Complex Regional Pain Syndrome (CRPS) - A Journey

Updated: May 13


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 nearly broke me. I sunk into an even deeper depression for months and regularly entertained thoughts of suicide. It came as little surprise when I later learned that CRPS is known as the ‘Suicide Disease’, such is its detrimental effect. Because my pain was centred around my left leg, predominantly my knee, I used to dream of having the leg amputated, just to stop the pain. And yes, I know how dramatic and ridiculous that may sound now, but when you have had no break from a chronic pain for literally years rationality and logic goes out the window!


Eventually, with support and anti-depressants, I began to regain my spark and my fight. I was 30 years old, newly married and had just bought my first house when CRPS hit and, a few years on, I felt my life passing me by. Although on most days I felt about 80 years old, I slowly realised that only I had the power to take back control of my life. My consultant’s words had been playing on a loop in my head since I’d heard them, but instead of using them negatively as I had been I started to get angry. Who was he to say I would never walk again? He couldn’t even tell what was wrong with me! I became determined to prove him wrong and, for the next year or so, I worked hard on both my physical and mental wellbeing. I did three 45-minute physio sessions on my own at home every day, using the simple exercises I had been provided, I ensured I relaxed and rested and most importantly of all, I now realise, I discovered hypnotherapy. My mum had given me a hypnotherapy relaxation audio and I began to listen to it.


By being able to relax fully using hypnotherapy audios, I was able to distract myself from the pain and almost ‘distance’ myself from it, allowing myself that few blissful moments of peace. If you have ever suffered from constant, chronic pain, you will understand what I mean by that. It was a tool that became invaluable to me over the years, sometimes my only way of coping with the agony and the only escape from it I could find. It also helped me sleep better, which improved my mood and my coping abilities overall.


I was finally diagnosed with CRPS when a close friend randomly found a leaflet for RSD (Reflex Sympathetic Dystrophy, the previous name for CRPS) in a hospital waiting room. She showed it to me, upon recognising some of the listed symptoms from myself, and it was like someone had switched a light on… I call it my ‘Hallelujah’ moment! Armed with the leaflet, I made an appointment with my consultant who ‘ummed’ and ‘ahhhed’, before passing me on to a specialist. And that specialist, who shall remain nameless but I shall always remember fondly, finally diagnosed CRPS. Nearly four years after contracting it. I finally had an answer to all those questions I had - well, some of them – but most importantly, I had a label; a name for it. No longer was I in limbo and no longer did I (or anyone else) wonder if I was going completely mad! It was thought that a motorbike accident I had been involved in the previous year in which I tore the cruciate ligaments in my left knee, but had completely recovered from, was the original cause of the CRPS.


Over a long period of time, with the help of a great physio team, I slowly worked on my muscle strength and, although I had to relearn to walk (which is much harder than it sounds!), I was eventually able to rid myself of my wheelchair. The hypnotherapy giving me the mental room to be able to focus on my physicality.

I was finally made redundant (unsurprisingly) from my publishing job - although they had been very good at supporting me when I couldn’t commute into work and had to work from home - and my then-husband and I decided to make the move from Kent to the Leeds area, where he is from. I found a fantastic GP who was the most understanding doctor I have ever met, who referred me to a charity called SpineFit+ predominantly for physiotherapy. There I met a physio called David Walker, who changed my life. Not only did he help me to build my leg muscles back up, relearn to walk without both crutches and regain full motion in my knee, but he also introduced me to the idea of Spinal Cord Stimulation (SCS), something I had never heard of.


After a number of appointments with the incredible Dr Bush and the Leeds Pain and Interventional Neuromodulation Service team, overcoming a substantial waiting list and having a trial SCS fitted, I finally had an operation to implant the SCS system – 7 years after first contracting CRPS. The system involves a series of electrodes being implanted along the spinal column which act as a sort of glorified internal Tens machine, interrupting and reducing the pain signals from the brain. I admit to being terrified by the operation and practised self-hypnosis almost religiously before, during (I was awake throughout the operation) and after the procedure. I have no doubt that it was this that also kept me going through the horrendous months of recovery I endured; the ability to distance myself from the pain and cope. Well, the hypnotherapy plus the knowledge that there was a small chance that this would reduce my daily pain levels, of course. Which, I am more than happy to say, it did. Dramatically. After I had properly healed, my pain levels went from (on average) around a 7-8/10 on the pain score to around a 3-4. And to anyone who suffers persistent pain will understand how unbelievable that must have felt; the relief to not be whimpering with every single movement made; the mental capacity to actually start enjoying the smaller things a little more… The operation gave me my life back. While I was bed-bound, I practised self-hypnosis; as I became stronger, I attended Solution Focused Hypnotherapy sessions.

I found Solution Focused Hypnotherapy completely different from any other therapy I had attended. Because it is ‘solution-focused’ rather than ‘problem-focused’ it can have a dramatically positive effect. I found it refreshing to be encouraged to think about the positives rather than the negatives; I spent most of my days bemoaning my luck and my life, so to have to think of good things was initially quite a chore. I was taught coping strategies and a different way of thinking.


Gradually, as my recovery continued, I began to feel better in myself and much more capable. Over a period of time, my hypnotherapist helped me to consciously increase the amount of dopamine and other positive neurotransmitters that I was producing naturally, thus encouraging mor