had my consultant’s name on the cover; I thought it would answer everything about my condition. In some ways I was right; it’s incredibly thorough. However I realised it was a textbook when some sections seemed to have more pages of references than they do of content! It’s a great reference book and the chapter on the physiology of pain is well worth reading, if you can keep up with the terminology. This falls within the first section, on clinical science. The second section on therapy is much more accessible to the lay reader and covers everything from drugs to exercises and from CBT to sleep hygiene.
I’d recommend this book for the more determined expert patient, someone with a thirst for knowledge on their condition, perhaps looking for passages they can quote to their own doctors if necessary. However, I found it hard going in places and certainly not bedtime reading.
Hypermobility of Joints 4th ed (Beighton, Grahame, Bird) (Sep 2011)
It’s worth a quick mention of this forthcoming book, which will be the fourth edition of an existing tome. This publication is clearly aimed at experts, with topics such as “molecular basis of hypermobility” which suggests it is unlikely to be useful to patients unless they are also medical specialists! The high price also betrays that it is a specialist textbook – £90, with earlier editions costing well over £100. For that reason I haven’t bought it, and unless you are a healthcare professional (in which case, it’s worth noting that the authors are highly respected in their field) it’s probably not a useful addition to your bookshelf.
Bendy books aimed at patients
Issues and Management of Joint Hypermobility: A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome (Tinkle) (Sep 2008)
Tinkle’s book differs from the others in that it’s written by an American. When I mentioned it to my consultant he dismissively told me that it had quoted some of his colleagues without their permission, and discouraged me from it. However, I’d already bought the book so of course I would read it!
It is very straightforward, first explaining the types of HMS and EDS and then covering how each part of the body is affected. This means that it does not go into much depth in any section, but there is a broad cover of all systems in the body so it gives a good overview of how people with HMS may be affected.
I found this a very good book to highlight the areas where I was affected and lent it to my mother, so she would get a better understanding of my condition. It would be an ideal starting point for someone with HMS, or a good overview for the parent of a child with HMS, but for detail you will need to tackle one of the books aimed at professionals.
N.B. This book has now been superseded by Joint Hypermobility Handbook.
A Guide to Living with Hypermobility Syndrome: Bending without Breaking (Knight) (July 2011)
The narrative is a combination of Knight’s own experiences, and attributed explanations. This means the reader has to check whether a statement is a fact established by research, or Knight’s own opinion – for example, I’m still not clear on the origin of Knight’s belief that “people with HMS are more likely to experience fatigue … because there is at least twice the amount of effort required constantly just ‘to be’”. Each section is frequently illustrated by quotes from hypermobile people – most of which sound as if they came from messageboards, but are well sourced and relevant to the text.
This book openly tackles some of the issues of living with HMS which others don’t address (or only in a clinical manner) such as anxiety and intimate relationships. I was so pleased to see a book discuss how people with HMS fare in the bedroom – but disappointed that the section was coloured by Knight’s description of a failed relationship. The final sentence begins “I saw no point in continuing to live…” when I was hoping for encouragement!
Because of the mixture of Knight’s experience and that of others, this would make a reasonable first book for people who have just been diagnosed with HMS or a related condition. I think that in particular, teens and young adults would benefit from reading other people’s experiences and realising “it’s not just me”. The difficulty I personally have with this book is that many of the experiences differ from mine so they are not necessarily familiar, or helpful. Also, as I’ve been aware of my condition for three years now, I didn’t learn anything new.
If you are newly diagnosed then both Tinkle and Knight’s books complement each other and make a good starting point. Tinkle comes across as more factual while Knight shares experience. If you are a teen or young adult, and you want to feel you are not alone – try A Guide to Living with Hypermobility Syndrome. If you are moving past that point of initial diagnosis and would like to learn a little more about how every part of you could be affected – or you’re the parent of a child with HMS, looking for an overview of the condition – read Issues and Management of Joint Hypermobility; that’s the volume I would recommend if you can only buy one. However, neither book will break the bank if you want to give them a try.
If you are already familiar with your diagnosis and your body, and need more in depth information, then pick up Hypermobility, Fibromyalgia and Chronic Pain; it’s useful and very thorough, but more of a textbook and not easy to sit down and read cover to cover. If you consider yourself the “expert patient” then this could be what you need in order to quote to your medical professionals as you find your way through life!