What should you do if your child suffers from chronic pain?
Melisa's (name of affected person changed) pain started at the age of ten: Her knee and hip hurt when she walked. A series of examinations followed and she was given insoles and physiotherapy. But although the supposed causes of the pain were resolved, it became worse and occurred in other parts of her body. «I kept seeing doctors, but no cause was found,» says the now 19-year-old. «At some point, others no longer took the pain seriously.»
For Oona, it all started in summer 2018 with a torn muscle in her right arm. «The injury was actually harmless and healed after a few months,» says the 18-year-old from the canton of St. Gallen. «But the pain got worse and worse over the course of six months and spread to my fingers. Later, I had pain all over my body.»
According to a German study, 31 per cent of schoolchildren between the ages of 10 and 18 experience chronic pain.
She was unable to write with her right hand for a long time. She was diagnosed with Complex Regional Pain Syndrome (CRPS) - pain that is more severe and lasts longer than would be expected due to the tissue damage.
Yael had very severe lower abdominal pain for the first time at the age of 13. She underwent four emergency operations due to haemorrhaging cysts on her ovaries. «Although everything was gynaecologically fine again, I was in constant pain, sometimes more, sometimes less severe - and every fortnight I had a pain crisis where I had to be treated in hospital,» says the now 17-year-old. «When I was about 14, my parents and I realised that I needed professional help for the pain.»
«Children today are often burdened»
Chronic pain in children and adolescents is on the rise. "A German study conducted in 2021 with schoolchildren between the ages of 10 and 18 showed that 31 per cent of them experience chronic pain. 8 per cent suffer from severe pain that significantly affects their everyday lives.
In Switzerland, the figures are probably comparable," says Alice Prchal, Head Psychologist and Co-Head of the Interprofessional Pain Consultation at the University Children's Hospital Zurich. Girls are affected significantly more often than boys. It is not entirely clear where the increase comes from. «There are probably several factors at play,» says Prchal. «Children and adolescents today have to fulfil a wide range of demands and are often under stress as a result.»
Muscle, joint and skeletal pain, back pain, headaches and abdominal pain are most common in children and adolescents.
Eva Bergsträsser, doctor
Chronic pain is defined as pain that persists for at least three months or recurs repeatedly. A distinction is made between two forms: chronic pain with no identifiable organic cause and chronic pain with a physical cause that does not explain the extent of the pain. The pain can be triggered by an accident, an illness or an operation.
«The most common types of pain in children and adolescents are muscle, joint and skeletal pain as well as back pain, headaches and abdominal pain. These types of pain are about equally common,» explains Eva Bergsträsser. She is a colleague of Alice Prchal and head of the palliative care department as well as medical co-head of the pain consultation in Zurich. «Chronic pain becomes more frequent with increasing age and often affects several areas of the body,» says Bergsträsser.
Quality of life is often significantly impaired
The pain often leads to restrictions in everyday life - for example at school, during leisure activities or when playing sport. And it can significantly impair the quality of life of the child and the whole family. In addition, many sufferers also suffer from depression, anxiety disorders or sleep disorders. They can occur as a result of the pain, but can also be present beforehand and exacerbate the pain.
«Because of the pain, I couldn't really take part in school anymore, I met up with friends less and didn't do any sport,» reports Melisa, for example. «And I was often irritable at home, so there were often arguments.»
So what can those affected and their parents do? «First of all, it is important to carefully clarify possible physical causes,» recommends Bergsträsser. «The best place to start is the paediatrician. They can act as a kind of hub and refer you to various specialists or a specialised paediatric pain centre.»
The earlier professional help is sought, the better. This increases the chances that the pain will not become chronic and that no further psychological disorders will occur.
It all starts with a holistic assessment of the situation
There are specialised pain centres in Switzerland in Zurich, Basel, Bern, St. Gallen and Lausanne. Experts from various specialisms work together in these centres to diagnose and treat pain: Doctors, child and adolescent psychotherapists, physiotherapists and social workers.
«This type of multimodal therapy is currently the most effective treatment approach for chronic pain,» says Prchal. Multimodal means that psychological and social aspects that play a role in the development and management of pain are taken into account alongside physical aspects.
As a rule, the pain does not indicate any physical damage. At the same time, they are 100 per cent real.
Alice Prchal, psychologist
«At the first appointment at our outpatient clinic, a doctor and a psychologist hold a detailed discussion with the young person and their parents,» says paediatrician Bergsträsser, explaining the procedure. «We take a close look at the physical findings, record the situation in the family, at school and with peers and ask about other stresses that may be contributing to the pain.»
A key aim of the therapy is to help children and adolescents get back to normal in all areas of life. The therapy can usually be carried out on an outpatient basis, but inpatient therapy is advisable in cases of severe pain and restrictions. «Parents are always involved in the therapy,» says Prchal. «This is because they can actively support their child in coping with the pain.»
Contact points and information
- Interdisziplinäre Schmerzsprechstunde des Universitäts-Kinderspitals beider Basel (erstes spezialisiertes Schmerzzentrum für Kinder und Jugendliche in der Schweiz): www.ukbb.ch
- Interprofessionelle Schmerzsprechstunde des Universitäts-Kinderspitals Zürich: www.kispi.uzh.ch
- Kurzfilm «Den Schmerz verstehen – und was zu tun ist in 10 Minuten!»: www.deutsches-kinderschmerzzentrum.de
- Die 10 wichtigsten Tipps, was Eltern bei chronischen Schmerzen tun können, finden Sie hier.
Psychoeducation is an important component of the therapy: knowledge about the pain is imparted and misconceptions are dispelled.
Prchal: «We make it clear that chronic pain is caused by the interaction of physical, psychological and social factors. We also explain that it does not usually indicate physical damage and has therefore lost its warning function. At the same time, we emphasise that the pain is 100 per cent real - and should therefore be taken seriously by everyone involved.» According to the expert, pain can also be intensified by attention or negative feelings such as anxiety or stress.
The therapy procedure is also derived from this information. «It is very important that the children and young people actively participate in all daily activities again. It can be useful to adjust some requirements slightly, for example to allow breaks at school,» says Bergsträsser. «In this way, the pain often decreases significantly after a while.» It is also important to resume sport and physical activity - this is also encouraged by physiotherapy.
Furthermore, those affected learn strategies for dealing with the pain, such as consciously distracting themselves, relaxing or no longer perceiving the pain as threatening, which can significantly reduce negative feelings.
It is also important to recognise and change stress and stress factors. «If the family is very worried that organic causes may have been overlooked, we also consider together which physical examinations could be useful to gain more certainty,» says Prchal.
Ms Bergsträsser, Ms Prchal, how well are doctors sensitised to chronic pain in children and adolescents?
Eva Bergsträsser: "The picture is rather sobering. A study has shown that only 20 per cent of paediatricians surveyed in Switzerland feel confident in treating chronic pain. Paediatricians and family doctors should therefore be better trained in this area."
How could the situation be improved?
Alice Prchal: "It could be useful to rethink the often high demands at school, for example to reduce time pressure or pressure during exams. But some parents and the young people themselves could also ask themselves whether a particular school career is absolutely necessary, for example."
How could chronic pain be prevented?
Prchal: «It would be important to inform parents, teachers and pupils more about the topic. This could help to ensure that everyone chooses suitable strategies for dealing with pain and that those affected receive appropriate treatment at an early stage.»
A major burden for parents too
Yael came to the Zurich pain clinic at the age of 13 and received intensive support. «In the beginning, the pain didn't improve much and I often felt isolated and hopeless,» she explains, «but over time I managed to go out more, do things with friends and go to summer camps. This has given me more self-confidence again - and the pain has gradually decreased.»
The child's pain can also be very stressful for the parents. She is often irritable, says Oona, and on the other hand, her mother did not always fully understand her illness - which put a strain on their relationship. On the other hand, like Melisa and Yael, she says that her parents have always tried to support her and that they are now important confidants again.
Parents should not focus on the pain and should praise their child for active behaviour and for everything they have achieved.
«My mum wanted me to be well and to be able to do everything,» says Oona. «She encouraged me and kept giving me suggestions about what else I could try for the pain.»
Parents can be a great support in coping with the pain. «However, some mothers and fathers tend to engage in unfavourable behaviour that may be well-intentioned but can exacerbate the pain. For example, they support protective behaviour by letting their child take sick leave at school or taking extra care of them when they are in pain,» says Bergsträsser. Instead, parents should not focus on the pain and praise their child for active behaviour and everything they have achieved.
Often significantly less impaired after therapy
Whether medication should be taken to relieve the pain varies from person to person. «In many cases, they don't help and can do more harm. But there are also patients who benefit from painkillers,» explains Bergsträsser. This can be the case if there is an underlying organic disease such as rheumatism or if the pain is significantly reduced by the medication.
«Overall, however, medication should be used very cautiously for chronic pain,» says the paediatrician. «If the pain doesn't improve or only improves slightly, they should be discontinued.»
And what are the overall chances of success of multimodal therapy? «It depends on the individual, of course,» says Prchal. «Some young children are completely pain-free after therapy. In older children and adolescents, the pain often tends to become «quieter». But what is also important is that many have learnt good strategies to deal with the pain and are significantly less impaired in their lives.»
Just like Melisa, Yael and Oona. Yael changed schools a year ago and is now completing her schooling abroad. «Since then, I've experienced a lot and had a lot of variety - and the pain has also decreased significantly,» she says. For a while, Oona wasn't sure whether she would be able to do a normal A-levels because of the pain. «Now I'm studying veterinary medicine in Zurich and I'm very happy that I've managed it all.» Melisa is now also studying: Chemistry at ETH Zurich. «I have a lot to do there with lectures and labs and don't have any time left for the pain.»
- Pain is chronic if it lasts for at least three months or occurs repeatedly. It can have a physical cause, but it can also have no tangible physical cause.
- According to a German study, 31 per cent of children and adolescents between the ages of 10 and 18 have chronic pain and 8 per cent have severe pain.
- Experts believe that physical, psychological and social aspects influence pain. These include the assessment of the pain, anxiety or stress at school and in the family.
- The most effective therapeutic approach is interdisciplinary, multimodal pain therapy. In addition to physical factors, psychological and social factors are also taken into account. Important aspects are education about the pain, activation and strategies for dealing with the pain.
