A brief guide for parents
Introduction
The aim of this leaflet is to provide basic information about fibromyalgia and suggestions on 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. FMS affects children in different degrees but FMS 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 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 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 that symptoms may be overlooked amongst the many changes that take place, both mentally and physically, as a child is growing up. Also, a child will often over-compensate when slowed down by 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 a 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 lingering thyral illness, but it can be triggered by other factors such as an accident or a shock. The doctor will discuss the medical history of the child and will probably carry out a physical examination.
Fibromyalgia is diagnosed by testing a number of tender points that are found in precise locations on both sides of the body, above and below the waist.
Pain in various sites all over the body will have been experienced for three months or more. This method of diagnosis will help to distinguish fibromyalgia from other conditions, but it does not represent all the effects of the condition.
Pain, fatigue and muscle stiffness are the main symptoms but, at different times, other associated symptoms may occur such as:-
non-restorative sleep - a disorder that makes a person feel more tired on waking than when they went to bed;
irritable bowel syndrome;
headaches
cognitive disturbances including lack of concentration and word mix-up
clumsiness and dizziness
sensitivity to changes in the weather and to noise, bright lights, smoke and other environmental factors
allergies
As you can see, you are dealing with a very complex condition. Fibromyalgia is not the type of illness that will just run its course and fade away in a week or two. Unlike many childhood diseases, fibromyalgia can be a long lasting condition.
At the moment, it has 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, this can be achieved.
Treating the symptoms
Obtaining a diagnosis was probably very welcome as it did provide some of the answers. However, it may also have been very disturbing, because you will have learned that the child may have to deal with this condition for many years. So, how do you help a child to 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 a fatigue and can help the body to use its resources fight illness. However, too much rest can mean that the body becomes deconditioned, and even more pa n and fatigue can be the 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 at the same time 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 posture habits. A very gentle massage can also help to relieve early morning pain and stiffness.
Managing the conditionThe two most common errors made by parents and care-givers are panic and over-protection. Common sense is your strongest ally. A diagnosis of fibromyalgia does not mean life has to stop. It only needs rearranging. 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 were once 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 a younger child. For an older child, encourage craft projects that can be done 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 be afraid to travel, but do not be over ambitious in your choice of destination.
Education
It may be beneficial to make an appointment with the school to explain the difficulties experienced with the condition. Early morning symptoms such as stiffness, pain and fatigue means 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 a whole day. If your child has a flare up, suggest work at home. Teach the child to express physical needs clearly to other caregivers and teachers. If requests are polite, they will not be regarded as impertinent. You can help with the words. For instance, "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 the child to develop a positive outlook by emphasising ability and not disability.
In exceptional circumstances home tutoring may be arranged. Your child's education is important - take steps now, your child's future depends on this.
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 soon learn to budget their energy so that they can make progress at school and still have some fun.
If you are the main care-giver, ask your partner or a friend to take over while you spend some time with any other children in the family. You must avoid other children resenting the time you spend with their brother or sister.
Support
Many adult support groups exist around the country but, unfortunately there is no group for children and young people.

Latest ResearchStudies in America have identified an imbalance in the Central Nervous System (CNS) and altered blood flow to parts of the brain.
It is thought that a deficiency in Serotonin in the CNS is responsible for the loss of restorative sleep and an increase in the levels of Substance P, the latter giving rise to elevated pain messages.