Over the last two years I’ve been experiencing increasing pain in my back and hips as well as in other joints, including my wrists, ankles and shoulders. Along with this almost constant pain I’ve also been having difficulties with nausea and, most recently, tiredness. Some of my tiredness is understandable given that my sleep is often disrupted, not only by my tics, but also by the pain and sickness. That said, some of my tiredness feels different from lack of sleep and seems to be located in my muscles.
The cause of these symptoms has been elusive, but a couple of weeks ago I got a new diagnosis that helps explain a lot. I’ve been diagnosed with Hypermobility Spectrum Disorder (HSD). This is a disorder of the connective tissue that holds our bodies together.
One of the most obvious symptoms is joint hypermobility, which means that the body’s joints move outside the normal range – I have always been exceptionally bendy!
As a child I was proud of how good I was at the game called Mercy – where someone twists your arm until you give in and shout ‘Mercy!’ My hands could be bent into horrible shapes, making my playmates wince long before I felt any pain. HSD affects the body in other ways too: my skin is soft and bruises easily and any scars I get have distinctive characteristics.
HSD means that my joints are also much more prone to injury, and when you add in the pressure that my body’s been under for a long time because of my tics, it’s not surprising that I’m in pain. One of the reasons I use a wheelchair is that tics in my very bendy ankles makes them particularly unstable. The specialist I saw thought that much of my body must be in a constant state of repetitive strain. It’s not just the joints that are affected – it can impact on other body systems too, such as digestion and the bladder.
Like Tourettes HSD is believed to run in families. In some people it’s benign and causes no troubling symptoms, while in others it can cause significant issues. Both my mum and Fat Sister have some of the characteristics of HSD although at the moment they don’t experience any difficulties from them. I know, too, that many people with Tourettes are hypermobile as well, and I understand that there may be some studies under way that back up this observation.
This new diagnosis won’t change much in terms of the immediate management of my symptoms – pain medication, physio, pacing myself and mindfulness will continue to be key. However, understanding what’s happening to me is a relief and means that I’m in a stronger position to learn about what’s causing my pain.
The report from the specialist arrived a few days ago. While it spelt out the impact of my body’s bendiness, the consultant also described a crucial feature of my life that’s unwavering – ‘Supportive sister’. It made me laugh to see Fat Sister rebranded in this way. And the consultant was spot on with this ‘diagnosis’. I’m incredibly lucky to have the solid support of Fat Sister, Leftwing Idiot and many other friends. I know that this puts me in a strong position as I continue to adapt and manage my changing requirements.