Pain is different things to different people. For people with arthritis pain it is not a single pain, it is on-going, and can be very debilitating. Pain is not just what you feel in your body; it also affects your well-being and daily activities.
We have asked our lay advisors to tells us what topics they feel are important in arthritis pain research. These are some of their suggestions.
Why do people get arthritis pain?
Arthritis pain affects the lives of many individuals and their families. Identifying those at risk, or in the early stages of this condition, may help slow down the progression of pain.
The Pain Centre is investigating what causes arthritis pain, and also what puts people at risk of developing worse pain. We are hugely indebted to the large numbers of people are helping us with our studies by filling in questionnaires, allowing us to do tests on them to see how their pain pathways are working, and donating tissue samples for our laboratory studies.
Lynda Tainton recognises a number of factors that may have contributed to the early development of her osteoarthritis at the age of 40.
“One thing that worries me is that my father is full of arthritis, my grandmother was full of arthritis - it’s gone down the family and I’m scared for my children.
I don’t want them to go through this, and I would like to see more research done into the genetics side and into the pain side because pain is so disabling isn’t it – if you’re in pain everything you do is with a grimace. There is not really much enjoyment in life if you’re in pain all the time.
I’ve had osteoarthritis about 11 years. I was rushing for a train and I just fell off the curb and my knee was injured, and that was the start of it - so it took something as simple as that to bring it on.
If I’d known that I’m prone and that I might get arthritis, you probably would do things differently. Look after yourself better. Not always easy when you’ve got a young family and you’re rushing around and you don't really have time to look after your diet."
The quotations are from interviews the Pain Centre carried out with members of its Patient and Public Involvement Advisory Group (Dec 2011-Jan 2012).
Impact of pain on health and well-being
Pain can affect relationships and social life, and restrict the ability to live life to the full. Researchers at the Pain Centre are examining how best to help people to get what they want to out of life even though they have painful arthritis. Based on what we have learned from people with arthritis pain, we are investigating both drug and non-drug treatments to help people to manage their pain.
According to David Hird people don’t always understand that arthritis pain may lead to social isolation.
“I think that is the issue - the social exclusion or the potential social exclusion - feeling you slow people down or you’re letting people down.
I would have loved to join a rambling club and obviously I can’t. I wasn’t a massive walker but I would enjoy walking and seeing the countryside, and so that bothers me a lot. I do feel a certain amount of restrictions in that respect, and also to some extent socially in anything that involves a bit of exercise, like dancing.
So I think there is a social issue with arthritis that may not be always thought about. I do know that one of the Pain Centre’s research proposals involved the idea of getting people to manage the pain, manage their lives, and work with the pain, and I would support that.
One of things that I have got out of being part of this [Pain Centre’s lay advisor] group is being in the same room with people who are pretty much in the same position as me - I get a lot of pleasure out of talking to these people.”
What worsens arthritis pain?
A lot is already known about things that cause pain and make it feel worse; however how all those factors contribute to the final experience of pain is incompletely understood. A key question is why pain in some individuals with osteoarthritis progressively becomes more severe, whilst for others with apparently similarly affected joints it does not.
Stevie Vanhegan hopes to see better and earlier treatments for osteoarthritis to reduce pain.
“I expect a greater understanding of what gives rise to the pain so that lay people like me can understand how to manage it better.
It just seems that it shouldn’t be something that affects your daily life in the way that it appears to. The biggest part of that is the pain - pain is the thing that gets in the way most. I want to have a better understanding of what is actually happening inside my knee so that I can learn to manage the pain better.
Obviously it would be absolutely fantastic if this could be used to develop more effective painkillers. Painkillers work in different ways so rather than pain blockers, which is one way of stopping the pain, I would prefer something that actually changes the chemistry inside your knee so that things don’t hurt. I mean, why do we have to wait until we’re in really, really bad pain?”