Sharing your patient journey can often be a help to others living in a similar situation as you. We will be developing this page over the coming months, bringing you stories from both pain patients and their caregivers.
Patient Stories
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My Patient Story - Tim Atkinson
"Diagnosed with inflammatory arthritis in my twenties wasn't quite what I'd expected. I was young, fit and active. Until I wasn't. I cycled, swam, played sports. Until I couldn't. Still, once diagnosed, it would soon be sorted, so I thought. If only...
The pain could be intense; I was prescribed co-codomol. It helped, enormously. At the same time I progressed through various stages of disease modifying treatment until, eventually, after many years, I qualified (thanks to a change in the funding model) for a treatment that began working, eventually working so effectively that my disease could be classified as being in remission. The swelling subsided. My joints moved again, though not as freely as before. I could move again: walk, cycle, swim and so on. But the pain never really went away. The strength of my prescription pain-killers was increased. I felt ok, for a while. Until I didn't. Until the pain returned, until the pills didn't work and I could hardly move.
The consultant didn't seem too bothered. Tests showed that all the inflammatory markers were down to near-normal levels. That was all he seemed interested in. And there were patients much worse than me in the hospital waiting room, patients in wheelchairs, patients struggling on walking frames. In the light of that I didn't feel I could make a fuss.
'Dr Google' came up with a number of suggestions, not all of them crazy. As an ex-psychology teacher I'd always taken an interest in neuroscience and references to new pain models and neuroplasticity intrigued me. I read and read and began to form my own opinions. It seemed clear that my pain was a sort of legacy of the organic, tissue damage I had suffered. The cause was now under control. But the pain went on. And on.
I tried these theories out on my rheumatologist at my next appointment, only to find it becoming clear that I knew more about recent pain science than he did. The same occurred when I discussed it with my GP. No surprises, I suppose, given the optional afternoon on pain most medics seems to get during training. So I became my own pain expert. After all, ‘The true experts when it comes to understanding the problem of persistent pain, its impact and potential solutions, are those challenged by pain who take on a journey of discovery and manage an often remarkable recovery.' So says Professor Lorimer Moseley.
Not only did I find out more about pain than I ever thought possible, I found that knowing some of it helped ease the pain, too. Knowledge is power after all, so they say. The growing feeling of knowing, being a little more in control, a little better informed, understanding myself better, began to have a marked effect on the level of pain I was feeling. Without subscribing to any of the 'fixes' that go with the territory, I found that my research alone was giving me some agency and that - rather than any specific discovery - the more I found out the better I began to feel.
It's not a miracle cure, of course. There are still good days and bad days, but I'm now far better informed about what the likely causes are, and better able to ride out those waves knowing that things can, and do, get better."
Why not take a look at Tim's book which is available via Amazon - Where does it hurt?
"Diagnosed with inflammatory arthritis in my twenties wasn't quite what I'd expected. I was young, fit and active. Until I wasn't. I cycled, swam, played sports. Until I couldn't. Still, once diagnosed, it would soon be sorted, so I thought. If only...
The pain could be intense; I was prescribed co-codomol. It helped, enormously. At the same time I progressed through various stages of disease modifying treatment until, eventually, after many years, I qualified (thanks to a change in the funding model) for a treatment that began working, eventually working so effectively that my disease could be classified as being in remission. The swelling subsided. My joints moved again, though not as freely as before. I could move again: walk, cycle, swim and so on. But the pain never really went away. The strength of my prescription pain-killers was increased. I felt ok, for a while. Until I didn't. Until the pain returned, until the pills didn't work and I could hardly move.
The consultant didn't seem too bothered. Tests showed that all the inflammatory markers were down to near-normal levels. That was all he seemed interested in. And there were patients much worse than me in the hospital waiting room, patients in wheelchairs, patients struggling on walking frames. In the light of that I didn't feel I could make a fuss.
'Dr Google' came up with a number of suggestions, not all of them crazy. As an ex-psychology teacher I'd always taken an interest in neuroscience and references to new pain models and neuroplasticity intrigued me. I read and read and began to form my own opinions. It seemed clear that my pain was a sort of legacy of the organic, tissue damage I had suffered. The cause was now under control. But the pain went on. And on.
I tried these theories out on my rheumatologist at my next appointment, only to find it becoming clear that I knew more about recent pain science than he did. The same occurred when I discussed it with my GP. No surprises, I suppose, given the optional afternoon on pain most medics seems to get during training. So I became my own pain expert. After all, ‘The true experts when it comes to understanding the problem of persistent pain, its impact and potential solutions, are those challenged by pain who take on a journey of discovery and manage an often remarkable recovery.' So says Professor Lorimer Moseley.
Not only did I find out more about pain than I ever thought possible, I found that knowing some of it helped ease the pain, too. Knowledge is power after all, so they say. The growing feeling of knowing, being a little more in control, a little better informed, understanding myself better, began to have a marked effect on the level of pain I was feeling. Without subscribing to any of the 'fixes' that go with the territory, I found that my research alone was giving me some agency and that - rather than any specific discovery - the more I found out the better I began to feel.
It's not a miracle cure, of course. There are still good days and bad days, but I'm now far better informed about what the likely causes are, and better able to ride out those waves knowing that things can, and do, get better."
Why not take a look at Tim's book which is available via Amazon - Where does it hurt?