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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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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.