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Young People and Fibromyalgia

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Category: Information Booklets

Published on Tuesday, 13 May 2008 23:37

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This is part of our larger Young People and Fibromyalgia booklet. This section is aimed at young people and understanding fibromyalgia. All our publications can be found here.

What is fibromyalgia (fi-bro-my-al-gia)? Fibromyalgia is a chronic (long term) pain condition. The pain is mainly felt in your muscles and tendons. It feels like you are sore all over, as if you have run a marathon the day before or you have the flu. Your limbs ache and sometimes feel too heavy to move easily. You can also feel very tired and have difficulty sleeping at night. Your head can become muzzy making it difficult to think clearly and remember things. Symptoms can come and go over time and vary from person to person. Sometimes it feels like the pain is moving around your body from one area to another.

Main symptoms:

• widespread pain throughout the body

• disturbed sleep

• always feeling tired

Other common symptoms:

• morning stiffness

• pain when you exert yourself

• headaches

• difficulty concentrating (fibrofog)

• light-headedness

• feeling worried

• being bothered by chemicals, light, sound, smells, noise

• numbness and tingling

• irritable bowel syndrome (IBS)

• irritable bladder

• cold sensitivity

• restless legs

What causes fibromyalgia?

The exact cause of fibromyalgia is still unknown. However, people with fibromyalgia feel a lot more pain than other people. This is because pain signals in fibromyalgia are amplified. It is as though someone has turned the switch to full volume. So the nervous system, that carries pain signals up the spinal cord to the brain, is constantly set on maximum. Pain or touch, that would not bother other people, becomes painful and troublesome to a person with fibromyalgia. It is like being as sensitive as the princess in the fairy tale The Princess and the Pea who could feel a hard pea concealed under many mattresses.

This sensitivity of the nervous system can then affect other areas of the body. It can make the bowel or bladder sensitive leading to irritable bladder or irritable bowel syndrome. It can keep the body on maximum alert, as though you are living in a cage with danger and can’t escape. This can make it difficult to fall asleep and stay asleep. It uses up a lot of energy leaving you feeling tired and anxious.

Also, the body’s natural ways of reducing pain and making us less sensitive are not working properly. These rely on chemicals such as serotonin and dopamine, which are lower than normal in people with fibromyalgia.

Who gets fibromyalgia?

Anyone can develop fibromyalgia although it is far more common in girls than in boys. It is often triggered by an infection, an accident or intense stress, which kick starts the process leading to the symptoms of fibromyalgia. Often young people develop fibromyalgia as teenagers.

Doctors think that the differences in our genes and the environment that we live in can make some people more likely to develop fibromyalgia than others. Sometimes, fibromyalgia can be seen to run in families, which supports this idea.

How will my doctor know I have fibromyalgia?

The first port of call is always your GP. GPs should follow what they do for any childhood condition, treat it as a general thing at first and then if it doesn’t clear up refer you on to a community paediatrician (pee-dee at-ri-tion child specialist) at your local hospital. It can be frustrating if you feel your GP is not responding and has little knowledge of fibromyalgia. However, your GP may not have a detailed knowledge, as their job is to identify that there is a problem and to refer on to a specialist. GPs see a wide range of children, the majority of whom, despite having aches and pains, do not have fibromyalgia. In fact, a GP could expect to come across only one or two children with fibromyalgia in their whole career.

The community paediatrician at your local hospital will do a general overall health check. If fibromyalgia is suspected then you can be referred for a further check or for treatment.

Fibromyalgia is usually diagnosed by a paediatric (pee-dee-at-ric) rheumatologist (roo-ma-tol-o-gist). The doctor will look at your medical history and listen to your account of your symptoms. Then the doctor may make a physical examination. Certain areas of your body are pressed to see if they are particularly tender. These tender areas are called tender points. These areas need to be found above and below your waist and on both sides of your body. If there are at least five tender points (11 in adults), then the doctor will consider a diagnosis of fibromyalgia. Before giving a diagnosis it is important that he/she rules out other conditions which may be causing your symptoms, like juvenile arthritis, lupus or connective tissue disease.

Some doctors are cautious about labelling a young person with fibromyalgia. This is because many young people can get better and doctors do not want a young person to see themselves as having an adult condition they may not recover from. For this reason doctors tend to use terms like diffuse idiopathic pain syndrome (DIPS), soft tissue rheumatism or chronic pain syndrome instead. If the symptoms carry on into adulthood then a diagnosis of fibromyalgia might be made at a later date.

Doctors don’t always explain things clearly so don’t be afraid to ask the doctor questions. It is a good idea to write down any questions you have before your appointment so that you remember to ask them.

Will I get better?

Young people can get better over time. Young people have a better chance of recovery than adults with fibromyalgia. This is because young people are still growing, so their nervous system is changing and developing all the time. Some young people still have grumbling symptoms beneath the surface which may flare at a later date, or may disappear altogether. At the moment there are no scientific studies that have followed children with fibromyalgia closely over long periods of time.

What treatment is there?

Treatment is aimed at reducing the pain and other symptoms so that you can regain the best quality of life possible. It is possible to get life successfully back on track, either with symptoms disappearing or with them well under control. The most successful form of treatment involves a group of specialists working together to teach both you and your parents how to manage your symptoms and your daily activities. It is essential that both you and your parents become active members of the team and work together with the specialists.

The team of specialists usually includes:

PAEDIATRIC RHEUMATOLOGIST OR PAIN SPECIALIST

The rheumatologist or pain specialist may prescribe you medication to help you manage your symptoms. Doctors tend to be cautious about giving medication to young people. However, your doctor may decide that you need help coping with certain symptoms like pain or getting to sleep. The most common medications used for treating fibromyalgia work to reduce pain, relax muscles and encourage sleep. One type of these medications is called tricyclic antidepressants. This doesn’t mean your doctor thinks you have depression. These only treat depression at high doses. At low doses they simply reduce pain and encourage sleep. You may experience side-effects like a dry mouth, morning sleepiness or dizziness with these drugs. However, these side effects should get less or disappear after several weeks.

It is possible that you may develop depression due to living with chronic pain, but this will need to be tackled separately

PHYSIOTHERAPIST (FIZZ-I-O-THAIR-RAP-IST)

A physiotherapist will work with you to set out an exercise programme including stretching, strengthening and aerobic exercise. At first, exercise can seem like the last thing you want to do when you are in pain. However, it is very important because muscles that are not exercised become stiff, weak and tight, which then causes more pain. Stretching will stop your muscles tightening up and becoming shorter. Strengthening will keep your muscles strong. Aerobic exercise, like walking or cycling, will keep your lungs and heart healthy. It is important to start slowly and gradually increase over time, working at a pace that is right for you.

PSYCHOLOGIST (SI-COL-O-GIST)

Anyone coping with pain needs to learn coping skills and how to deal with emotional issues straight away and effectively. Having a psychologist involved in your treatment does not mean that the doctor thinks that your symptoms are all in your head or are simply due to stress. A psychologist is there to teach you and your parents about fibromyalgia and ways that you can manage the pain and fatigue. Often they use a therapy called cognitive behavioural therapy (CBT). This looks at how your thoughts, feelings and actions go together, and how your thoughts and emotions can be barriers to what you want to do. It is learning about those barriers, facing the challenges they present and tackling the fear you may feel. It is also learning to be creative in the way you think, being flexible and doing things differently, problem-solving and developing good communication skills.

Activity management

Learning to pace your activity so that you can keep going throughout the day without increasing your levels of pain or making yourself exhausted is very important. It can be quite a difficult thing to learn as the level of activity one person can cope with may be quite different to what another person can cope with. You basically have to work out your own boundaries and experiment with how much activity you can do before causing your symptoms to flare up. Remember that a flare up is not something to be afraid of, it is something to be learned from. Sometimes, parents will worry and not want you to try out new activities because they don’t want you to be in more pain, which is perfectly understandable. But if you think you can do something it is important to give it a go as in this way you will learn what you are capable of and how much activity you can comfortably do in a day. If you are trying a new activity start by doing it for a few minutes the first time and see what happens, then gradually increase the amount of time.

Where will I go for treatment?

Most often, you will receive treatment at your local hospital where the paediatric rheumatologist, physiotherapist and psychologist are based. Sometimes though, if you live in a rural area, for example, your local hospital may not be able to offer suitable treatment. You may be referred to a residential pain management programme at a specialist hospital to receive intensive treatment. You and one of your parents will stay there for a period of time. Two hospitals in the UK which offer excellent residential programmes for young people are Great Ormond Street Hospital and the Royal National Rheumatology Hospital in Bath.

Stephanie: “Fibromyalgia can make school very difficult. Fibromyalgia affects my hands so I cannot grip a pencil which means I have to have a computer to type up my notes. I dictated my exams, but it made me feel uncomfortable as I was dictating to a teacher. My teachers are very understanding. They have moved their classes around to accommodate me as I cannot manage the stairs or walk for a long time. There is a department at college called ‘learning support’ who help me a lot. They send me work home if I am too ill to come into school.” 

Reuben: “I find a thermal heat pad and an infrasound vibrator the most effective treatment. I also take vitamin supplements and herbal remedies. I haven’t found medication or alternative therapies very useful.” 

Carla: “I use heat. I have a hot bath or use a hot water bottle. I do have certain people I can talk to about my fibromyalgia, which helps. I also write poetry about how I feel.”

Holly: “I take amitriptyline at night to relax my muscles while I sleep and I think it improves the quality of my sleep. I also find trigger point massage and the Bowen Technique useful but they are not available on the NHS. I can’t afford them on a long-term basis. I also wear an air ionizer on a cord around my neck when I leave the house as I am very sensitive to chemicals and smoke.”

Good communication

Talking to your friends and family about how you are feeling can sometimes be quite difficult. The problem with pain and tiredness is that you can’t see them, so other people don’t always realise that they are there. Often with fibromyalgia you look really healthy and some people think that if you look okay you must feel alright. School friends can think you’re faking it to get out of classes, especially when your symptoms keep changing, which makes no sense to them in their experience.

Try to explain to your friends the different symptoms that you have and how they make you feel. Tell them that your symptoms can change from day to day, so sometimes you can do things and at other times you can’t. You may have to cancel arrangements to meet up at a moment’s notice and you find that as annoying as they do. If your friends have no experience of pain then it can be difficult for them to understand and that can be frustrating for you. Try to be patient and be ready to explain if they ask you questions. In the end though, if they are your real friends, they should be supportive of you and be ready to try to understand.

Asking for help when you need it can also be hard. Everybody wants to be independent and nobody likes asking for help but sometimes you don’t have a choice. It shows courage and maturity when you can recognise that you need help and you are prepared to ask for it. Often other people are all too ready to help, but they won’t be able to guess when you need it, and they won’t want to keep asking you. It is up to you. Don’t be afraid to ask.

Parents can react in different ways. Make sure you talk to both your parents. They can also find your symptoms as mysterious and confusing as other people, and sometimes are not sure how to react. Holly’s parents felt guilty that they could not fix the situation and take the pain away. Julia’s parents wanted to be supportive but struggled to understand how she was feeling and what she was going through. Parents want to help but they don’t always know how. It is vital to keep the lines of communication open and be prepared to talk about how you’re feeling and how they are feeling. If you think they are being overprotective, explain to them that you need to find your own boundaries and work at it together. Work out solutions that will make family life easier and explain to them the best ways they could help you to cope.

Sometimes it can really help to chat to another young person who has fibromyalgia or another form of chronic pain. There are forums available on the Internet, like the FMA UK forum, where you can chat to other people in a similar situation and share how you really feel and the problems you are facing.

Coping at school or college

School/college can present all sorts of problems. You may get stiff and sore sitting in class, find it difficult to concentrate, struggle to carry your books from class to class or simply find the whole day too exhausting. Staying in school is the best option to keep you on track with your education and in contact with all your friends. You will need to look at some practical solutions to make the school day easier for you. The first step is for you and your parents to discuss the problems you are facing with your teacher. It is important that your teacher understands what you are coping with and how they can help you. It may be useful to provide them with some information on fibromyalgia or a letter from your doctor to explain your symptoms and the help you may need in more detail.

Click here for Information for Teaching Staff. This is in the second part of our Young People and Fibromyalgia booklet.