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Arthritis (young people)

Disease progression

Arthritis treatment has improved considerably over the last 10 years and the outlook is positive for people using modern medications such as biological therapies. Sometimes people improve a lot but still have to take medication to stop their arthritis from getting worse again. People can also go into remission (their symptoms go away) and find that they no longer need treatment.

 

Joseph has been in remission for two years. He no longer experiences any symptoms. His biggest...

Joseph has been in remission for two years. He no longer experiences any symptoms. His biggest...

Age at interview: 17
Sex: Male
Age at diagnosis: 7
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My biggest fear is in a way is this point in time. Because it’s been in remission for two years is, “Will it ever go back?” Because there’s always a risk that you’ll relapse and there’s always a risk. Obviously they’re going to start eventually taking me off all my medication that when they do you could relapse. And it’s such a transitional stage anyway with moving away to university next year that the last thing you want is to go into remission again. So I suppose that’s my only worry. But I try to keep positive and look at what I have now and where I was before and just keep positive and hope that everything keeps moving in the right way.
 
What have the doctors said to you?
 
They with it being in remission for two years they say it’s a good chance that it won’t relapse but with it being such a volatile illness there’s always that risk. And they would if it wasn’t for my exams and going away to university start taking me off some of the medication now. But we’re going to wait until I get settled at university and then start cutting back the injections and the other medication that I’m on. And hopefully it should stay in remission but there’s always an element of risk.
 

According to Arthritis Research UK (2015), around 70% of young people with Juvenile Idiopathic Arthritis (JIA) go into remission. This means that around 30% of young people find that their arthritis remains active into adult life. Some young adults with JIA have joint damage that might limit their daily activities and a few may need joint replacements.  Occasionally if arthritis has not been controlled in childhood, or steroids have been used in high doses for many years, people can be physically smaller than average or develop osteoporosis. However, because of modern treatments the majority of people do not experience such problems.

Most of the people we talked to had on-going symptoms. In this section we talk about these symptoms and how they changed over time. Most commonly people described how swelling and pain spread from the first place they had noticed it to other parts of their body.

The number of joints affected by arthritis
The people we spoke to sometimes said that more joints became affected over time. People talked about different areas of the body being affected such as toes, ankles, knees, fingers, wrists, elbows, shoulders, necks, jaws and areas of the spine. Some people said certain joints were affected but others said arthritis affected every joint.  Gemma has pain all over but her knees are worse. Her back and neck have been hurting ever since she had an accident whilst climbing. Jazmin has arthritis in all of her joints but said that her fingers, wrists and ankles hurt the most.

When arthritis extends to another joint it may happen suddenly or be a gradual process that takes months or years. For example, when Dean had a new joint affected it happened “straightaway”. Elly said that her arthritis extended “quite quickly” from her hands to her feet but then “gradually moved everywhere” as she grew up. Lu’s arthritis started in her small joints such as her knuckles, fingers and wrists. Over the next two years she developed problems with her toes, feet, ankles, elbows and knees and shoulders.

 

Tina’s daughter, Lucy, got worse after diagnosis. Her condition declined “overnight”. At the time...

Tina’s daughter, Lucy, got worse after diagnosis. Her condition declined “overnight”. At the time...

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Have things changed then over time?
 
Well I'd say whenever they diagnosed it she probably got worse. It was if she just got worse overnight and she was very stiff and she was very sore and; but she was just being, you know, taking anti-inflammatories for it and she was, you know, it was kind of controlling the pain alright but she was still in pain all the time and it wasn't just one joint, it was probably every joint. It would have been her every single joint but mainly her neck.
 
And her wee hands would have swollen up and I'd be up at night rubbing cream into her feet and even though I suppose I thought maybe she wasn't too bad, she was, it was horrendous and she shouldn't have to suffer like that. You know and probably if I had of realised at the time I would have had her on more, you know, more serious medication at the start so she would have been normal for her age rather than burying my head in the sand and thinking that she's alright, she only needs some Ibuprofen whereas she does, needed more than that.
 
So you were rubbing the cream on her neck and things after the diagnosis?
 
Yes well I would have been rubbing her joints and that before. You know whenever they were sore I would have been doing stuff with them, massaging and that.
 
 

As a child, Elizabeth's knees were affected and she developed iritis. Her arthritis started to...

As a child, Elizabeth's knees were affected and she developed iritis. Her arthritis started to...

Age at interview: 18
Sex: Female
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Probably my earliest memories were probably in primary school, when I started doing PE. I noticed I couldn’t run faster than everyone else. And then noticed that I could easily get out of PE as well by talking to my teachers. I’d just be like, “Ah hurdles don’t want to do that right now.” And they’ll be like “Oh okay.” And go and sit down. Also blood tests. A lot of kids didn’t have to have blood tests and I did, so I didn’t understand that. And then going to my doctors, like once a week, no-one else had to, no-one else came into the classroom late, so I’d be like, “Maybe something’s not quite right here.” But I still didn’t quite understand that. 
 
But, and when I was in primary school it only affected my knees, so I, it was, it was pretty good in primary school, not really any health complications or anything. And then when I was 6 I noticed that in my right eye I had iritis that they diagnosed it with. And my eye became foggy, and you know that, that was a bit weird because it, I started to get a lazy eye, then all the other kids noticed really. Thankfully I never had any problems, I was never bullied or anything throughout all my school, I was never bullied or picked on. But, so that was really good and I had friends. But yeah and then that was okay. 
 
And as soon as I got into secondary school it kind of spread to my ankles. Well not really spread but started to affect my ankles and, and then it affected my elbows, my jaw, my hip and my wrists and my fingers. So I was at, I was just before GCSE’s that I found out that I had to have a hip replacement. So that was, that was a bit daunting and then I was on crutches for a year and a half. And ‘cos I was being referred up into, up to [name of university and name of hospital], so that was, it took me a year and a half to get a hip replacement up there. But I did get a cancellation so I had it done in the summer so it didn’t affect my university, my college work. 
 

Because of new treatments like biologics young people rarely require joint replacements (see ‘DMARDs’ and ‘Biological therapies’).

Different symptoms in different parts of the body
People’s symptoms may also depend on the area affected. Cat said that she gets achy cramps in her ankles, throbbing pain in her shoulder and her neck feels stiff and uncomfortable. Muscle weakness was sometimes talked about too. Physical activity has been proven to be very important in protecting joints affected by arthritis. By improving muscle strength, less strain is put on the joint. An occupational therapist, physiotherapist or nurse specialist can advise on pacing to gradually increase physical activities (see ‘Staying fit and healthy’).

 

Catherine’s arthritis has affected different parts of her body at different times.

Catherine’s arthritis has affected different parts of her body at different times.

Age at interview: 24
Sex: Female
Age at diagnosis: 4
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I think, they sort of switch and change to be honest, like when I was younger it was my, both my knees, ankles, hips, wrists and now as I’ve got older they’ve kind of changed so my knees are still bad and my hips but now it’s sort of; my elbows are quite bad and my neck and back is bad and my ankles and wrists have got a lot better as I’ve got older so, it just, it just sort of changes over time. Like you can go for through years where certain joints will be really bad and then they’ll be a lot better and other joints will start, start hurting then.
 
Is there a different sensation in different parts of your body?
 
I’d say so yes, like my knee, my knees, it’s more like the swellings an issue and that sort of mobility issues where as when I’ve got pains in the hips it, it’s hard to, you can sort of feel like sort of like a grinding feeling and sometimes clicking in your hips and it’s more, it affects your walking but obviously you don’t have the swelling in certain joints like you do, like your knees is the main one for swelling and elbows.
 
OK. Is it unpleasant when you’ve got the grinding, is it, is it a sharp pain?
 
Yeah, my hip, the hip pain’s quite bad, it’s a sharp pain and obviously walking round a lot which I do in my job, that’s when I start getting the pain and it’s quite, sometimes can be quite unbearable really.
 

Describing pain and other symptoms
People sometimes used graphic language to describe how the pain got worse. Kyrun said to imagine what it feels like to rub their knuckles against a cheese grater until they hit the bone. Catherine said that she gets a painful “grinding” sensation when she walks. Chantelle said it feels like “tooth freeze” in her joints. Creaking or clicking feelings were also common.

 

When Zoe walks up the stairs her knees creak and hurt. They sometimes burn. She says they feel...

When Zoe walks up the stairs her knees creak and hurt. They sometimes burn. She says they feel...

Age at interview: 15
Sex: Female
Age at diagnosis: 11
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With my knees, arthritis, I just remember reading when I was little something about Roald Dahl, which has stuck to me, his daughter quoted saying that every time he came up to read her a bedtime story and his knees were creaking louder than the stairs. Which just reminds me of me when I’m going up the stairs. I hate stairs. I really do. I don’t want to go through and it feels like they’re creaking and it feels like it’s almost a machine that needs to be oiled but it can’t really, to be honest. You can feel it creaking and you can feel the pain and it’s just like, “Oh, it’s so weird.” But it I don’t tend to get hot or cold in my joints or round my joints. I’m just a weird case but yeah, it’s creaky. It can it can burn sometimes, I suppose or sometimes if they get really cold it will literally just freeze and lock and I won’t be able to move them or I’ll have to like slowly ease, which would hurt them a lot or stuff like that really. It’s quite hard I suppose.

Several people said that they lived with the pain so long they have got used to it. People reported stiffness, aches and swelling in different parts of the body – and they could not always be sure which parts of the body would be affected each time.  Zoe’s joints get “squishy” when there is a build-up fluid in them. People also mentioned that their joints would be hot to touch during a flare up. Deni said that her joints become “boiling hot” like “hot irons” or “hot coals”. Treatment aims to reduce the number of flares people have. If you are experiencing frequent flares (hot, swollen stiff joints) you should discuss this with your rheumatology team. They can advise you on how to relieve the symptoms of a flare for short periods, or your medication may need to be adjusted.

Symptoms that come and go 
People talked about various times they noticed when their symptoms got better or worse. They talked about their symptoms getting worse in cold and damp weather, early in the morning, or during times of emotional stress. Ruth said that her joints felt “a little better” during her period and wondered if this might be for the same kind of hormonal reasons that makes some people feel better when they are pregnant. Zoe only got flare ups if she did “excessive stuff”. Cat always felt pain in her wrists but the rest of her joints are “unpredictable”. Sonia woke up with stiffness in the morning but by lunch time it wore away. Sometimes people ask their doctors for steroid injections during a flare up. This helps the swelling go down and relieves the pain.

 

A paediatric rheumatologist explains that young people with arthritis can have good spells and...

A paediatric rheumatologist explains that young people with arthritis can have good spells and...

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One of the challenges in arthritis I think for both the young person as well as for people involved in their care, whether it be a school teacher or a health professional or whatever, is that arthritis is characterised by good spells and bad spells in most cases, and young people will go through what we call remission or good spells and then relapse and that changing course can be difficult. From the outside I'll think, 'Well she was OK yesterday, what's wrong with her today?' and not understanding that yes arthritis can relapse like that. Even in the course of a day the arthritis symptoms are usually classically worse in the morning; improve as the day goes on. So maybe terrible in first class of maths and yet be fine by two o'clock and then the interpretation sometimes is that they're putting it on, whereas that's the classic – history of morning stiffness and , in joints and things, easing as the day goes on. Whereas mechanical pains are more pain due to a damaged joint or, and things can sometimes be worse at the end of the day. So again doctors and nurses will take that history of pain – when things are worse, when things are better and then this, the relapses, after long periods of remission. From a young person's point of view that can be very difficult because the disappointing fact or the impact of that relapse can be quite challenging from an emotional point of view and particularly if they've been well for two or three years and then all of a sudden it comes back with a vengeance but unfortunately that is the characteristics of these types of arthritis.

 

 

Caitriona’s arthritis is better when it is warm and dry. She knows when it is going to rain...

Caitriona’s arthritis is better when it is warm and dry. She knows when it is going to rain...

Age at interview: 19
Sex: Female
Age at diagnosis: 13
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I was wondering whether or not you were actually affected by heat in any way?
 
Yes I haven't been able to run in seven years since I've been diagnosed and I went on holiday to Cyprus a few years ago and for the first time in a long time I was able to run. I took my Mum and Dad by complete surprise, they couldn't believe it and, well people ask me, you know, like old people can you tell the weather through your joints? I have to say yeah, when it's going to rain I feel it. Again you've got that kind of growing pain, that feeling within your joints and it just kind of starts throbbing a bit and I can say, "Oh need a coat, it's going to rain," and when it is cold it does have, it does, some people can't distinguish and that's people who are newly diagnosed, they can't really distinguish the pains or can't tell the difference on what's affecting them at what point and there are still some kind of times where I can't distinguish, "oh no what's this, what's this? Am I just sore? Am I sore for reason?" But when it comes to the weather because that's what had it for a while now, I'm able to tell, you know, if it's going to rain or if that's why I'm sore and prepare myself for the, an extra painkiller.
 
 

Joseph has a flare up when he has done something physical, like walking to the shops. He does not...

Joseph has a flare up when he has done something physical, like walking to the shops. He does not...

Age at interview: 17
Sex: Male
Age at diagnosis: 7
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And tell me about how the pain, where sort of episodes of pain just sort of flares and then?
 
Yeah. It was flares and I could do something and say just walk to the shop and the next day I’d be in absolute agony. I was determined to do it but the next day I’d be in agony or I could just wake up and have really. My, my legs could be really stiff and I couldn’t be able, you know, walk even down the stairs. I can remember my back once when I was walking home just locked and I had to, you know, just sit down and get the bus and just. You know it was weird how it just, you know one day you can be fine, the next day you can have really, have a flare up. And it was really like that until I was in full remission like I am at the moment. 

So for how long did the pain last?
 
It could last for a day, it could last for a week. Seemed endless. It was so volatile.

And which part of the body?
 
It was mainly my ankles and knees. So it’s probably the worst area to get pain ‘cause you’re on your feet all day at school and you’re walking around all day. And you just want to sit down but you can’t.
 

Fatigue
Lacking energy or feeling extreme tiredness (fatigue) is a common issue for people with arthritis. Some of the people we spoke to struggled with fatigue as they got older. Zoe said that in the mornings her legs feel heavy like they were “welded” to the bed (see ‘Fatigue,energy levels, and sleep’).

 

Cat suffers from fatigue every day. Other people have a hard time understanding how tired she...

Cat suffers from fatigue every day. Other people have a hard time understanding how tired she...

Age at interview: 24
Sex: Female
Age at diagnosis: 14
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The main thing that I suffer with on a daily basis is fatigue which is a thing that I think people really find difficult to understand because if I tell someone I'm in pain they kind of accept it but if I tell someone I'm tired they just think, 'I'm what? I'm tired too.' But when somebody else says they're tired it's almost certainly not what I'm feeling because I have a massive lack of energy sometimes to the point where I probably don't have dinner at least twice a week because I just don't have the energy to even put something in the oven let alone actually cook something from scratch. And if I'm on placement or working all day then I just, I come home and I can't do anything because I've just got no energy left at all. So that's probably the main symptom that I suffer with and that's less easy to treat as well. When I get a flare up of the disease then I get more poorly so more pain, more tiredness and lack of appetite, weight loss. The best way I can describe it is imagine that you've got flu and because you've got flu your immune system is trying to fight off the virus so it’s, because your immune system's overactive it's making you feel tired, you haven't got any appetite, you just feel achy all over and that's what my immune system's like all the time because my immune system's overactive in the disease and that's the best way I can describe it I think.

Permanent damage
We spoke to a few people with severe forms of arthritis who didn’t have access to the latest treatments growing up. These people were in their late teens and early 20s. They talked about how arthritis caused permanent damage.

 

Jazmin has arthritis in her wrist and cannot move it as much as she used to. X-rays show that her...

Jazmin has arthritis in her wrist and cannot move it as much as she used to. X-rays show that her...

Age at interview: 20
Sex: Female
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My knees, ankles, toes, fingers, elbows, wrists, hips but the one where my arthritis is more like prevalent is in my wrist, in my right hand wrist. Like I have actually 75% usage of this wrist. That's because obviously the medicine and everything, they couldn't get to, you know, couldn't stop the arthritis attacking it so I've, yeah. If you ever say my x-ray you can actually see the bones are deformed compared to the left hand ones but yeah so I have limited usage of it and mainly my ankles it affects as well. So it's like in most of my joints but in more areas it like has more of a presence like say. Yeah so it's my wrists, mainly fingers and my ankles hurt more prior to being inflamed but it hasn't happened for a long time now really. 

Dan said his hands are “curling” and he struggles to swallow big things because he has restricted neck movement. Melissa’s hips feel stuck in one position. People also discussed how their cartilage had worn away over time and caused joint damage. Some people had bones rubbing together and this caused lots of pain. Doctors may recommend surgery to replace joints if this gets very bad, or put caps on the end of bones which have worn away. Having surgery can help with the pain (see ‘Surgery’).

 

Cat said her hip replacement completely changed her life. Without it she would have been in a...

Cat said her hip replacement completely changed her life. Without it she would have been in a...

Age at interview: 24
Sex: Female
Age at diagnosis: 14
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I think it's just the arthritis that caused it, joint erosion but actually having read about avascular necrosis not long after I'd had my hip replacement it did make me think maybe actually it was caused by that because, OK but no-one ever, nobody had ever mentioned that to me before so I presume that it was just caused by, damaged by the disease itself. I was twenty when I had my hip replaced and it was about a year before then. Because I'm in pain every day I actually am not normally the first person to notice when I get pain. So it was actually somebody else at work that pointed out that I was limping and I hadn't even noticed before. But then I realised, oh I think my hip's hurting but I just assumed it was normal arthritis pain and then next time I saw my rheumatologist it was actually, I just mentioned it pretty much as I was leaving. It was a sort of an afterthought like, "Oh by the way my hip's been hurting." 
 
So he did a quick examination and this was before I was a medical student so I didn't realise what he was doing at the time but he was testing the range of movement and he obviously realised that it was very reduced because he sent me for an x-ray straight away. It was obvious that he was worried and he called me later that day and said, "It's not good news." He referred me to a hip specialist and when I saw the hip specialist he told me that before he met me having just seen my x-ray he didn't expect me to be able to walk into that room. He thought I'd be in a wheelchair because the amount of damage that was done to that joint, there was no cartilage left which is the, the kind of cushiony bit between your joint that helps it to move but not only that because it was bone rubbing on bone that my bone had actually started to erode. So obviously that's not, it doesn't go well with a moving joint. When I had the operation I don’t actually remember this, I must have been really drugged up but I was told afterwards that the registrar had come to see me and said that it was one of the worst hips he'd ever seen so …
 
Wow
 
Yeah I would have liked to have been the worst, I'm quite competitive. One of the worst you know so I had that done when I was twenty which is four years ago now and so far so good.
 
Has there been improvement in your movement?
 
In my hip?
 
Yeah
 
Oh completely, it completely transformed my life. I mean by the time, I was told I needed a hip replacement in the April of that year and there's a twelve week waiting list but the date I was given my operation coincided with my first day of uni so I decided not to have it done because I didn't want to miss, I would have had to miss six weeks of Uni which would have included Fresher's Week, all the settling in, everything that's really important about going to uni. I wouldn't have wanted to start when everybody else already knew other and made friends so I decided not to have it done so it got done at Christmas instead and that first term at uni I might as well not have been there because I was sleeping fifteen hours a day, I was in so much pain, I was so drugged up on tramadol which is the painkiller down from morphine so it's the one below. 
 
I was drugged up on that which spaces you out, makes you sick, like it just…I just wasn't myself at all. Couldn't really go out because of the pain, had to use crutches a lot. If I did go out I was just exhausted. I just wasn't myself and then after I came back after Christmas or eight weeks after the operation everyone said I was like a new person because I was back to my old self again but obviously the people at Uni had never seen my old self before then. But I was back to my

Physical support
When the arthritis is very bad people may need to rely on parents for help or need crutches or wheelchairs to get around. Marie talked about her son Ryan being in too much pain to cut up his food, hold his glass or get out of bed. At one point he had a home tutor but became well enough to return to school when doctors put him on the drug tocilizumab (see ‘School, college and university’ and ‘Biological therapies’). When Jazmin was stiff her mum used to help her dress. Jessica and Kyrun spent years using wheelchairs because of pain. This changed when they had hip replacements and doctors found medication that helped control the arthritis. Both of them can now walk around (see ‘Surgery’).
 
Uveitis
Elizabeth and Elly developed uveitis (inflammation of part of the eye). Uveitis most commonly develops in children with less than 4 joints affected by arthritis. There are no symptoms at first, so regular screening by an ophthalmologist (eye specialist) up until the age of 11 years is very important. Uveitis can develop even when the child’s joints are fine and well controlled.
 
Symptoms improving and remission
Some of the people we talked to described how their symptoms improved with medication (see ‘Painkillers and NSAIDs’, ‘DMARDs’, ‘Biological therapies’, ‘Steroids’). Others talked about the ways in which surgery made a difference by reducing pain and making people more mobile (See ‘Surgery’). Remaining active and eating healthy was also very important (see ‘Staying fit and healthy’). So was getting enough rest and pacing yourself (see ‘Fatigue, energy levels, and sleep’). 

 

A paediatric rheumatologist talks about remission.

A paediatric rheumatologist talks about remission.

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One of the, again differences between adult arthritis and juvenile arthritis is the long term outlook. So if get adult rheumatoid arthritis that, you have that for the rest of your life. Whereas if you have juvenile idiopathic arthritis there is a chance that it may go into long term remission into adulthood and so you won't have ongoing inflammation into adulthood. Now that will vary according to the type of arthritis that you get but it… depending on the range, but you usually between sort of thirty to fifty percent of young people it'll go into long term remission, but remembering then that leaves between fifty and seventy percent that don't and have ongoing and the important things from a young person, a point of view I think is to realise that it can go away but it also can come back and that if they get symptoms even its seven years down the line since the last, to seek help promptly so that you can get something done about it and to say, you know to know that they've had juvenile arthritis as a child and, you know has it come back.

 

Last reviewed November 2018.

 

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