Patient and public information
Patient and Public Engagement
Meeting and talking to people, groups and local communities is really important for telling people about our research. We will try and get out and about to meet as many people as we can to share our research news. We will also post information on-line to keep patients and the public up to date with our research.
We will regularly post lay summaries of our research studies on our Research Publications page.
There are many ways you can help us, for example, by telling people about the research that we are doing by talking to your family, friends or groups and clubs that you might belong to.
If you are a member of a support group and would like someone to come and talk to our group about the research that we do here at the Arthritis Research UK Pain Centre, please contact Kirsty Widdowson, email@example.com or tel: +44 (0) 115 924 9924 ext 76772
If you would like more information about engagement and research, please see the Frequently Asked Questions page.
To read some of our patients' experiences of pain related to osteoarthritis, please see below.
What is arthritis pain?
Arthritis pain is caused by signals from the diseased joint after they have been processed by the nervous system
Much of our research concerns pain arising from osteoarthritis, which is the most common form of arthritis and affects around 8 million people in the UK. Arthritis can affect young and old and affects different joints in different people.
Osteoarthritis is characterised by progressive deterioration of the cartilage (the cushioning in the joint). It can affect any joint, and is particularly a problem in weight-bearing joints such as the knees and the hips. Some people get osteoarthritis some years after they have injured a joint, although for most people osteoarthritis develops without any obvious reason.
The biggest problem for people with osteoarthritis is often pain. However, arthritis pain is not simply due to damage to the joint, and some damaged joints may not be painful at all. Inflammation and changes in the way that the body processes pain signals each influence what the joint feels like.
For more information about arthritis and how it can be treated, please click here.
Patients' experiences -- Arthritis pain affects people differently
Pain is not a single thing. Different kinds of pain can be due to different effects of arthritis on different parts of the joint. Arthritis pain is influenced by many things; for example, how our nervous systems process pain signals as they pass through the spinal cord and brain, whether we are happy or sad and whether we expect that the pain will go away. Arthritis Pain may vary; it may come and go or may be there all the time. It may be dull or sharp, mild or severe.
People’s experiences of arthritis vary and so do the ways that they cope with their pain. The good news is that arthritis can be managed, although more effective treatments are still very much needed.
Peter Robinson has arthritis pain which affects the use of his hands, but he can’t take pain killers because they have caused side-effects and interfere with his heart medication.
"The main thing that bothers me is the pain that comes very sudden, catches you out."
I have got a dull ache that I’m aware is a problem but I tend to ignore it, so I don’t let that bother me. I can’t say I’m in constant pain but pain does come when I actually start to use my hand for anything. From rest to moving can cause pain, you pick something up and suddenly drop it - it might be a cup of tea, it could be anything.
That is the side of it that I don’t like. It can make you clumsy. I’ve had to go back to the bank to give them another sample signature because arthritis has affected my right hand and the way I can write. So there are one or two rather deep things you don’t think about that come with the problem.”
According to Joyce Dewick osteoarthritis runs in her family and affects both the older and the younger generations. She has had both her knee joints replaced, but her mobility is still limited by pain in her hips and her right foot.
"It's the quality of my life which bothers me about it - some days I can hardly walk with my foot."
At the moment my foot, touch wood, is not bothering me, and it won’t bother me for ages. Then all of a sudden I get the most chronic pain, and sometimes it practically brings tears because it’s that painful.
It’s the same with the pain in my hips. I can have bouts of pain, and I have niggles as well, of course, like everybody else is in their 60s. The pain will niggle me and it will either pack it up or I ignore it, but occasionally I have a really bad pain in my foot and then I probably can’t walk for a bit.
I know my arthritis is getting worse and it’s going into my foot more now. I’m stubborn as a mule when it comes to walking. I do have a walking stick but I refuse to use it because if I rely on my walking stick my hips start to hurt because I don’t walk properly. It sounds silly, but I don’t walk right so I don’t use the stick unless I’m really in a lot of pain with my foot.”
Barbara Buckland feels that stress and feeling down can make her osteoarthritis pain worse. Retiring from a physically demanding job and working on her attitude have helped her to reduce and cope with pain.
“You have got to be positive - meeting other people with osteoarthritis is important as well because you learn from them."
I think it's good to talk and help people because arthritis isn’t very nice, especially in the young. It must be very heartbreaking to have to give up your job because of it.
I’ve had a lot of stress in the past and I do think that that has something to do with arthritis pain. When you’re very down and depressed, I do think the pain goes to the weakest part of your body and in my case it’s obviously my knee. This last year I have tried to be more positive and I think that has helped.”
Dean Collier has found exercise, relaxation and talking to other people with arthritis most useful in coping with his knee pain. Developing knee osteoarthritis in his early 40s meant leaving his job in engineering and changing the way he runs his daily life.
“I do a lot of activities like swimming and keep-fit classes which help me to relax and ease the pain that way - I’m a great believer in working away from medication."
I always think that if you can speak to somebody else that’s going through a similar sort of thing to yourself, that gives you more ideas. There’s more than just pain killers to help you through, and I’d like to get that message across. Don’t get me wrong, I have my bad days, when nothing I’ve tried works and I’m in such pain – that’s when I take painkillers, as a last resort.
The main thing is not being able to do what I want to do when I want to do it. I always have to plan things very carefully that I don’t do too much. That really bothers me because I’ve always been a type of person that once I start a job I like to see it through.
Now I feel sometimes as if I’m an old man. That worries me because I feel as if I just can’t do the things I used to do. I always thought that osteoarthritis was something that only old people suffer with, but it seems though now more than ever it’s sort of getting a young person’s disease as well.”
The quotations above are from interviews the Pain Centre carried out with members of its Patient and Public Involvement Advisory Group (Dec 2011-Jan 2012).