CRPS and me

My world changed completely on August 9, 2011. I slipped on my way to work. That’s it. There’s no dramatic accident, no traffic smash or fall from a ladder. Just a fall over broken pavement, an accident that should have been a mere memory after a few weeks.

At the time, I was 34, happy and healthy. I’d recently started a dream job. I had the life I wanted. I didn’t think it possible that within a year I would be unemployed and unable to work, reliant on a wheelchair, broke, and hardest of all, in constant unbearable pain.

Familiar story

My story will be sadly familiar to the many sufferers of Complex Regional Pain Syndrome. The fall snapped the ligaments in my ankle, which should have led to six weeks in plaster and some physio with an eventual full recovery. That didn’t happen. I came out of plaster and the injury that should have healed, the pain that should have gone, did not. It just got steadily worse. And it was such pain, pain unlike anything I’d ever experienced before, a pain that was inescapable and deep inside and felt like someone slamming an ice pick in my nerves. My leg alternated between freezing cold, feeling like a lump of ice, to scarlet and burning hot, radiating so much heat that you could feel it from a foot away. I thought I was strong and stoical but this new pain defeated me utterly; there was nothing I could do to make it any better and it dominated every single thought I had. I felt like I was losing myself. I couldn’t sleep. I could barely eat. I cried all the time. The pain regularly made me vomit and caused crippling migraines. I lost my beloved new job because I was no longer well enough to do it and started to become depressed.

I was lucky in that I got my CRPS diagnosis at 3 months, which, according to the research, suggests I should have had a good chance of remission. But it didn’t happen for me, despite everyone’s best efforts. More and more medications were added, with a range of unpleasant side effects from constipation to weight gain. I tried so hard at every treatment that was suggested, from physio- and hydro-therapy, to desensitisation, visualisation, meditation and mindfulness. I greeted every new option with an optimism that this one would be the magic bullet, the treatment that got me back to where I was before this stupid fall. I never allowed myself to consider even for a second that this change could be permanent. That thought was simply too terrifying to even contemplate.

Invasive

By mid-2012 I’d exhausted every conservative option and the only thing left to try was something very invasive: a Spinal Cord Stimulator. This controversial operation involves electrodes being placed in your spine at the place where the nerve from the painful part joins the spinal cord. A small battery is implanted in your hip or abdomen, which then sends an electrical current down the nerve, tricking the brain into feeling tingling instead of pain. As it’s so invasive and expensive, with each unit costing around £25,000, every patient first has a trial implantation to see if it works for them; for me it was brilliant. It was the first treatment I’d tried that really did decrease the pain. The trial lead stayed in for 10 days and I sobbed after it was removed; I’d got used to turning the stim up when the pain got bad and no longer having that option was simply awful.

I had the full implantation in July 2012 and for a short, delusional while, thought I was cured. The combination of the stimulation with strong painkillers for the surgical wounds left me pain free for a couple of weeks and I could walk almost normally. Unfortunately as soon as the medication decreased the pain came back and I had to face the unbearable: this condition was not going to go away. My life had changed and it was never going to change back.

Benefits

I tried very hard to accept my disability, applying for the relevant benefits, moving to a more accessible flat and getting a new automatic car so I had some freedom. My parents were incredible pillars of strength, supporting me physically, emotionally and financially; I’ll never be able to repay them for everything they’ve done.

I had a brave smile for the outside world, but I was dying inside; I didn’t know who I was or why I existed any more. My job had been completely central to my sense of self and without it I was utterly lost. I became seriously depressed and had a lot of suicidal thoughts. I didn’t really want to be me anymore. I’d love to say that I found a miracle answer to this troublesome new identity but it’s just not true; it took months of heartache and a lot of help from my family, friends and professionals before I found a way to accept that this new version of me wasn’t worthless.

The moment that really changed everything was when I met the man who is now my husband in early 2014. He didn’t see the disability, he saw me. It’s not that he ignored my crutches or my wheelchair, in fact as he’d worked as a carer in the past he was fantastic at understanding what help I needed. It’s that for the first time since my accident I felt like my illness didn’t define my identity. He made me feel that I was worthwhile again. I was loved and I could actually start to see a future.

BLB Solicitors

In the present day, life is good. It’s really good. It’s not in any way where I imagined I’d be at 39, but I love my life and am so grateful for what I have. I’m a wife and a stepmum and those are the most important and meaningful jobs I will ever have. I still have constant terrible pain which often leaves me bedridden, but it’s just not the most important thing in my world anymore. My CRPS personal injury claim, handled by Richard Lowes of BLB Solicitors, settled last year and has enabled us to buy a house in a lovely village and (most importantly to me) get a very fluffy, very silly and very loving dog who is my constant companion.

I will be writing some pieces for this blog on living with chronic pain and the issues it presents. I will talk about the legal process of going through a personal injury claim from a claimant’s perspective, mainly because I really wish I’d had access to that when I was going through it. I will explore current treatments for CRPS and chronic pain and look at the range of options available from a patient’s viewpoint.

I share my story to maybe give someone hope; a chronic pain diagnosis doesn’t have to be a life sentence. Your life will be different, sure, but it can still be a life you love. For a long time I thought I would never be happy again; I’m now happier than I have ever been. There are no miracle answers, no golden bullets, but with the right support in place, life can be really good again.