Hello, I'm Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity that provides information and support for those of us who live with pain. This edition is made possible by Pain Concern's supporters and friends. More information on fundraising efforts is available on the Just Giving page at painconcern.org.uk. When arthritis flares up, especially for the inflammatory forms of arthritis, it is excruciating. You do not sleep. Oh, you're looking better is one of the worst things someone can say. They mean it as a compliment.
But actually, it can just be like, I might look fine, but I'm really hurt right about now. Oh, you're too young to have arthritis and you spend your life going, well, actually, no, I'm not. Babies can be diagnosed with arthritis. It can happen at any age to anybody. In today's edition of Airing Pain, we're coming to grips with a question by Judy on Pain Concerns Message Board. It relates to the 10 million or so people in the UK who have arthritis and, of course, their families, each affected in a unique way. This is what she says. My husband has arthritis and has recently suffered a very bad flare-up. I think one of the issues for people with pain is the lack of understanding in those around them of what they're going through.
I know that in my husband's case, he has the just need to get on with it attitude, which can often be misread. So they also have to take on the burden of educating those around them about what living with pain is like and how they may provide a better supporting role. What resources are there to help people in this situation? Well, Judy, today we're looking at one such resource provided by the charity Arthritis Care. But before that, we need to know what arthritis is. David Walsh is Associate Professor in Rheumatology at the University of Nottingham, and he's Director of the Arthritis Research UK Pain Centre. Arthritis is an overriding term used to describe a whole series of conditions that affect the joint, ranging from what's the commonest form of arthritis, osteoarthritis, which I tend to think of as a kind of repair response in the joints.
And then through to conditions such as rheumatoid arthritis, which are inflammatory conditions which erode and damage the joints. Osteoarthritis probably affects everybody at some stage in their life. Conditions such as rheumatoid arthritis are much less common, but are very important because they cause a lot of problems. So maybe 2% of the population in the UK may have rheumatoid arthritis. And then there are some other forms of arthritis which are much rarer than that. One of the factors that's common across all forms of arthritis is that they cause pain.
My pain is always there. It's like a subtext going on. This is Jo Cumming of Arthritis Care. My ankle is reminding me now. It's like a low-level, deep pain. But it's not bothering me because I'm used to it. And I guess, for me, that's normal. However, at times, it feels like somebody has got a red-hot needle and they're just...
poking away in that joint and you're wincing as I'm telling you this and I'm sure there are a lot of people who identify this and it's like then it turns into maybe a nail file that's grinding on the bone and that's a bit horrible and with arthritis I mean especially sometimes that sharp pain is accompanied by the noise of the bone grating on the bone which is horrible and when you hear it it's not so much the pain it just makes you feel sick you know There's a lot of damage going on there. It's such a visceral reminder that things are not right. Well, I'm glad you can laugh about it. But you talk about a low-level pain. I know what a low-level pain is. That's fine today. I can cope with that today. You can probably cope with it today. But it's there tomorrow. It's there tonight. It's there tomorrow night. And it stops you sleeping. It's the whole quality of life. When arthritis flares up, especially for the inflammatory forms of arthritis, it is excruciating. You do not sleep.
It hurts to move, and yet we tell people all the time, exercise is great, and they say, yeah, but it really hurts. How people understand their pain has an important impact on how they manage it. If, for example, you understand the pain in your knee is being a sign that your knee is being damaged by whatever it is that you're doing, then you'll stop doing it. Now, it could be that, in fact, what you're doing was the best thing in the long term, and therefore if you stop doing it, then actually you'll do worse in the long term. In other words, sometimes what we believe about what's going on...
can inhibit us, can prevent us from pursuing a treatment. So, for example, if you twist your ankle, it hurts to walk on it. And the instinctive understanding of that is if it hurts when I'm walking on it, I must be doing more damage, and therefore I should stop walking on it. And yet we know that if you don't walk on a twisted ankle at all until the pain's completely gone away, then you'll end up with a weak ankle. You'll lose the protective reflexes, and then you're more likely to go over it again. You're more likely to get a twisted ankle again. So, in fact, what we tend to advise is that as soon as people can, they should take the painkillers, but they should try and walk as normally as possible on the ankle so that it repairs in a way that actually it does the things that they want it to do in the long term.
which is in some ways counterintuitive. The same thing applies to, for example, osteoarthritis of the knee. People stop walking because they've got pain in their knee. Then, in the short term, the pain may feel better. But in the long term, as they lose the muscle strength around the knee, and again the protective reflexes, they may become more disabled.
In fact, one of the cornerstones of advice for osteoarthritis is exercise. It's about keeping the muscle strong. It's about maintaining your activities. Some days I do not want to go on the exercise bike, but I know that if I do and do it slowly and work through it, it will improve the quality of my pain and help me cope. In fact, now, because I've been really quite good at doing this, it's helped me lose weight. I eat better. I sleep better. I'm more tired physically, and it's good tiredness. It's like you sit down and you think, oh, yes.
And if I don't exercise now, I can tell that next day I am going to be in pain. And swimming is good as well. If I get a chance with a good hot pool or a hot country, I will swim and swim and swim. The exercise bike is 30 minutes a day. I watch Coronation Street. Why not? It's 30 minutes of my life, I'll never get back. But you're going to be sat there watching TV, so I just get the little legs going. Also, it's very important to keep your muscle tone. With arthritis, you tend to have a loss of muscle around the joint.
area with my knees and for most people it's quadriceps that deteriorate so that keeps them nice and strong keeps the joint stable less pain so is exercise suitable for everybody with arthritis you should always get somebody to assess you and the best person for that is a physiotherapist i'm a big fan of physiotherapists we have to explain to people that when they go to their physiotherapist and they get all these exercises it's not just for the six weeks actually your exercise should be for life they're just there to teach you how to do it And Joe Cummings' advice that you should always get somebody to assess you before undertaking an exercise plan very much reinforces our message on airing pain, that whilst we believe the information and opinions are accurate and sound based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. Now, Kate Llewellyn is Head of Information Services at Arthritis Care. She is responsible for the development of information they produce about living with arthritis. The biggest issues for people with arthritis really are pain.
The fact you often can't see pain. I myself have got arthritis and often get challenged because I have a blue badge because people think there's nothing wrong with me. It can be very demoralising and upsetting to be accused of sometimes pretending that there's something wrong with you. The immobility and the isolation, not being able to get about, the fact that it can affect friendships and relationships, it can affect your work. It can get into every part of your life, which is why Arthritis Care is here, to try and show people to help them learn techniques and tips on how they can manage and make things better.
When I say you look fine, I wasn't being patronising. I was actually saying there is no outward sign to me that you have arthritis. And presumably as a member of the public, that affects the way I would deal with you. The worst experience I've had has been to do with parking and the car. And I have a blue badge because I can't walk very far at all. Without my blue badge, I wouldn't be able to get out and about. One time, an older man, this is when I was about 17.
threatened to call the police on me. He was shouting at me in a public car park and just would not believe that there was any need for me to use the disabled space or use the badge. I was quite happy for him to call the police. It was dreadfully upsetting. But more recently, outside my home, I've had a disabled bay put in so I can actually park. I live in London, so parking is always really difficult. And people have scratched my car because they don't believe that I'm disabled. So it's kind of a disability hate crime. And it's really upsetting when something like that happens right outside your house. I'm worried about people coming to your house, threatening your space. And there's not a lot that you can do to prove it, unfortunately.
Kate Llewellyn. Now, amongst the literature Arthritis Care produces, and one of the many benefits of membership as it happens, is a quarterly lifestyle magazine, Arthritis News. Its editor is Minnell Smith. At the moment, I'm actually writing a feature on clothes and shoes, so this is a problem that comes up a lot on our discussion forums where people find it. difficult you know they might struggle with buttons if they have problems with their fingers it can be quite difficult to bend down and pull up stockings or tights for instance so it's sort of this article is looking at what the problems are and potential solutions so that could be things like choosing things without buttons and or choosing things with large buttons and there's also a number of aids available on the market but it's mostly looking at what people can do to help themselves and also looking at obviously people want to you know if you've got arthritis you still want to be able to look good and you know have a choice and unfortunately the market is very much geared towards people who don't have those sorts of difficulties so it's trying to find solutions that are stylish but practical and comfortable. You know I think clothes can have a sort of and how you look can have a big impact on how you feel if you're sort of stuck at home and you know you're struggling with simple things like putting something on and then you end up putting something on that you don't really like or doesn't really look good then it's very easy just to sort of sit there and say I'm not going to get out or do anything so we did a project a few years ago looking at this issue people did say then that things like
using velcro was a good solution and zips are easier than buttons and thinking about where a fastening is so if something's at the back it might be difficult to reach so you can buy garments that have side fastenings and actually that is something you can find in mainstream shops as well because it's sort of a style thing so you can find that choosing a jumper with a big neck so it's easier to pull on so we've sort of had quite a lot of feedback already through through our discussion forums because you can really see what's on people's minds and what they're asking others about And also our helplines team also feed back to us on the kinds of calls they get. Minnell Smith, editor of Arthritis News. The written word, be it on paper or online, is all very well, but when you want help and support and an empathetic voice to talk to now, then this is where the helpline which Minnell referred to comes in. Generally, the first contact is somebody in considerable distress and they just need to get it out, just need to talk. Joe Cumming is Arthritis Care's helpline manager.
The majority of people want to know about the condition and understand it. And often they've been given a load of technical, medical gobbledygook from their GPs or their specialists and they need somebody to help them find their way through to understand what the condition is and the treatments. But the next biggie, and it's only marginally smaller, is people want to talk about the pain. They want somebody to help them to self-manage. And what the team will do is they will...
listen to them, give an awful lot of empathy because they're all trained and qualified counsellors. So that is in itself, for somebody who's lived with pain for a long time, they haven't been able to talk to their doctors or their family even about it, they're listened to. But more importantly, they're believed. Joe Cumming. And the Arthritis Care Helpline is open from 10am to 4pm every weekday. The free phone number is 0808 800 40 50. Or you can email them at helplines at arthritiscare.org.uk. You'll be reminded of all these contact details towards the end of the programme.
Now, there are many misconceptions about arthritis. Here's David Walsh again. He's director of the Arthritis Research UK Pain Centre. It's commonly thought that arthritis is a condition of old people. That's not true. It is true to the extent that any condition that currently doesn't have a cure is going to be more common in old people because we collect things as we go through life.
But arthritis can affect people for the first time at any age. So children can have arthritis and old people can have arthritis. I get frustrated because I hear often people talking about osteoarthritis and back pain as being degenerative conditions. And degeneration to me means wear and tear, like a car. And the more miles you do in a car, the more bits wear out until you can't replace them anymore and then you get rid of it. And there's a big difference between things like back pain in a car. The back's not wearing out. What's happening is that it's constantly repairing itself. And the changes that we see on the x-rays are a consequence of that repair process.
So in fact, people are not wearing their bones out. People with back pain don't have thinner bones. They've actually got more bone. You see extra bits of bone. Discs on the x-rays may look narrow, but that's not because they've ground down like a washer and machine. They look narrow because they've been replaced by something else that does the job that takes up less space. It's better like looking at your skin and seeing scars and thinking that your skin's wearing out. It's not wearing out. You know, you cut yourself, get a scar, you know what's happened, because the job doesn't look the same, but there it is. So these conditions, they're not degenerative in the sense of a car wearing out. And I think that that's important because it changes the way that you look at it. For your body to repair itself as well as it can do, it needs to be used.
which is the exact opposite of wear and tear. The more you use a car, the more it wears out. By keeping using your body, it repairs itself better. And secondly, if it was wear and tear, then the older you got, the worse it would get. But in fact, that's not what we find. A lot of these problems become a peak problem in late working life and then may become less bothersome as time goes on. It's not simply a case of, oh, you've got arthritis, therefore it's going to get worse the older you get. It's much more complex than that. This isn't wear and tear like a car. I'm 24 and I have arthritis. This is Lexi Barber. She's Editorial Coordinator for Arthritis Care.
So you're 24, you look fit and very, very well. You don't have what I associate with arthritis, which is the conker-like knuckles. How do I know that you have arthritis? You don't. That's the trouble. It's one of those invisible disabilities. And the classic image of the painful hands is very misleading because it can affect any joint and it can affect anyone in any different way. If you were to look at me, you wouldn't know, but it's because mine's on my knees. So if you were to watch me walk over a longer period of time, you'd realise that it's a struggle, but you wouldn't necessarily know why. Or you might just think I'm really lazy.
So how does it affect you? You just kind of have to rely on your friends and make sure that they know that you're not just being difficult when you say, can we not go to that pub because the toilets are up two flights of stairs and I don't want to have to keep going up and down because I know we're spending the entire evening here. And you have to know that they will adapt to you and not be afraid to communicate that with them, at the same time not come across like a hypochondriac. So there are two things here. They have to be, I wouldn't say sympathetic, but not sympathetic, empathetic to your condition, but you also have to be able to explain to them.
what it's all about yes definitely and my closer friends definitely have picked up that I don't need to communicate it to them anymore they can tell when I'm having a bad day and they've learned to filter in rest breaks without making a thing of it whereas at first it was very much like do you need to sit down and because that put a responsibility on me to slow everyone down I was just like no no I'm fine let's carry on and then I pay for it the next day but now they're just like let's all sit down for a bit and they don't make a thing of it so it's it's definitely about give and take and communication but that's good friendship isn't it yes definitely And it's taken a while to get there as well. And I do still have a few people who just look at me and go, there's nothing wrong with you, you're young. Oh, you're looking better. Oh, you're looking better is one of the worst things someone can say. They mean it as a compliment, but actually it can be like, I might look fine, but I'm really hurt right about now. And you just sort of get used to biting your tongue and getting on with it most of the time. That was Lexi Barber. And Kate Llewellyn developed arthritis when she was only 13.
I had to have a year off school because I wasn't able to physically get into school and cope with day-to-day life, really. I became, I now realise, depressed and very isolated from my peers. You know, when you're about 15, 16, it's a really important time to be learning about who you are. So it was very challenging to... be running around to be on the netball team to be a hurdler and then suddenly to fall over the hurdles and not know what's wrong with you, which is what happened to me. I was lucky to be diagnosed quite quickly. It does stop your life. It stops you becoming the person you thought you might be. But also for me, developing it as a teenager, it has allowed me to then shape my life, to still do something I'm exceptionally proud of and something that I'm interested in. What is difficult is that people just always go, oh, you're too young to have arthritis and you spend your life going, well, actually, no, I'm not. Babies can be diagnosed with arthritis. It can happen at any age to anybody.
Having to justify it is worse than most. It's like an extra thing of explanation, just to say, it's true, I really do have it, and it affects me significantly. We've recently just released a new booklet for parents of children with arthritis in terms of the challenges that they might face as they're diagnosed and also the strategies that people use to cope with family life. When your child has arthritis, it can affect the whole impact on the whole family. And to begin with, if they're diagnosed very young, so when they're still babies or toddlers, it can be difficult to get a diagnosis because there's a communication barrier straight away that their child can't tell them what hurts and how much it hurts and why it hurts. So the parent has to be quite vigilant in looking out for signs such as swelling. And when they do take them to the doctor...
doctor a lot of the time it can be misinterpreted as just having a knock from being too sort of aggressive when they've been playing or they've fallen over or something and then as you're growing up it's it's simple things if you have other siblings you have to learn how to let them understand how arthritis affects their brother or sister so they might not be able to play rough and tumble as much or they might not be up to family outings in the same way and also in terms of attention obviously you need to look after your child who has arthritis but you also need to make sure that your focus is fairly split as it were you also have other things such as You need to inform your schools that your child might not be able to do PE every day or that they might need regular breaks from sitting or that they'll need more time off than most children to go to hospital appointments and everything. So it's about communicating with who you need to inform about your child's arthritis and how it will affect them.
And as they grow up and as they become teenagers, there's the usual thing of how much independence to give your teenager. And when your child's got arthritis, you have to take that into account. You want to give them more independence over things like how they choose to take the medication. They might want to discuss taking it in a different form or having a different routine or taking charge of it themselves rather than being given the medication. It's all about letting them find their independence.
while realising that they do have to adapt for their condition as well. And the independence thing definitely shows up more when people are looking at college and university. When you're letting them move out, you have to take into account that they are going to be looking after themselves, and it's quite hard for a lot of parents, I think. It's rare that you get osteoarthritis when you're younger. For the kids with the juvenile form of inflammatory arthritis, it's hard to diagnose, it takes a long time. So the parents get really quite anxious about it, and they say, why couldn't they tell us this earlier? Well, it's hard to diagnose, because it could mirror.
so many other juvenile illnesses and it's difficult to know with kids. The pain for children, because for many of them the symptoms have come on when they're toddlers. They live with pain all the time and they think everybody else does. A friend of mine's little girl said, well I thought it hurt everybody to walk upstairs. I didn't realise. I thought that everybody felt pain walking upstairs. And they tell us a lot of interesting things about coping with pain and understanding pain. When you see it through the eyes of children who are actually sort of living it every day.
The mums and dads have to help them exercise and move those painful joints. It's a real eye-opener, and it's moving. The person who we always get in to train the team about parents and about kids, Dr Carrie Britton, and she wrote a great book called Choices, Kids with Arthritis. She can really explain from a parent's point of view, and she showed us some, and it was excruciating to watch. She actually videoed her helping a little girl.
exercise and the tears and the pain. We were like, there was not a dry eye. But it has to be done because you're doing it for your child, but you're hurting your child. But you're doing it so that they'll have a better quality of life later. But it's hard for the kiddie to understand at that point why this has to be. It's about like when you have a child with a chronic condition, not just the pain, but it's like you have that extra, just going out for the day, that extra thing, the medication, the...
packing, getting everything organised. We work quite a bit with families in off-rights care and we have adventure breaks for the children where they can get out and upsell down a mountain. These are kids that probably a lot of society have written off but then you see them and they're out and they're doing the things that other kids in the class can do and they get a chance to do it and it's great. So for parents who are struggling by themselves and need somebody to talk to or anybody involved with somebody. with arthritis they should phone the arthritis care helpline yes and we will send them a free pack of information actually tailored to what they need to know we will talk to them and they and it doesn't end there if they want to ring again they're most welcome we have groups we have self-management training courses they can all access these three it's just the first step for many people And how do we get in touch with you? You can ring us on 0808 800 4050. It's a free call. We're open Monday to Friday, 10am to 4pm. You can write to us, you can email us, helplines at arthritiscare.org.uk or you can get online and chat to helplines on the forum.
Joe Cumming, Helpline's Manager of Arthritis Care. And Arthritis Care also runs a series of self-management programmes throughout the UK. And I've just completed the Challenging Pain Workshop in Cardiff. It's for people with all chronic pain conditions, not just arthritis. And you can hear how I got on in the next edition of Airing Pain. Now, today's programme came out of a very straightforward request from Judy on our message board. So if you'd like to put a question to our panel of experts or just make a comment about these programmes, then please do so via our blog, message board, email, Facebook, Twitter or pen and paper. All the contact details and links to download all editions of Airing Pain are on our website, which is painconcern.org.
And for more details of arthritis care, their website is arthritiscare.org.uk. Now, the last word in this edition of Airing Pain goes to Lexi Barber, and I think it applies not just to people with arthritis, but to all of us with persistent pain. For somebody... early 20s late teens what would your advice be to them and their parents and their friends be open about it because people can't always see the problem and try and communicate it in a i have this it causes me a problem in this practical way and this is how we avoid it because people are far more responsive if you are trying to communicate a practical solution rather than just going oh no my knee's really hurt today they might not understand how you feel pain because everyone feels pain differently they might not understand how it's an ongoing thing. But if you say to them, my knees really hurt today, so can we take the bus instead of walk? Can we do this instead of this? It helps to open up communication pathways rather than just being the one who comes across as always saying, oh, my knees hurt. It's important to be open and ask for help when you need help.