It’s been a while since I fired up my blog but there’s been a reason for the radio silence.
Many of you already know I’ve had ongoing issues with my arm, shoulder and neck for over a year and after many visits to various GPs, physios and hospital departments I most recently met with a specialist physiotherapist (thank you Sarah for the recommendation) and finally have a diagnosis – Hypermobility Spectrum Disorder (formerly known as Hypermobility Syndrome). I’ll be addressing this condition more over future blogs but here’s a little introduction for those of you who’ve not heard of it.
What is it?
Hypermobility Spectrum Disorder (HSD) affects the body’s connective tissue. Connective tissue lies between our tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In HSD, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of HSD but usually a form of collagen – to be fragile and stretchy.
As these connective tissues are present throughout the body, people with HSD tend to experience a broad range of symptoms, most of them less visible than greater than average joint range. It's a complex syndrome so can affect many systems of the body at once but in spite of this HSD is often an invisible ‘illness’.
Symptoms commonly include, long-term pain, chronic fatigue, repetitive injuries, dizziness and digestive disorders but there are many more. Such problems and their severity also vary from person to person.
As I mentioned, there can be many symptoms but I’ve listed the ones that I tend to suffer from to give you more of an idea:
joint hypermobility (this increased range of movement in the joints can be in just a few or in many)
loose, unstable joints that can sublax (partially dislocate) easily
feeling of stiffness in the joints (at odds with range of movement)
chronic (persistent) joint pain and clicking joints (pain can be acute or chronic and can be brought on with minimal provocation)
extreme tiredness (fatigue) and flu like symptoms, waking up feeling unrefreshed
repetitive movement injuries and bursitis
skin that bruises easily
poor healing and slow recovery
sensations of paraesthesia (tingling, burning, numbness)
dizziness and low blood pressure
cold hands and feet (Reynaud’s)
skin that splits easily (and yet soft and velvety to touch)
Currently, there are no simple tests to confirm whether someone has HSD. The diagnosis is made based on a person's medical history and a physical examination and as such it requires a medical professional to look at the person holistically.
Mine was missed owing to the fact that some of my muscles had tightened up in order to protect misaligned joints, masking the true range of movement I had. When I heard that I felt I ought to write a letter of apology and thanks to my poor muscles for carrying the can for so long!
HSD patients dislike static postures as their connective tissues lack the strength to maintain it. So, if you’ve seen me slouching and fidgeting, now you know why – it takes a heck of a lot of effort for me to maintain ‘good posture’.
Individuals tend to look and move well, even if they are in pain which can lead to dismissal as being a hypochondriac (I’ve definitely been called that a few times in my life).
It’s important to understand that around 10% of the population are what’s considered ‘hypermobile’ but for many this may not be a problem. In fact, to some, it could be a benefit (you’ll often see athletes, dancers and musicians with hypermobility). The trouble occurs when the individual moves into a syndrome state, i.e. they become symptomatic.
Thankfully, my HSD is fairly mild and located within the upper half of my body and I am now working with a physiotherapist to address the symptoms. As well as bringing my joints back into realignment we’ll be working together to build strength and stabilisation to them (within their normal range of movement, or rather, what’s normal for me!).
As is the way, once you get diagnosed with something, you suddenly discover lots of other people with the same condition (albeit in varying degrees). As I go on this journey, I hope to share some of the knowledge I find in the hope I can educate and assist others living with or loving someone with HSD.