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Complex regional pain syndrome (CRPS) – a patient’s perspective


IN August 2014 I waved goodbye to my colleagues with the words: “See you in six weeks; heck make it less, I am the best healer ever…”

I was about to have my hip replaced. However, after the operation I  woke to find that along with a shiny new hip, I had suffered nerve damage to my leg below the knee.

Over the next year I had many contacts with the NHS. The nerve damage had a 60% chance of recovery in a year or so, but that pesky numb non-moving area would remain. This was a problem, as because as I had no stability or strength in that foot it meant I couldn’t safely do moving and handling in my job.

There were a lot of other symptoms too, and over the months I asked my consultant many questions, including the following:

  • Why is my lower leg still swollen and discoloured?
  • Why is it that if I hit the area of my foot that has feeling, it feels like I have banged my funny bone to the power of 10, and it takes hours for this discomfort to go away?
  • Why does it feel like my internal thermostat has gone nuts?
  • I’m suddenly sweating so much I get soaked, but my cold foot screams at me with any cold contact, even a breath of air. Why is that?
  • I can’t sleep as any contact with my foot is painful. Why is that?
  • Why do I feel like I have a plaster cast on that is way too small and squishes my foot to the point my toes like in a loony tunes cartoon are going to pop off?
  • Why do I suffer electric zaps down my leg, which are not only painful but can look like Riverdance speeded up?
  • Why does a ten minute walk to the surgery now take an hour?
  • Why is my medication not effective?

Low point
I was scanned, probed, sparked you name it, yet nothing was diagnosed, although the neurophysiological assessment confirmed I had nerve damage.

After 10 months I was very down and at a low point; so much in fact, that I would have cut the useless parasite (my foot) off with a butter knife. Add into that cauldron of despair the fact that financially we were also at our lowest ebb. I only received statutory sick pay (SSP) and the bills were mounting.

My role in my family and life had been swatted away. Others did my jobs as I watched. My self-esteem was squeezed out of  me; I could only walk a few steps; I couldn’t drive; I couldn’t pay my bills and I hurt so much. I would fight it, walk with sticks to the shop, do some weeding, all of which brought pain-filled exhaustion. At times I would wonder if people believed me. I would look in the mirror and think I look fine. Why weren’t multiple tramadol and pregabalin working?

At my lowest point, or so I thought, I went to doctor. I had previously put a brave face on and not always truthful about pain levels; but this time I broke down and told him I couldn’t go on. What’s the point if I don’t know what’s wrong and how to fight it? I was referred to the chronic pain clinic.

The diagnosis
Some weeks later I attended my appointment. Three people sat there and listened. I was then examined, and for the first time my foot was also examined – they didn’t ignore me. A breath of air can make it painful, so for once they didn’t pick my foot up.

They pointed to the colour and the mottled look. They noted nail appearance, swollen leg and foot, lack of body hair in area. They asked if they could lightly touch to get temp and noted it was v cold. Yes, go back and read again they asked, and they touched lightly. Now there was some pain but that was nothing, as I was believed, my wishes were accepted and acted on. I wasn’t a sham because the medical profession by their actions supported me.

After the examination I sat and they gave their diagnosis. I had Complex Regional Pain Syndrome (CRPS). The doctor spoke about the Royal College of Physicians’ Budapest Criteria, the diagnosis and treatment. I left with information that included I may never recover, or it could take a long time.

I shook their hands and smiled, I now knew my nemesis.

My treatment has been infusions, but most importantly specialised physiotherapy. Lately, a course of physio and psychiatric input. I still have CRPS, but now have the tools, not to beat the pain, but to help me carry on despite it. I still have big flare-ups and still have major pain, but now I own me, the pain doesn’t own me.

Some treatments work for some but not for others, but it has to be more than medicines which produce fog brain. A term that most people on strong pain management will understand.

Ongoing support
CRPS can be a lonely life, not able to work or do things. One of the strongest tools for me was joining a support group. CRPS-UK has helped support me and help me feel I’m not mad. It has helped me through flare-ups and their knowledge and experience helped calm me. Like so many groups this is a charity and relies on members doing great challenges with sponsorship, their aim is to have a greater recognition, and for the medical profession to have a greater understanding, of the condition.

This blog was contributed by Nigel, who suffers from CRPS

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