Tips for Parents of Teens with Pain

As parents and caregivers, we all want the best for our children. Having a child with pain means change for all the family, and you may feel ill-equipped to handle these changes.

10 Tips for parents and caregivers of children and teens living with persistent pain

These ideas have come from years of experience working with children and families and seeing what works best in most situations.

Get good information about persistent pain so that you understand the situation. Understand why persistent pain differs from acute pain and how different strategies are needed to manage it.
Help your child live as normally as possible. Keep up the family routines, encourage your child to do their share and be involved in family activities.
Help your child develop a good support team around them. This includes you, your family, their friends, their school and your family GP and other health care professionals with your child in the centre.
Shift the focus away from pain. You can acknowledge pain is present but also encourage your child to engage in helpful pain management strategies such as getting involved in a favourite activity, using humour, music, dance, art, meditation and so on.
Recognise the effects persistent pain has on your child’s thoughts and emotions. Anxiety and depression are common, sometimes anger or fear, unhelpful thoughts and worrying. All of these can make your child’s pain seem worse. Professional help from your GP, a clinical psychologist or counsellor can make a difference.
Encourage your child to go to school every day. Getting behind in school and losing friends can add more stress and cause problems in the long term. You may need to work with your child’s teachers to make a pain management plan for school, which may include giving medication, limited time-out or rest periods, modified physical activities, and sending work home for days your child can’t get to school.
Don’t rely only on medication to manage pain. Sometimes several treatments need to be tried before a suitable one or combination is found. Medication by itself has a limited role in treating persistent pain because side effects often occur at relatively low doses, or it is simply not effective. Some medications are not licenced for use in children because they have not been studied in children and proven to be both effective and safe.
Discourage resting in bed or on the couch for long periods of the day. It may reduce short-term pain but causes problems with sleeping at night, making it harder to manage the next day. If this continues for a long time, your child will become run down, develop a sleep disorder, and have even more fatigue and pain.
Help your child to learn useful, active ways to manage their pain. Encourage your child to do activities they value and enjoy despite pain, including a gentle exercise program. A physiotherapist or exercise physiologist can help with a graded exercise program designed for your child’s needs.
Help your child develop a plan for a bad-pain day. Planning ahead can help your child worry less about flare-ups and manage the pain better. You may need to work with your child’s health care professional/s

How pain pathways work

Our brain receives messages from all over our body all the time. Much of the information sent to the brain is unimportant, and we are unaware that the information has been collected. The brain filters this information and decides if it wants us to take action.

For example, parts of our brain constantly collect information on how much urine is in our bladder. The brain usually allows us to continue our normal activities and be unaware of our bladder until it is full. As the bladder fills, more and more messages are sent to the brain. When full, the brain makes us aware of the need to go to the toilet. If we don’t go to the toilet and the bladder continues to fill, we will start feeling pain. Once the bladder is empty again, we are again allowed to continue our normal activities without noticing our bladder – until it becomes full again.

Different situations can affect how this system works.

If there is a painful bladder condition or infection, then more pain messages than usual are sent to the brain, and we feel the need to empty our bladder more often.

If we are anxious about our bladder function, then the brain focuses more on pain messages from the bladder, and we also feel the need to empty our bladder more often.

The effect of long-term pain on muscles

Muscles change when they are injured or when we are in pain – they tense up. Ever had a spasm in the back? – it sure stops you moving and bending! This is a normal protective reaction to prevent more damage to the injured part. Pelvic floor muscles behave like this, too when there is something painful in the pelvis. They tighten up.

Muscles aren’t meant to be tight all the time; after a while, they start hurting and adding to the pain. Humans are designed to move, so sitting or lying down a lot due to pain can make the pain even worse. Muscles that become even tighter can spasm, causing sudden, stabbing or crampy pains.

The effect of long-term pain on nerve pathways

When something painful happens to us, the nerves in that area send pain signals to the spinal cord and then to our brain. It is when the brain notices the pain that we feel it.

With long-term pain, the pain pathways from the pelvis to the brain change. This is called Central Sensitisation; once this happens, pain becomes more complex.

Mildly painful things become more painful. For example, intercourse may have been uncomfortable but is now painful.

Things that weren’t painful before become painful. For example, wearing tight jeans or your partner’s hand on your abdomen may feel unpleasant.

Pain can spread to a wider area. For example, the pain used to be in the lower abdomen but is now felt all over the abdomen, in the back and the thighs. This does not mean that the back or thighs are abnormal. The pain impulses have spread in our spinal cord and brain, and we feel pain in a larger area.

Pain can spread to other pelvic organs. For example, you may have had bad period pain or prostate pain before but now also have an irritable bowel or painful overactive bladder.

Central sensitisation is also common after sporting injuries, shingles, or any condition with long-term pain. The pain that is felt long after a badly injured leg is amputated (Phantom Limb Pain) is another type of Central Sensitisation.

The effect of long-term pain on our emotions

Thoughts and emotions can also affect pain. Feeling tense and anxious about family, work or relationships can worsen pain. Feeling under ‘stress’ from too many responsibilities and life events leads to tight, tense muscles. For those who experience painful sex, just thinking about intercourse can be enough to make pelvic floor muscles tighten without realising it. Guilt, worrying about the pain or relationship issues complicates things further. For men with an overactive bladder, worrying about where a toilet will be when leaving the house can cause the pelvic floor muscles to tense and pain to worsen.

The effect of long-term pain on wellbeing

When pain becomes chronic, our immune, endocrine and sympathetic nervous systems all get switched on to help us cope. The whole body gets involved. This may help in the short term, but when pain continues, these systems don’t function well. And neither do we. Our energy levels, sleep, bowels, concentration, resistance to infection – and lots more – are affected, and life becomes even more challenging.

It is common for anyone with chronic pain to have problems with poor sleep, fatigue, anxiety, low mood, nausea, sweating, dizziness or faint feelings.

The Good News – How to manage chronic Pain

Once pain has become chronic, it is unlikely that any one treatment will make it go away completely. However, you can feel positive about the future. There are many ways to manage this pain and make it a much smaller part of your life.

We all want a cure for pain, preferably one that is quick and easy; that is understandable. One day there may be such a treatment.

For now, the best treatment for chronic pain involves:

learning more about your mix of pains – this site has information to get you started on each of your pains
working with a physiotherapist who understands pelvic muscle pain to keep your body moving and muscles comfortable
using medications for central sensitisation of nerve pathways, if appropriate – while minimising the use of regular narcotic (opioid) medications
keeping active and involved in activities you enjoy – and learning positive ways to manage your pain

The pages on this site will help you with many of these things. Our Facebook site will help you keep up with new treatments and ideas. Our events calendar includes activities you may be able to attend.