Support for Young People with fibromyalgia

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Category: Useful Information
Published on Saturday, 31 May 2025 19:01
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Fibromyalgia

Living with fibromyalgia can be particularly challenging, especially for young individuals. It often affects your ability to spend time with friends and family, and it can significantly impact your education and hobbies. It may feel as though no one truly understands what it's like to live with this condition.

But you’re not alone—we're here to help. We offer a variety of information, resources specifically designed for children and young people. Our Young persons booklet provides help and resources and is aimed at 5 - 16-year-olds. We understand the impact of fibromyalgia on people, and particularly for children and young people. The parents of young people with fibromyalgia also need support so they can be there for their child.  
 

Stephanie: “ I use heat patches on my back especially during the winter. I have found physiotherapy, hydrotherapy and a pain management course helpful. I would recommend the pain management course to anyone as it covers everything. I do take some medicines, painkillers and tablets to help me sleep, but I don’t like taking medicine as a long-term solution.

My best coping strategy is distraction, whether it’s listening to music or talking to family and friends or going out and just getting on with things.”

What is fibro like for young people?

The symptoms are the same as adults, but it can be more difficult to be diagnosed.  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.

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.”

What causes fibro?

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.

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"

How will your doctor know you have fibro?

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 at your local hospital.
 
They will do a general health check, and they may refer you to a paediatric rheumatologist if fibromyalgia is suspected. 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 never recover from. 
 
For this reason doctors may diagnose you with another condition like chronic pain syndrome or something else and if the symptoms carry on into adulthood then a diagnosis of fibromyalgia might be made. 
 

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.
 
Treatments may be offered to reduce the symptoms you are feeling. It is possible to get your life back on track, either with symptoms disappearing or under control.

What can you do?

Work with the health professionals and your caregivers to try what is suggested. You can look at managing your activity levels by pacing what you do. This can result in you doing more, without exhausting your self or increasing your pain levels. 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.

You can read a personal story from Katrina about her challenges of developing chronic pain at age 11 as she was looking to go to secondardy school.

Resources to help during school and university

There are more resources in our booklet but the list below can help youunderstand your rights and obtain support at school or university. Reasonable adjustments like more time for exams or aids such as a voice recorder may be available to you.


 

Support Resources

You can find out more about our helplines and support groups here including any notice due to holidays or closures. 

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