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Complex Regional Pain Syndrome (CRPS) - A Journey

Updated: May 13, 2021

Start the road to coping with CRPS

Like most people with CRPS, I hadn’t heard of it until I contracted it. Well, nearly four years after I contracted it, to be precise. Because at that time it was so uncommon that most doctors and consultants either hadn’t heard of it or didn’t consider it, I was given numerous misdiagnosis to explain my physical symptoms – including a bad sprain, torn ligaments, a trapped nerve, nerve damage, the onset of arthritis and my own personal favourite… Nothing, because it was all in my head and I should actually be referred to a psychiatrist.

Chronic or Complex Regional Pain Syndrome (CRPS, as it’s commonly known) is a condition that not a huge amount is known about, hence the frequent misdiagnosis. It is a neuro-inflammatory disorder in which the nerves around a particular area misfire and constantly send pain signals to the brain. This is usually relating to a previous injury or physical trauma which often no longer exists, or continues after the injury has healed. Sufferers experience an extraordinary amount of pain which is disproportionate to any ailment or injury they may have experienced – and this is constant – as well as inflamed limbs or areas, loss of muscle function or stiffness in certain areas, hypersensitivity or allodynia (allodynia, in my case, feels like a cattle prod in certain areas of my body when they are triggered, even by the lightest of touches or sometimes even a breeze), a difference in colour or temperature in certain areas (for example, having one cold leg and one hot, or having one arm that is more red or purple in colour than the other), abnormal swelling, … and these are just a few of the many symptoms that may be experienced, as every CRPS sufferer shows varying signs.

CRPS can also be ‘contracted’ in numerous ways. Personally, I was simply helping a friend move house in 2008 when I moved her child’s bed headboard made of light pine. However, as I lifted it, I also twisted my body, causing a massive jolt of pain to shoot down the entirety of my left side. My knee collapsed and I could no longer put weight on it. Upon visiting my GP, I was told that I had sprained it and I should strap my knee up, elevate it for a few days and take lots of paracetamol or ibuprofen. I did as I was told, however, a few days later I realised that my kneecap had ‘locked’ into place so I could no longer bend it even manually, and my leg was now so painful that I could not put any weight on it at all, let alone use it. My GP was perplexed and sent me for the first of many, many X-Rays and MRIs. And so, my journey of tests, physio, hydrotherapy, mirror box therapy, consultants’ appointments and the like began.

Over the next year or so, the pain spread quickly throughout the entire left side of my body, from the shoulder blade to the tips of my toes. I ended up in a wheelchair as I became unable to walk at all on a bad day and I heavily relied on crutches on a really good day; I was unable to sleep on my back, my front or my side as the pain was so intense; I was prescribed so many painkillers and medications, such as Tramadol, Gabapentin, Pregabalin, and morphine at various junctures, that I became a zombie, unable to think straight or speak sometimes – at the peak I was taking 31 tablets altogether per day; I was unable to do the simplest things like make a cup of coffee, dress myself, get in the shower or even go to the toilet unaided some days (meaning my then-husband became my carer). But worst of all, with no diagnoses, I was in limbo. And that’s the hardest thing, the not-knowing. It can have an extremely detrimental effect, both mentally and physically. The wondering if it is all in your head and maybe you are going mad, amongst the self-loathing, the feeling of helplessness and the self-blame. This was all a bit of a comedown for an extremely independent person who had been working in central London as a magazine Editor in a popular publishing house.

Over time, my physical problems worsened until I lost virtually all strength in my left leg; indeed, it became so weakened that it used to drag behind me if I was able to walk with my crutches. It was around this time I was referred for hydrotherapy and intense physiotherapy, which did help enormously. At this point I still had not been diagnosed and was told that, because they did not know the cause of the symptoms, they did not know if I would ever be able to walk again. I will never forget that conversation with Mr. B***, my consultant – a cold, uncompassionate man – as it n