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Information for Parents

This is part of our larger Young People and Fibromyalgia booklet. This section is aimed at parents of those with fibromyalgia. All our publications can be found here.

Information for parents

Some parents have found themselves in difficult situations, with suggestions that they are encouraging their children to be sick or projecting their own symptoms onto them. If you suspect fibromyalgia it is prudent to do your own research, so that you can ask the right questions and request a referral. If you are concerned or feel you are being dismissed, remain cool, calm and assertive while requesting a referral to a community paediatrician.

It is not uncommon to have visited consultants in various departments before arriving at a diagnosis, as different symptomsare often diagnosed individually. 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 notrecover 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.

Activity management

Young people should be encouraged to be as active as possible while maintaining their symptoms to a level they can cope with. This level of activity will differ from person to person and is important not to hold your child back if they wish to attempt new levels of activity. This can be difficult from a parents’ point of view as you don’t want to see your child in more pain, but it is essential that the child learns their own boundaries and what level of activity they can comfortably sustain before causing a flare up of symptoms. A flare is not something to be afraid of it is something to be learned from. In this way the child will learn to pace themselves through the day, which is one of the key management skills to coping successfully.

Communication

Talk to your child and don’t withhold any diagnosis from them. Explain the reasons given for their symptoms simply and clearly and what treatment can be offered to improve the quality of their life. Often it can be liberating to know that the symptoms are not their fault, there is a reason for them and something can be done.

Coping with any kind of illness, especially involving a child, can cause emotions to run high. When it comes to expressing feelings some children talk about how they feel almost incessantly whereas others withdraw into themselves and do not want to talk. As a parent, you know your child and can judge how best to approach the situation to encourage your child to talk constructively about how they feel. Jackie found communication difficult because her daughter did not want to acknowledge the diagnosis of fibromyalgia. Denial is a typical first reaction and often associated with withdrawal. Jackie approached the situation by treating her daughter as normally as possible, asking how she felt but not making a fuss.

Try to keep family life going as normally as possible. The temptation is to protect your child from any further pain, especially if the response from the medical profession has not been sympathetic. While it is important that your child feels supported and believed, being overprotective can be counter-productive. Kirsty found that her daughter wouldn’t tell her when she was in pain because she thought her mother would stop her engaging in the activities she wanted to do. Children can be quite resilient and it is important to be led by them as to what they can and can’t do. As discussed previously children need to discover their own boundaries and learn to pace themselves, which will involve flare ups along the way. Allow your child to be as independent as possible with you there as a backup support when they need it. Try not to constantly ask how they are feeling, but be prepared to listen when they need to talk.

It is also important for you as a parent to have somebody outside of the situation to talk to and to offer you support when you need it. You could find yourself dealing with all kinds of emotions like guilt, the desire to protect, anger and frustration. You need to express and deal with these emotions in order to be in the best position to support your child. Do not be afraid to seek help from a support group or a medical professional.

Communication between parents is particularly essential if you are separated. Children often comment that the parent they do not live with doesn’t understand because they don’t see them living from day to day with the pain and fatigue. As you know the symptoms of fibromyalgia are invisible and can undulate over time, so if you’re only seeing the child at weekends the symptoms could vary quite dramatically and come across as quite mysterious. Try to ensure that your partner has as much information as possible and a clear picture of the current situation.

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