Chronic pain in children, teenagers poorly understood and needs to be taken seriously

SINGAPORE — Eighteen-year-old NurAaliyah Syakirah was around 10 years old when chronic pain took over the remaining days of her childhood.

The teenager has spent about half of her young life battling intense, nausea-inducing chronic headaches.

Describing the unrelenting pain, Aaliyah said that it would feel like her head “was being pounded by heavy weights”.

Despite repeated visits to doctors, there were no good answers for her symptoms. More often than not, her headaches were dismissed as “stress” or an excuse to skip school.

She pushed herself to go to school despite having very severe headaches. Her reason was because she did not want to miss school and let her parents down.

Yet, for some of the times she did that, she ended up passing out in school and had to be taken to the emergency department of a hospital.

Help finally came when in 2017, she was referred to the Children’s Pain Management Clinic of KK Women’s and Children's Hospital (KKH), where she was assessed to have chronic pain.

By then, the headaches had gotten so out of control that Aaliyah could barely function. On some days, she was unable to get out of bed, sit up, eat or shower on her own. 

Her mother had to quit her job as a Deliveroo rider to care for her around the time Aaliyah was diagnosed and was unable to cope with the extreme symptoms. The girl’s parents have a history of migraines but their symptoms are not as severe.

Constantly being in pain often left Aaliyah feeling sad and isolated.

“I feel like I’ve missed a lot of important things in my life. My secondary school years were just a fraction of what I could have enjoyed. And the rest of it — I was just at home, in pain.”

WHAT KKH CLINIC IS SEEING

Aaliyah is among the growing number of children and teenagers referred to the Children’s Pain Management Clinic at KKH to manage complex chronic pain.

There are various types of chronic pain disorders, all of which can severely disrupt a child’s life and their families’.

Dr Angela Yeo, clinical director of the Children’s Pain Service at KKH, which consists of inpatient and outpatient services, said that chronic pain is broadly defined as pain that persists beyond the time it takes for normal tissue healing, which is about three months.

“It is not as straightforward as that, though. While chronic pain in itself is not life-threatening, it is truly quite disruptive and life-changing,” she said.

“I know of a patient who confined herself at home due to leg pain. Some struggle through their daily life with headaches.

“Some children who see me have had to delay their studies, with some having to radically change the trajectories of their lives.”

Dr Yeo, who is also a senior consultant with the hospital’s department of paediatric anaesthesia, said that for example, children who entered secondary school via the Direct School Admission programme had to drop out of the school after chronic pain came on suddenly, because they could not continue with the activity that got them into the school in the first place.

Some may have to delay their studies by a year or more, or even transfer from Express stream to Normal stream.  

The Children’s Pain Management Clinic — set up in 2005 and helmed by a multidisciplinary team — is the first in Singapore and the region that manages challenging and complex chronic pain in children in an outpatient setting, KKH said.

The team includes a pain physician, speciality care nurse, physiotherapist, occupational therapist and psychologist.

Last year, the Children’s Pain Management Clinic received 130 referrals. This was double the number of referrals in 2019.

The clinic is now managing about 80 active cases, not including patients who have gotten better and those who have moved on to adult pain services.

The majority of its child patients are referred from other specialities within KKH; the rest are from pain specialists in private practice.

In March this year, KKH became the first hospital outside of Canada and the United States to be certified by ChildKind International, a global initiative dedicated to improving the quality of paediatric pain care around the world.

KKH now joins the ranks of 11 other well-known paediatric healthcare institutions in North America, such as Boston Children’s Hospital, that have been recognised for their excellence in pain prevention and management in children, as well as promotion of pain education.

The international certification is endorsed by 12 pain-related organisations including the World Federation of Societies of Anesthesia and the American Society for Pain Management Nursing.

HOW CHRONIC PAIN AFFECTS A CHILD’S LIFE

Intervention plans devised by the Children’s Pain Management Clinic at KKH help patients manage their pain symptoms, allowing them to have a semblance of a normal life.

Before referral to the clinic, most investigations to exclude other more curable causes of pain would have been carried out by other specialists.

Dr Yeo said that chronic pain can be intermittent or constant.

Based on cases seen at the Children’s Pain Management Clinic, patients may have chronic headaches on a daily basis, recurrent abdominal pain or persistent musculoskeletal pain. This may be accompanied by other symptoms such as giddiness, fatigue, nausea and “brain fog”.

“Imagine being in pain for the whole day and not being able to fall or stay asleep because of the pain. It can be miserable and exhausting,” Dr Yeo said.

"(The child) can also experience acute flares in pain, which may be unexpected and intense and tend to be prolonged.”

Because of changes in the sensory system and brain when one experiences chronic pain, the child may experience pain in other parts of the body as well, she added.

Chronic pain can also lead to difficulties with sleep, school attendance, mood as well as engagement in family routines and hobbies.

“Affected children tend to withdraw from social situations, and feel frustrated, isolated and misunderstood.

“Similarly, their siblings and parents find themselves arranging their own schedules around the patient’s pain, and this can lead to resentment and guilt,” Dr Yeo added.

For Aaliyah, acute pain flares caused her to miss many social events, including outings with friends and families as well as important examinations.

Besides repeating an academic year, she also missed most of her N- Level examinations.

She recalled her sadness over missing an important school excursion to a polytechnic’s open house. She was battling a week-long acute flare-up of pain at the time.

“It was such an important next step to my education journey and I couldn’t even attend it and see it for myself. I heard about it from friends and managed to attend the debriefing, but I felt that I missed out.

“I wanted to cry but I didn’t — not in front of them (her friends and teachers),” she said.

Aaliyah usually keeps her sadness and pain to herself, because she does not want to “spoil people’s day”.

WHY CHRONIC PAIN SHOULD NOT BE DISMISSED

International studies estimated that up to two in five children are affected by chronic pain, Dr Yeo said. 

However, general awareness of chronic pain in children remains poorly understood, with many patients left to struggle on their own.

Dr Yeo said: “The frustration of seeing multiple doctors and having many investigations but no good answers or resolution to their pain, and being disbelieved, is one of the major complaints that patients and their caregivers have.” 

She pointed out that the revised definition of pain by the International Association for the Study of Pain is “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage”.

“What this means is that pain is a subjective experience. A more concise and maybe more precise definition, is that pain is what the patient says it is,” she said.

“The worst thing one could do is to attribute it to being ‘all in the mind’. This is disrespectful of the patient, invalidating and unhelpful.”

WHY SOME CHILDREN DEVELOP CHRONIC PAIN

Chronic pain may start off with an injury or illness, like a bout of gastric flu or migraines, but in some instances, no cause can be found.

Why pain persists in some individuals and not others is a result of a combination of bio-psychosocial (biomedical, psychological and social) factors, Dr Yeo explained. 

Genetics, physical stressors (prolonged sitting, for example), psychological factors (such as academic stress) and social factors (such as family discord, poor family relationships), personality, mental health and parenting style can affect how people experience pain.

Other than these stressors, Dr Yeo pointed out that unhelpful thoughts about pain and assuming the worst can happen can also perpetuate pain.

Studies have shown that chronic pain is likely to persist in patients whose parents catastrophise, Dr Yeo said.

“The more factors there are working against the child’s favour, the more the pain is perpetuated. Some of these factors are modifiable, some are not.

“Once the modifiable factors are identified, and either rectified or treated, rehabilitation and recovery can start to happen.” 

The doctor said that chronic pain that goes unrecognised becomes debilitating.

“In an analogy that may be easier to understand, a short-cut through the grass becomes a well-worn path because it is used frequently. So it is with chronic pain — the body, nerves and brain become so used to pain that it becomes almost like the body’s ‘default mode’, albeit dysfunctionally so,” Dr Yeo added.

HOW CHRONIC PAIN IS TREATED

The Children’s Pain Management Clinic at KKH uses an interdisciplinary approach. Dr Yeo emphasised that “physiotherapy, occupational therapy and psychology are essential”.

“Sometimes, we are the first team that patients have seen who they feel believes them and helps them make sense of what is happening to their bodies,” she said.

Patients are taught to pace their activities, plan for short- and long-term goals to prepare them to go back to “as normal a life as possible”.

At the beginning, some medications may be necessary. Medications are usually tailed off when the child learns to manage symptoms and pain is less troublesome, Dr Yeo said.

The team also works with therapists from the KKH Child Life, Art and Music Therapy Programmes who teach the child coping strategies.

Parents also receive support through pain education, a pain flare plan and access to a dedicated support line.

Where necessary, the child may be referred for more assessments by professionals including trauma psychologist, psychiatrist and medical social workers.

Some children face complex psychological issues, such as grief and post-traumatic stress disorder, which can contribute to chronic pain, Dr Yeo said.

“The goal is to restore our patient’s daily functioning and wellness, and put them back in control of life despite the pain. When the child achieves this goal, he or she will be discharged.”

For patients who reach adulthood but still require therapy or support from a pain team, they are put on transition to adult general hospitals specialising in pain care services.

Aaliyah said that a diagnosis and an understanding of her chronic pain was the turning point.

“The diagnosis helped me to accept my condition and most importantly, learn how to cope. (The team at the Children’s Pain Management Clinic) has helped me so much. Without them, I won’t be here,” she said, adding that her parents and younger sister have also been a source of support and strength.

The diagnosis also stopped her from spiralling into self-doubt and unhelpful thoughts that impede recovery.

“When people keep saying things, like, ‘I also have headaches, but why are your headaches so bad that you can’t even get up? Just take a pill, lah’ or when doctors ask, ‘Are you stressed and don’t want to go to school?’, those comments really made me doubt my own pain,” she said.

Mindfulness and music therapy techniques that Aaliyah picked up from the pain team have been especially helpful: “When I learn to focus on every task that I do, the pain usually mellows and becomes a background noise.”

While she still experiences pain flares, the frequency and intensity have reduced. Seeing that she is now able to cope better, Aaliyah’s mother has started working again.

Aaliyah, now working part-time as a receptionist, retook her N-Level examinations as a private candidate this year. She was unable to complete most of her examinations in 2021 due to severe pain flares.

She plans to further her studies in a polytechnic and go on to university.

“I want to see myself succeed,” she said. 

The determined teenager has this message for people with chronic pain: “No matter what anyone tells you, never let their words dictate what your next step is, what you are. Never let the pain take over your life; never surrender to it.”

For more information on the Children’s Pain Management Clinic, read more on the webpage of KK Women's and Children's Hospital.