The Pain Returns

Walking along a quiet country lane in Devon on a pleasant summer afternoon, the situation could hardly be less threatening. There was no traffic, the road was dry, the pace was moderate and I was walking with good friends - including a doctor and a physiotherapist. I landed at the feet of the physiotherapist, who moved quickly to stem the flow of blood from the obvious gash in my forehead. But the thing that most worried me was the bloodless injury to my left arm. That was the arm I broke when I fell on Dartmoor eleven years earlier. That was the arm that had suffered the pain of RSD. The return of RSD was what I feared all those years.

Let me introduce myself. I am the founder and editor of RSD ALERT. I have no medical training or qualifications, but I became something of an expert patient through what I learned from the many visitors to the RSD ALERT website. We get all kinds of stories as people share their personal experiences of treatments, medical misunderstandings, medications that work for them and others they wish they had never taken. But one of the more common questions from recovering RSD patients is, "Will the pain return?" I have often replied, speaking theoretically, that there is a risk that RSD might recur after fresh trauma, like another break or surgery. I no longer need to be theoretical about my replies. I broke my arm in five places and had two surgical procedures - and the pain came back.

I started feeling that distinctive burning pain as I was lying in bed with the cast balanced on my chest. There is no mistaking that kind of pain. It's not like the feelings you get from the break itself. RSD pain is distinctive for its nastiness. Someone compared it with the plunging your hand into a tub of boiling water and keeping it there. To me, as the pain returned, it felt like having a boiling hot tourniquet wrapped round my arm and steadily tightened. It was horrible! I can't think how many times I have told people "If this condition strikes me again it will find me fighting back!". Now it was time to stand by my words.

RSD pain defies normal logic; for no obvious physical reason, the brain sends out inappropriate signals creating pain and a range of other symptoms, often including temporary paralysis (the "dystrophy" bit in the name "Reflex Sympathetic Dystrophy" means "paralysis"). Paralysis is ignored in the new medical name for the condition (Chronic Regional Pain Syndrome or CRPS) but, in my case, it is a key factor. Over the years I found that, if I stopped exercising my hand it would start to stiffen up and I would get twinges that weren't quite pain. These new bouts of burning pain spurred me to start exercising the fingers even before the cast came off. And, after discussion with my surgeon, I even had the plaster removed early so I could exercise more of the hand and wrist (very carefully!)

I have good news... the pain didn't last. The first time I had RSD I didn't know what it was. This time I knew what to expect and how to respond. I remembered what my physiotherapist told me years ago, "The more flexibility you achieve, the less pain you will feel" and I determined to follow the same strategy. I began lightly exercising my hand before the cast came off and set about a more suitable exercise regime as soon as the bones were properly fused. My injury was worse than last time, but the fight against RSD showed much quicker success. The pain returned; but it found me ready to resist. I knew a lot about CRPS and how to respond, but I was ready to learn new tricks and my new treatment programme includes "Mirror Therapy". This remarkable treatment proved especially helpful in the early days when my wrist was too painful to put it under strong pressure. Mirror therapy enabled me to do some real exercise, but only within the limitations that the pain allowed.

My new injury was a lot worse than the one I had eleven years previously. The arm was broken in five places and it needed a metal plate and five screws to hold it in place. To add to my problems a nerve became trapped and I had no feeling in some of my fingers after the operation. To release the trapped nerve I had to have a second hand operation, which set the healing processes back several months. At the time of writing I am still working to recover my strength and flexibility. But this is a Good News Story. Yes, RSD pain can return and it did in my case... but not for long. Having battled this condition before, and achieved remission, I had experience on my side. I knew what was happening and I knew how to deal with it.
I am now less fearful of RSD... but I'll try not to fall over again!

© Derrick Phillips, 2010