Children and Young People

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New Children and Young People Booklet

Young people have been diagnosed with fibromyalgia and we have a specific booklet designed for them with information for parents/carers and teaching staff. Please request this from the office, details of which are on the back cover. You can also download Children and Young Persons Booklet (updated19/08/16)

Below is the older version of the information we provided on this topic.


This article has been extracted from the free Information booklet that FMA UK provides. To have this information presented in a professional A5 booklet, as well as the other articles please request one from the office. The material in this booklet is from an older version of the booklet, please check the link above for current content.

The aim of this section is to provide basic information about fibromyalgia in children and suggest some management and coping skills. Parents and other care-givers can assist young people to manage a social life, continue with their education and plan for the future despite this troublesome condition.As with adults, fibromyalgia affects children in different degrees but is not life threatening.

Why Insist on a Diagnosis?
If an illness is not identified, a child may be suspected of laziness, school phobia or of faking an illness to get attention. As a parent you may be accused of keeping your child away from school without good reason.You know better than anyone else if your child is faking an illness. A child that is too tired to play with friends or eat their favourite food is not faking.

With a diagnosis a parent or other care-giver can counter any such notions.You may have a child who has displayed a confusing combination of symptoms for several months, and it may have been difficult to get a diagnosis. If the main symptoms have been pain, muscle stiffness and fatigue and standard laboratory tests have proved negative, then the diagnosis is likely to be fibromyalgia.

 

 



Diagnosing Fibromyalgia
It can be particularly difficult to diagnose fibromyalgia in a child. One reason is thatsymptoms may be overlooked among the many changes that take place, both mentally and physically, as a child is growing up. Also, a child will oftenover-compensate when slowed down by an illness.

A young child is unlikely to be able to explain how they feel and questions developed especially for the young may be used by the doctor to discover how badly a child is affected.
Teenagers are often easier to diagnose as they are older and more able to describe their symptoms. Fibromyalgia often occurs after a viral illness, but it can be triggered by other factors such as an accident or shock. The doctor will discuss the medical history of the child and will probably carry out a physical examination.

Fibromyalgia is diagnosed the same way as in adults, and has the same collection of associated symptoms as described in the "What is Fibromyalgia document?" As you can see, you are dealing with a very complex condition. Fibromyalgia is not the type of illness that will just run itscourse and fade away in a week or two. Unlike many childhood illnesses, fibromyalgia is a long lasting condition.

At present there is no cure, therefore it must be managed in a way that allows a child to live a full and productive life. With careful consideration of circumstances and team work, this can be achieved.

 

 

 



Treating the Symptoms
Obtaining a diagnosis is probably very welcome as it does provide some of the answers. However, it may also be very disturbing, because you will have learned that the child has to deal with this condition or many years. So how do you help a child live with this condition?

Treatment will be carefully worked out for the individual child, as certain medication may be effective for one child but may make another feel worse. The dosage of medication for a child will be small and should be monitored carefully. To ease pain and promote sleep, anti-depressant drugs are sometimes prescribed, but in doses that are much smaller than those used to treat depression. Where other health problems are evident, a combination of medication may be prescribed.

Always discuss the success or failure of medication with a doctor.Rest is also an effective treatment for chronic pain and fatigue and can help the body use its resources to fight illness. However, too much rest can mean that the body becomes de-conditioned, and even more pain and fatigue can result.

One of the most important aspects of rest is a good sleep pattern. This means establishing a bed-time routine with the same events at the same time each night. For a younger child this could mean a bath, snack, brushing their teeth; a story or a chat, and lights out in the same order every night. For older children the routine may be different, but it should still be the same every night.

Daily exercise is recommended at a level that does not aggravate the symptoms unduly, either at the time or the next day. As fitness improves, the exercise can be increased. Physiotherapy is often used in fibromyalgia to help maintain muscle tone.A physiotherapist can help by teaching both muscle stretching and relaxation techniques, and can also correct bad posture so that back pain does not worsen through fatigue related to posture habits. A very gentle massage can also help to relieve morning pain and stiffness.

 

 

 



Managing the Condition
The two most common errors made by parents and care-givers are panic and over-protection. Common sense isyour strongest ally. A diagnosis of fibromyalgia does not mean life has to stop. It only needs re-arranging. A child troubled with this condition still has to grow and learn and just be a normal child.

Whether symptoms are constant or come and go, occasionally it may be hard for a child to take part in activities that wereonce easy and fun. But the child must be encouraged to carry on with as normal a life as possible.You can help by finding pastimes that can be enjoyed when physical activities are limited. Provide plenty of books, games, crafts and puzzles, and keep plenty of paper, paint and crayons handy for younger children.

For older children encourage craft projects that can be completed over a period of time with no pressure to finish. If concentration is not too much of a problem an older child can benefit from board games and Scrabble. These games can keep the brain active and strengthen problem solving skills.

Travel should not be ruled out as holidays are good fun for everybody – so do not beafraid to travel, but do not be over ambitious in your choice of destination. As with adults, break any journey up so that stretching breaks are taken regularly.

 

 



Education
It may be beneficial to make an appointment with the school to explain the difficulties experienced with the condition. Each school has one person responsible for ensuring children with special needs are catered for and any necessary special arrangements made. Early morning symptoms such as stiffness, pain and fatigue mean that your child may be unable to get ready for school and arrive on time.

It is far better to attend late than non-attendance for the whole day. If your child has a flare up suggest working at home. Teach your child to express physical needs clearly to other care-givers and teachers.

If requests are polite, they will not be regarded as impertinent. You can help with the words to use e.g. “May I have a rest? I am feeling really tired.” Or “May I please finish this tomorrow, as I can’t concentrate today?”

Rest periods during the day can improve stamina. Even ten minutes of rest occasionally, can keep pain and fatigue at manageable levels. You have to make it clear to both the child and the teacher, that such requests are not just excuses and that you will ensure that any missed work is done later. Encourage your child to develop a positive outlook by emphasising ability and not disability.

In exceptional circumstances home tutoring may have to be arranged. Your child’s education is important – take steps to ensure that they can make the most of any support that is available.

 

 

 



Standing back
Your role is to teach the child to live successfully with this condition and to look after themselves. At the same time, you will have to watch that a younger child does not overdo physical activity and end up in bed for a week.

An older child should be allowed to judge what the physical costs are for their various activities. If staying up late, or going to a disco or football match causes more pain and fatigue, they will have to learn to budget their energy, so that they can make progress at school and still have some fun.

If you are the main carer, ask a friend or partner to take over while you spend time with other children in the family. You must avoid other children resenting the time you spend with their brother or sister.

Support
Many support groups exist around the country but, unfortunately, there is no group specifically for children and young people. There will be people in these groups that may have had fibromyalgia since they were children and can relate the strategies they used to cope.

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