In addition to taking medication, there are other ways in which young people managed their arthritis. One important area is keeping active, which can help people maintain the best possible level of mobility (ability to move around). In this section people talk about their different experiences of sport, going to the gym, physiotherapy and hydrotherapy. They also discuss their diet and its impact on arthritis. We spoke to people who took part in all sorts of physical activity. Some were into intense sports such as running marathons, climbing mountains, playing rugby or training in martial arts. Others were happy to exercise at a more leisurely pace and enjoy gentle walks in the countryside or go shopping. Sometimes people didn’t exercise much because their arthritis was bad or because they simply weren’t motivated to stay fit and healthy.
But exercise is so important, there's very few times that we tell people not to do anything anymore because actually we prefer them doing things than not doing anything. Often our physiotherapist will liaise with the martial arts instructor or the PE teacher or the sports person in the sports centre and just advise as… just regarding joint protection. But there's often more benefit of the exercise against the risk so it's just sometimes tailoring exercise accordingly. So it is important to get the advice from the right person. There used to be a… you know you must not do any exercise because it will damage your joints. That's wrong advice and you need your exercise both for your heart as well as some impact for your bone strength, so it is important to get that balance but getting advice from the physiotherapy team is very important.
Taking regular exercise is something that young people could do to help maintain or increase mobility. People described how exercise improved flexibility, balance, stamina, strength and muscle mass. It also helped prevent morning stiffness and joints “seizing up”. In addition to helping with arthritis, exercise has many other general health benefits including improved cardiovascular fitness and bone health. It can also help build confidence and improve emotional wellbeing.
Some of the people we spoke to did sport simply because they enjoyed it.
David is studying Economics at university. He is single and white British.
As long as I’m not in a severe flare I try and exercise as much as I can because for people with AS exercise is absolutely crucial. That’s not to say that people must go and start running. It’s the use of low impact exercise, so it’s swimming, if you’re in the gym using a cross trainer, things that don’t enforce, you know, high impact to the joints. So that’s really important and also the stretching a lot and doing different mobility exercises, such as, even taking deep breaths because if you don’t take deep enough breaths, often enough, you allow the little joints in the rib case to fuse and that can really become a problem later on. So it’s a matter with AS, if you if you do not move you’ll lose, you can you can potentially lose the movement of different joints. It’s very important to keep active. Despite how much pain you’re in, you just need to keep moving.
And who pays for this exercise? Is this, do you pay?
Yes, I have I’m just a member of a gym but, you know, it’s just something that you have to. There’s no substitute to doing anything like that. I am offered physiotherapy services at the hospital that I go to and they just keep it, they just keep on track how my exercises are going, if there’s new problems or any adaptations that need to be done. But in the sense of financing the whole exercise, it’s mainly just joining a gym.
Although some people said they had pushed themselves through the pain when doing exercise, others felt it was important to have a more balanced approached so they didn’t “overdo it” and struggle to move the next day. David Z kept exercising at the gym despite the pain whereas Jessica went with her nanna to “a mobility gym” and exercised gently. She liked the fact that she didn’t have people watching her exercise and enjoyed the company. People could go to the gym to target specific areas of their body that were affected by arthritis.
Kyrun lives at home with his mum, stepdad and two brothers. He is a college student. He is white British.
So it’s mainly the kind of the weights that you use?
Yeah. Just to get a bit of bulk up because when I’m pushing my chair it’s like you have to do it all the time and when you’ve got like quite like stamina in your muscles you can do it.
Do you like going to the gym?
Yeah. It’s beneficial and the girls love it, so
Indeed that’s one way of looking about it. Okay. Do you do any other kind of exercises, maybe swimming?
Yeah. I used to, I still sometimes swim but when I had that really good month I was swimming competitively so that made me feel a lot better at myself ‘cos I knew I was doing something beneficial, and obviously I was doing it ‘cos I love it as well. So yeah.
Okay. So swimming and going to the gym and those are your main ones. And you still swim now sometimes?
Yeah, sometimes when I have like a, quite a good day I think yeah lets scrap one day and lets go swimming for an hour, but then I’ll regret it the next day so.
Some of the people we spoke enjoyed taking part in high impact sports (sports which placed a lot of strain on joints), such as martial arts, rugby and dance. Bradley played football at school, Cat ran several marathons and climbed Mount Kilimanjaro for charity, Lu played in a national basketball league at university, and Beth enjoyed dancing. Some had been advised by their doctor to avoid high impact sports but people sometimes felt their arthritis wasn’t bad enough to stop them taking part. People could use ankle, knee and hip supports for their joints if they needed it.
Jenna is a student studying for her GCSEs. She lives with her parents and younger sister. She is white British.
I do dancing on Fridays and Saturdays. And I like do displays and competitions and stuff. And I walk home from school most days now.
Oh how do you cope with the dancing, that’s very cool.
I’m okay with it actually, it doesn’t really affect me, but the last competition I did about, was it like two weeks ago? Afterwards my hip started hurting, but we think it was just because of like the extra exercise ‘cause like we were practising all day, and like we like keep doing the same dance and stuff.
Oh competition, do you go into competitions?
Have you won anything?
I got a first place in my team dance in March.
What was this competition about? Was it regional, or was it a school, was it a large?
It was cheerleading and there was like 25, maybe more different dance schools competing.
And it was like the UKA or something, I’m not sure.
Exercise didn’t have to be extreme. Taking part in low impact activities was a good way of staying fit without hurting joints. For example, people talked about swimming to improve flexibility and stamina. Other more gentle forms of physical activity people enjoyed included walking on a treadmill, around the shops or across the countryside. Some took part in yoga and Tai Chi to improve flexibility. Doing breathing exercises and stretching could improve joint flexibility but also be calming and relaxing.
People who struggled to keep up the sport they loved sometimes found something new they could take part in. Beth struggled with Ballet because it put too much pressure on her knees but found it easier to do street dance.
Tom is an A-Level student preparing for university. He lives with his parents. He is white British.
Do you feel that there are things that you’d like to do but you can’t?
I miss running. I think running is the one thing that I miss because when I was in primary school I, and even in secondary school in PE I used to run a lot. Running was the one thing that I was good at, which is so annoying ‘cos I can’t really do it now. But I was terrible at sports all year round, football and rugby in the winter, I was horrific. Then when it got to the summer; Tennis and Athletics were the only things I could do. And now I can barely run so, it’s, I think that’s the thing I miss the most. That being taken away from me. ‘Cos I was a good runner. I used to love running and jogging and, that’s, I think that’s what I miss the most about it.
Is the ice skating trying to find a replacement, or is that just something completely different for fun?
That’s just for fun.
It’s just a recent new thing that we’ve found and I can go really fast with little effort so it’s great. I suppose it’s still a little bit scary as well so you get the adrenaline rush.
What about the gym? I mean do you run at the gym.
No. I don’t really run, I try and avoid it as much as possible because the impact on my, on my legs makes my knees really bad the next day. I can run for about 30 seconds and then I’m tired but I wouldn’t like to think it’s because I’m unfit because that makes me seem really unfit, if I can run for 30 seconds, but I think the amount of pain tires you out. And it’s a combination of painful and tired because of the pain that I can’t really run for much more than that. I can still run quite fast and I can still run, I can physically run so if I got chased by an axe murderer or something could get away. But it would definitely hurt the next day.
During flare-ups or for people with more severe mobility difficulties, everyday tasks like getting out of bed, walking up stairs and doing the washing up could be like doing exercise.
Kerrie is a self-employed baker. She is white British.
Did you used to exercise before?
Yeah, I did. I mean I was a gym member and I tried to do as much as possible but I think again, with me now the fact that I can’t do it, makes me want to do it even more and it’s just focussing again on one of those things you can’t do even though you didn’t necessarily do it that much before anyway. So...
Yes. So you don’t have any exercises for the arthritis itself?
I have a few physio exercises and things but, to be honest, I tend to be quite naughty and not do them. I generally do try and be as active as I can like I walk if I can walk. I’ll do things myself but to me, being active is not necessarily about being out there at the gym or going swimming, it’s about being able to get up and down the stairs. It’s about being able to load a washing machine. It’s about being able to cook dinner. That’s different activeness as far as I’m concerned because, you know, I’ve gone from being completely inactive and bedridden, so being able to do those small things to me, means that I’m an active person.
So it’s less about exercising.
To look how, exercising to change the way you look?
And more about developing independence?
And maintaining independence?
I think it’s more about being mobile, about, you know, keeping your joints flexible because, you know, sitting around in the same position, as I learnt, doesn’t actually make things any better anyway, you know. You have to have the right balance between movement and resting.
So and again, you know, walking for me, if I can do it, great. If I can’t, then I’ll do it tomorrow instead.
Some of the people we spoke to went to the hospital to see a physiotherapist. They described how physiotherapists assessed their mobility and gave them exercise programmes to improve mobility or speed up recovery after surgery. Physiotherapists monitored people’s progress such as muscle mass and range of movements and could also focus on affected areas such as hips, knees, elbows, wrists and fingers. People described how the exercises could be “hard going” or sometimes “boring” but their physiotherapists were friendly and fun to be around.
Physiotherapists often gave people exercises to do at home. For example, people had stretches they could do daily before they went to bed and when they woke up to reduce morning stiffness. They could also put together exercise sheets for people to work through at home and gave them things like Theraputty or stretchy bands to exercise with. Charlotte Z said her physiotherapist massaged a ‘knot’ in her back which was causing her problems.
Charlotte is a school student who lives with her mum and dad. She is white British.
Have you ever seen a physiotherapist?
Yes I’ve seen a few.
Are they any good?
Oh well a few of them were okay. And a few of them weren’t like really good ‘cos they didn’t like give me exercises where I needed them. Like when my knees are hurting they didn’t normally do my knees. They gave me exercises for somewhere else. But when I went to [hospital name removed] I have a really good physiotherapist, and she gives me exercises for where it hurts, so I have exercises for my knees and my hips, exercises for my feet and for my hands and for my shoulders. So I know what to do when I’m in pain.
Okay. And do they work those exercises?
Fair enough. Can you describe what you do?
Sometimes I do backwards bananas, which...
Yes, that sounds difficult to describe.
Yeah, you lay on your side and then you have to bend your legs back, so you look like a banana, like a curved banana, and then you have to raise your leg up, hold it there for like five seconds and bring it down. You have to do that thirty times on each side. With like 5lb weights on strapped round your legs, which is difficult.
And you do that at home here?
No I don’t have any weights here, but I still do my exercises, ‘cos I need to buy them but I don’t have any.
Okay and what else do you do exercise wise?
I can do the prayer. Like basically you just put your hands together and you have to straighten out your elbows and your arms. And that’s really difficult ‘cos like under my wrist it really hurts so yeah.
And do you do these when you’re in pain or do you do them every day?
I do them every day to strengthen my muscles and I do them like more when I’m in pain.
Age at interview:
Jazmin is a full-time university student. She is white and black Caribbean.
And do you have exercises which are tailored to you?
It's more like tailored to like where you most get your pain and everything and where the movement is restricted.
But it's not really; I would say that they would be tailored to yourself like you know which ones you just do not like to do I suppose because obviously there's loads of different ways to like, different exercises out there to help you so be like, you can pick and choose with your physiotherapist which ones you would want to do sort of thing. So it can be tailored to yourself in that respect.
Are these exercises things which you do on your own or are these things which you do with your physiotherapist regularly?
Actually you can do it in many ways. Like I usually do it, actually when I was at home I actually like my Mum and Dad would do it with me so it was just you know, sort of like a family thing I suppose just to you know and you know to encourage me to carry on doing it as well and then obviously when I was older and it was PE, I would do them in PE and my friends would come and do them with me sort of like thing just you know, I don't know, not to make you feel alone sort of thing. Just you know and sort of like teach them the way like about it and everything as well. So and then sometimes I would just do them by myself but that, in the mornings obviously.
What's it feel like having other people doing it with you versus doing them by yourself?
I like it when there are people there doing it with me but doing it by myself it doesn't really bother me really because obviously I know I have to do them and everything so yeah.
People didn’t always feel that the exercises worked. For example, David felt the exercises were “too simple” but he found a helpful exercise app on his iPhone made by NASS (National Ankylosing Spondylitis Society). Not everyone did what their physiotherapist asked, even though they thought that the exercises would help them in the long run. People talked about time constraints, energy levels and a lack of motivation. Gemma said her physiotherapist wouldn’t be happy about her skipping the exercises.
If young people with arthritis are feeling well and not in the middle of a flare up they might not need to do “physiotherapy” exercises, but they could do regular activities to keep themselves fit and healthy. This may help with the boredom if they only did physiotherapy when they needed it (e.g. in order to target particular joints when they have restricted movements, or improve recovery after surgery).
Hydrotherapy involves doing special exercises in a warm pool with a physiotherapist. If it’s busy then people may share the pool with other patients. People spoke highly of hydrotherapy and said it was “soothing” and helped relax their joints. Those with more severe arthritis said it was the best way for them to exercise because they didn’t have to put weight or pressure on their joints and they could float around freely in the warm water. Jazmin said it was the only type of exercise that helped during a flare up. Kyrun had used a kickboard (float) during his hydrotherapy. He had to push it under the water with his hands or hold it under the water using his feet. Some people felt “shattered” after hydrotherapy but others felt invigorated and full of energy. Charlotte Y was disappointed because the pool wasn’t open late enough for her to go after school but Jazmin was more than happy having time off school to go.
Charlotte is a student at college studying a BTEC in Forensic Sciences. She is white British.
In the hydropool it’s basically a huge pool that’s heated. So it’s like a massive bath really, a warm bath. So ‘cos it’s warm it’s nice on our joints. And because it’s in the water it takes the impact off and it’s easier to move our joints there. So we just do stretches, or like if I’m having a bad day, like I had a flare up and it was my neck and back were really painful. So she just like she let me in the hydro pool, I just relaxed and then I stretched them out gently and then, then I had a knot in my back which was really painful, she massaged it out for me. And then, yeah we do stretches and just walks and runs and, just to get your like, just to exercise your muscles and stretch them out without it being too much of an impact and hurting too much.
Where do the exercises come from?
Yeah the physio, your physiotherapist is in the pool with you. And she does them with you.
And do you have different people in the pool at the same time doing the same thing?
Sometimes. Not all the time, sometimes.
They do their own thing do they?
Oh they’re doing their own thing with their own physio. It’s just one on one.
Age at interview:
Age at diagnosis:
Ryan lives with his mum and brother and is still at school. He is white British.
So and what do you use this hydro pool for? What does it do?
Like it gets my joints better and more movement in it because I’m doing exercises for it but it’s easier ‘cos it’s in like warm water.
And what kind of exercises do you do? Is it just the swimming?
No stretching my legs and like walking up and down the pool and walking on my knees higher, I usually walk on my heels and that. Getting my legs better.
Did somebody tell you what you’re supposed to do in the pool?
Yeah. There’s like a person, when, before, there’s a physio there that tells me what to do and that, we play like a game but it’s not like a proper game ‘cos like once she put weights on my legs, so I had to jump to try and get the ball and it was like helping my legs. I had to work harder, bend, work more. ‘Cos I normally just jump normally, but I had to bend my legs to jump higher to get it. It was quite fun that time.
And how do you feel afterwards, once you’ve done that?
Tired but more better, ‘cos I can move my legs better and that.
So you’re tired, but you’ve got, you can actually move more afterwards.
You’re not stiff afterwards?
No but the next day I will be after sleeping and that, ‘cos I’m not, I’m lying straight and they, I normally do that every Friday.
Have you ever missed a day?
And what happens if you miss a day?
Like nothing, they just, I phone up like, ‘cos the, like last week I fractured my arm playing football, so I couldn’t go in the Hydro so I haven’t been able to do it.
Okay. And what happens to your body if you don’t go in. Does anything happen? Does it get stiffer or is it the same?
Yeah. A bit stiffer but it’s not really that bad.
The people we spoke to usually had about 6 sessions in the pool then their physiotherapist gave them exercises to do in the hospital or at home. Charlotte Z said the hydrotherapy made her stronger so she could return to the hospital to begin “dry land” physiotherapy.
Not everyone exercised as regularly as they wanted to. Some struggled to work out during a flare up. Lu found flare ups “frustrating” because her hard work training with the swim team and basketball team would be put back. Sometimes people were too busy with school, university, or work. Others simply couldn’t be bothered to exercise – even though they knew that it would help them in the long run. Some didn’t exercise until doctors found the right balance of treatment to take the pain away. Remembering to exercise each day could also be a problem. Tom forgot to exercise when his arthritis was OK and only remembered when his joints hurt. Sarah regretted not doing her exercises because she had restricted movement in her shoulder but felt she could improve by taking up exercising again.
Food and diet
Most experts would agree that eating a well-balanced healthy diet is important for everyone including those with arthritis.
So a healthy diet is good for all us and whether you've got arthritis or not, eating the , a healthy diet is important. There are some things that are particularly good for somebody with arthritis. So the two things that we would suggest if a young person asks me, "Is there anything I should eat?" is calcium containing food-stuff, so your yoghurt, your cheese, your milk etc. Those are good for your bones and the bone strength is very important for young people with arthritis. So sometimes if young people are saying, "Oh I don't eat any milk, any cheese, any this…" sometimes we will put people on some calcium supplements because of that. But ideally taking it in your diet is much better. The other story is fish oils and they have been shown to have some anti-inflammatory action and they're also good for your heart and good for your bones and so if young people want to sort of do something about their diet, those would be the two things that I would say are good. We do get concerned when young people talk, often their parents, about excluding a lot of things from their diets because again it's different from an adult diet. These children and young people are growing and developing and they may need the nutrients of a , you know a balanced diet. So I think in any dietary change needs to be discussed ideally with the rheumatologist or even being referred to the dietician.
Some of the people we spoke to were happy eating and drinking anything they wanted and didn’t feel a need to watch their diet. People who ate what they wanted sometimes exercised to balance things out.
Beth is a school student. She lives with her parents and is White British.
I love my food, I could eat all day. Most of my family loves their food, I love eating like the wrong foods, I eat loads of the wrong foods. And I don’t like fruits and vegetables, but I know that I have to otherwise it won’t be good for me. I do a bit of exercise and keeping fit. I go dancing and other sports, walking my dog around the block which is terrible because he’ll just run, so that’s my running for the day. There’s things on the Wii, I do Wii Fit to keep myself fit. I do different activities and that’s very tiring. So yeah I have got to watch what I eat and what I do but besides that I think I’m okay, so I am for now.
I mean, realistically do you watch what you eat because of your arthritis or do you just kind of eat what you want and let your Mum...?
I love to eat what I want, when my Mum’s not here I’ll just pig out in the cupboards and whatever else I can find, but I am stopping what I’m eating because I know that it’s not good for me and ‘cos of my arthritis and stuff, so like I try to eat more fruit. And I don’t mind fruit, I don’t mind eating it, I don’t mind eating vegetables as well, but I prefer to have the wrong stuff.
But yeah I have got to watch what I eat and stuff, but even if I don’t eat as much good food I do keep fit, so that’s okay for me.
Others felt that eating healthily was important in order to maintain energy levels and to not put on too much weight. They felt that being overweight would put too much pressure on their joints. When people were on steroids their appetite could increase so they often watched what they ate (for more see ‘Steroids’). Dan was on steroids but said the pain of his arthritis put him off eating and he had difficulties putting on weight. Being able to wear nice clothes and feeling confident with how you look was also important to young people. Sometimes people exercised to keep the weight off. Kerrie wishes she could exercise more so she could have more treats.
Elizabeth is a full-time university student. She is white British.
I wouldn’t say that no. I wouldn’t say it’s controlled but I’d just be like, “Well,” you know my Mum cooks for me, or I cook for, I know how to cook, you know I’ve been cooking since I was young thanks to my Mum and I know what’s a good home cooked meal which is you know vegetables and everything, and I know what’s bad for you. So I don’t, I don’t go out to eat that much and if I do it’s with friends, just for a social thing.
And I get a takeaway as a treat but I think you do have to watch it. You do get, when you start steroids I mean on 20 it’s out of control. I’m not saying I’d go and get loads of burgers and chips and just absolute rubbish, but it’s just more like you’re at dinner, you have a plate of normal sized food and you eat it and it feels like you’ve eaten nothing at all. So you’re just like, “Okay I’ll have a second,” you feel that you just, you don’t feel full so you just keep on eating until you try to feel full. And then it could be a perfectly healthy meal but then again it’s crazy unhealthy because of the portion you just eat.
So but that, so you have to be aware of portion control, you just have to be like “Oh maybe just a bit smaller,” but at the end of the day with steroids you don’t want to go to bed starving because then you’ll just be cranky. And sometimes you’d be craving something, but you wouldn’t know what so then you’d just be in a bad mood and you take it out on people. But that’s one of the things that I’m struggling with at the moment, because I’m scared, because I’ve been on steroids so long I’ve kind of, I’ve gone down so low that I’m not putting weight on, but if I go up I’ll put weight on, so it’s just kind of more like trying not to comfort eat, if you know what I mean?
‘Cos you know that’s how obese people you know the, they start to comfort eat and just oh, I can’t, I can’t comfort eat. Don’t comfort eat. Do something else, you know. But it is something especially weight, you have to be aware of weight because weight impacts your arthritis. The lighter you are, I’m not saying you have to be super skinny but it’s much better, and the more muscle you have is better for the joints as well. Yeah.
Sometimes younger people who lived with their parents said their mum and dad did the cooking so they didn’t need to worry about diet, but some young people were taught to cook healthy food from a young age. People who cooked for themselves said they tried to have a balanced diet in order to stop feeling too tired. They avoided snacks and other “quick fixes” that would only give them energy for a short time. Some avoided eating fatty foods like takeaways and controlled their portion sizes. Sometimes this was difficult, particularly if friends wanted to eat fast food. It could be difficult if there was unhealthy junk food in the house. Sabrina made her siblings eat it so she didn’t have to look at it. People also said that eating regularly and not leaving long gaps between meals was an important way to maintain good energy levels.
Some people had tried special diets or took vitamin or Cod Liver supplements to achieve a more balanced diet. People also avoided particular food groups, such as carbohydrates or foods with certain things in like citrus acid, though they never knew if it made a difference to their symptoms. Sometimes people didn’t cut out food but made sure they ate plenty of healthy things like fruit and vegetables. Visit our 'Health and Weight' section for more about young people's experiences of diet and weight.