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Dan’s story

Dan Wilson, 39 from Leeds, has been living with a form of restless leg syndrome for 12 years. He ended up taking more than the maximum recommended doses of Morphine and Oramorph combined. You wouldn’t have even known he was addicted…but he knew. And his family knew!

I was born with a mild form of cerebral palsy. It means I have a weakness on the left-hand side of my body. It never stopped me enjoying sport or working as a pub landlord.

In around 2008 I started to experience pain in my legs. I visited the GP who prescribed Co-codamol, taking one or two, as and when needed. A year later, the problem was worse. I was just coping at work on crutches and was taking the maximum dose.

I progressed to Tramadol. In a year, I was taking the maximum dose. Again.

Eventually, I had to give up work. It was impossible to manage the pain and work in an environment where I was on my feet for up to 12 hours a day.
Each time I increased the type of opioid I was taking, the pain would reduce for a while, creep back up and I would continually increase the dose. The pain always came back in time, only worse!

I thought I’d hit the jackpot when I moved to morphine. I’d been in a wheelchair and could walk again – brilliant! But, the same thing happened. After just a few months, the pain increased and before I knew it, I was now taking the maximum dose of Morphine and working my way through 600ml of Oramorph. Every. Single. Day.

I think my body became immune to its effects. Anyone who did not know me, wouldn’t have realised the amount of opioid medication I was taking. Mentally I could completely function.

Breaking point came in October 2019. The pain had been so unbearable at times I had asked doctors to sever my spine. I’d rather live without the use of my legs than in the excruciating daily pain. I was staring 40 in the face, I was maxing out on opioids that weren’t touching the pain. There was nowhere else to go. Something had to change!

I decided I would rather live with and manage the pain and be medication free.

I knew coming off this huge amount of medication would be bad. I was terrified! I spoke to my mum and cried.

I needed the support of my family if I was to succeed.

I went to see my GP thinking I’d have to go into some sort of rehab. I was referred to the pain management service, and together with the pharmacist we created a plan to slowly reduce the amount of opioid medication I was taking.

I requested daily and weekly prescriptions. I did not want a month in advance again. I needed to know the supply was limited!

Each time I reduced the quantity, I’d experience shaking, sweating, anxiety – all the things you think of when you think about withdrawal. I had to be resilient and mentally tough, knowing the end goal was to be medication free. I probably pushed faster than the medical professionals would have liked but I needed to get to the end.

I still had the red-hot pain in my legs, but mentally I felt better. I started in October 2019 and was finally clean of opioids by March 2020.

It was such a mental high to know I was no longer physically addicted. When I look back now, I realise I was constantly clock watching for my next dose. Holidays, weekends and Christmas my first thought was to ensure I had enough meds to get me through. I’d take my evening dose an hour early, and pretend I’d go to bed early. Opioids were all consuming!

I have a 16-year-old son. In the dark moments of withdrawal, I would focus my thoughts on him to help me get past the worst.

Today, I’m back in the world of work and volunteer for Cancer Research. I am always in pain. But I cope. Sometimes it’s only a one, other times up to a seven or eight. It’s definitely no worse and I believe it’s actually better. I take hot baths, they help. I also find driving distracts my mind from the pain. I try not to have routine, to help keep my brain on the back foot. I’m walking, albeit with a crutch for distance and love nothing better than to get out in the Yorkshire countryside!

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