Trigger warning: chronic pain, suicidal ideation, self-harm.
Complex Regional Pain Syndrome (CRPS) is a neurological disorder characterised by extreme pain and an array of debilitating symptoms (sensory, motor, autonomic, skin & bone abnormalities) that can progress into a persistent condition causing disability. I have lived with CRPS in my main hand since a crush injury to the index finger of that hand in October 2011: more recently, symptoms have spread to my legs and feet, ‘thanks’ to neck and back whiplash injuries from two rear-impact RTAs (May 2022/July 2023).
I can honestly say that CRPS has ruined my life, reducing me to a much lesser version of the person that I used to be … and yet, the majority of people around me do not know that I have CRPS – or, more accurately, that CRPS ‘has’ me, imprisoned in it’s grip. Because I’ve largely managed to hide it. For nearly 14 years. Going about my daily life as if nothing is wrong. All of which is now changing, as I recently participated in the two-week residential rehabilitation programme at the specialist CRPS clinic at the Royal United Hospital in the city of Bath, transforming my understanding of this brutal condition, empowering me with knowledge and survival tools and – most importantly – the confidence to speak up, to share my truth, to no longer hide beneath the shadow of Complex Regional Pain Syndrome.
The exact cause of CRPS is unknown: it can happen to anyone (but is more common in women than men). CRPS can occur spontaneously with no evident trigger but more commonly develops after a physical trauma (injury or surgery) to a limb, and is known to involve the peripheral and central nervous systems along with the vascular (blood circulatory) and immune systems, causing changes in the way that the brain communicates with the affected limb: put simply, the nerves in that part of the body become more sensitive, altering sensations, function and movement.
There is no ‘cure’ for CRPS and the word ‘pain’ is overly simplistic, because the symptoms of CRPS are disproportionate to the physical trauma and can persist long after the physical effects appear to be healed. CRPS ‘pain’ goes beyond the limits of ‘normal’ pain and generally does not respond to standard pain medication. Subsequent trauma (physical and/or psychological) can cause existing symptoms to worsen and/or manifest in other parts of the body, and CRPS can cause physical deterioration and dysfunction, which in turn causes psychological and emotional distress, anxiety and depression. CRPS patients commonly feel detached from the affected limb, as if it is not their own, and can often feel stigmatised by health professionals who do not know about, are not interested, or simply do not ’believe in’ CRPS. Likewise, friends and family may struggle to understand: the injury is healed, and you look fine, so what is the problem?! Stop making such a fuss: drama queen!
It is no coincidence that CRPS is known as ‘The Suicide Disease’, and no great surprise that long-term sufferers commonly request amputation as a desperate solution to a desperate situation.
I have certainly considered both of these options … Not because I want to end my life, or ‘harm’ myself, but in fact the exact opposite …
My own body is a torture chamber, every day is a battle, and I exist in a state of constant exhaustion from which there is no means of escape. Thus, I occasionally imagine how it might be to walk gently into the moonlit sea on a cold and calm clear night, to feel the icy dark and salty ocean envelop my entire being … to feel nothing other than that wild and cold wet darkness, so that I might – even for a moment – be allowed to not feel the relentless pain of CRPS … But here’s the reality check: I know from personal experience that cold water amplifies my CRPS hand symptoms … meaning, this fantasy must – and indeed will – remain exactly that: a fantasy …
This, however, is is not where it ends …
… Because sometimes … just sometimes …
When I am going about my daily life, and when I look – to all the world – like I am fine, like I am functioning as a seemingly ‘normal’ person, and yet I am in reality suffering such excruciating pain, another idea kicks in …
My arm and hand hurt so much that the obvious solution is to remove the arm and/or hand, as the source of the pain …
Problem solved, yes?
Well, erm … actually, no. I am realistically aware that cutting my arm off would actually hurt. A lot. And I’d then bleed, perhaps to death. It would be messy. And painful. And I have friends who are amputees, and they still feel the pain of the body part that is no longer there. Thus I do know – in rational reality – that cutting my arm off is not the answer. But the point is, at those most desperate times, it feels like it makes sense: an escape route.
Does this shock you? It certainly should.
But there we have it. Welcome to my world. The world of CRPS.
SomewhereinwestCornwall 