Trigger Warning: 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. Recently I learned that my 2016 fibromyalgia and 2018 photosensitive migraine diagnoses (both triggered by topical chemotherapy treatment to my face) are both rooted in the underlying CRPS, which has also now spread to my legs and feet following neck and lower back injuries from two rear-impact road traffic accidents (May 2022/July 2023). This blog post is not intended for attention or sympathy, but to share information that may be helpful to others – whether living with CRPS themselves or supporting a family member, friend or colleague whose so-called ‘invisible’ disability may at times leave everyone perplexed and struggling to manage.
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 are seemingly healed. CRPS ‘pain’ goes beyond the limits of ‘normal’ pain and generally does not respond to 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, which then exacerbate the physical symptoms …
On and on it goes.
The exact cause of CRPS is unknown: CRPS can happen to anyone and may occur spontaneously with no evident trigger but more commonly develops after a physical trauma (injury or surgery) to a limb (arm, wrist or hand, leg, foot, ankle or hip) and is known to involve the peripheral and central nervous systems along with the vascular (blood circulatory) and immune systems, causing changes in how 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.
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!
For me the reality is that CRPS has ruined my life, reducing me to a much lesser version of the person who I used to be … and yet, the majority of people around me don’t even know that I have CRPS – or, more accurately, that CRPS ‘has’ me – imprisoned in it’s agonising grip – because I’ve largely managed to hide it. For nearly 14 years. Going about my daily life as if nothing is wrong, when in reality every aspect of my life has become ‘wrong’, extremely wrong. All of this is , however, now changing, since I’ve recently participated in the 2-week residential rehabilitation therapy course at Royal United Hospital Bath (RUHB), transforming my understanding of this brutal condition to empower myself with knowledge, survival tools, and the confidence to speak up, to share my truth and no longer hide beneath the shadow of CRPS.
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 – and will never be – any escape. Thus, I occasionally imagine how it might be to walk gently into the moonlit sea on cold and clear black velvet night, to feel the icy dark salty ocean envelop my entire being … to feel nothing other than that wild and wet cold darkness, so that I might – even for a moment – find relief through distraction from the relentless pain of CRPS … But here’s the reality check: I know from personal experience that cold water amplifies my CRPS symptoms … meaning, this fantasy must and indeed will remain just that: a fantasy …
… This, however, is not where it ends …
… Because sometimes … just sometimes …
When I am going about my daily life, when I appear – 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 … no. Because, obviously, if I did actually try to cut off my own arm it would hurt. A lot. And I’d then bleed, perhaps to death. It would be messy. And painful. But I’m unlikely to find a surgeon who would do it (professionally and tidily) for me. And I have friends who are amputees, and they still feel the pain of the body part that is no longer there. Thus I am aware – in rational reality – that cutting my arm off is not the answer. But the point is, at those most desperate times, it starts to make sense: as the only possible escape from this living hell.
Does this shock you? It certainly should.
But there we have it. Welcome to my world. The world of CRPS.
SomewhereinwestCornwall 