I have lived with complex regional pain syndrome (CRPS) for over a decade. I get real bad pain in my left ankle and foot and sometimes the whole left side of my body seizes up. In the winter, my damaged foot feels ice cold compared to the other foot and it goes into spasm sometimes when I go swimming if the pool isn’t warm enough.
I take strong medication every day and it helps a bit, but for the most part I am in a lot of pain and because of that I find it difficult to sleep or to work for more than four hours per day.
I believe I developed complex regional pain syndrome because my GPs didn’t listen to me or take action at the right time. I hope my story will encourage people to speak out against GPs who fail to respect what Disabled patients tell them.
My foot problems go back a long way. When I was 15 the doctors operated on my left big toe to cut out an extra-large bunion. They had to put pins in afterwards, they said, because the bunion was so big.
I had to give up football then because the pin pressed into my skin when I ran or kicked a ball and really hurt. I loved my football so that upset me.
My ankle suddenly started going on me.
Then just before my 20th birthday, my ankle suddenly started going on me. I had no idea why. I hadn’t done sport since my previous operation so I hadn’t twisted it or nothing. For a few weeks I didn’t tell anyone, but one day when I was out at the N1 shopping centre with my Mum my ankle gave way in front of her. She asked me how long it had been going on for and why I hadn’t told her. I said it was because we’d just lost ‘Little’ Nan and I didn’t want to worry her.
After that we went to the GP on many occasions to ask for help with my ankle, but they didn’t listen to me. After about two and half years, a GP finally referred me to the hospital, but the specialist wouldn’t listen to us either so we insisted that he refer me to a different ankle specialist, which he did.
We went to the GP on many occasions to ask for help with my ankle, but they didn’t listen to me.
The new specialist run a few different tests and then announced that all the ligaments had snapped and I needed urgent reconstructive surgery. He told me there might be some complications because by then I’d had the problem for about 5 years and this procedure was normally done within six months of the ligaments first becoming detached.
We went ahead with operation, but although they managed to stitch the ligaments back together, it left me with complex regional pain syndrome. The ankle was more stable now, but the pain in that area was worse than ever and it was more sensitive to changes in temperature. At times the pain and lack of sleep can cause me to feel depressed.
I remember when I went to pain management meeting at University College Hospital (UCH) and they asked me how I felt about my ankle and foot. I said the best way I could describe it is that my foot feels like a puzzle that’s been taken apart and the pieces won’t fit back together again. It’s like it’s not even my foot even though I know it is.
This condition affects my day-to-day life. Just getting out of bed or going out can be difficult.
But the complex regional pain syndrome has given me a better understanding of the barriers other Disabled people face on a daily basis. I have other impairments too (Dyslexia and Learning Disability), but it was this condition that really opened my eyes to the challenges we face in different areas.
But the complex regional pain syndrome has given me a better understanding of the barriers other Disabled people face on a daily basis.
It’s helped me see that some employers are not very understanding and don’t make any reasonable adjustments for people. I can’t work more than four hours a day and I can’t work in the evenings because by then I’ve had three lots of pain killers and am totally zonked out. My previous employer, Maplins, knew all this but they still pushed me to take on an evening shift.
It’s also help me think about and take action on access issues on public transport and in gyms and swimming pools because of all the barriers I face in those places. I’ve written stories for this site on the problems I’ve faced at Islington and Camden gyms and swimming pools because they haven’t got the right equipment in place or they’ve let the water get too cold.
My whole experience with my ankle has helped me realise that sometimes unexpected problems can have their benefits. My anger and my insights motivate me to do volunteering with Camden Disability Action. This allows me to still be a part of the community and make a difference to Disabled people’s lives and make a lasting changed to how disabled people are treated by GPs, hospitals, social workesr, local councils and other professionals and organisations.
