Did your chronic pain begin as a child? If so, how did you react or react?
Did your body change after being in pain for a long time? What’s the most important thing you’ve discovered about pain? Why do you believe humans have a pain-producing biological system?
These are some of the questions posed by an international team of researchers to a group of 17 young adults from the United States and Canada who experienced chronic pain as children (aged 11-17 years). Participants suffered from a variety of pain conditions, including headaches and musculoskeletal pain, and had been in pain for at least six months.
Their responses, which were recently published in the European Journal of Pain, provide insights into how young people perceive pain and how they learned to cope with it. According to the researchers, the findings could help dispel pain myths and improve pain management in both adults and children.
“If we can identify what young people think about pain, we can figure out which beliefs are helpful, and which are not. Then we can use this information to improve pain education for young people, so they understand why they should seek out best-practice treatments,” says lead author Hayley Leake, PhD, a physiotherapist and researcher at the University of South Australia. “It is critical to challenge pain beliefs that do not align with modern pain science.”
Leake and her colleagues discovered that young people think about chronic pain in one of four ways:
- There is a problem with their body.
- As a result of an unhealed injury
- Nerves that ‘fire’ when they should not
- An overactive stress response
The 17 young adults have sophisticated and nuanced perspectives on chronic pain. Far from being meaningless or “all in their heads,” many people regard pain as an indication of an undiagnosed problem in the body.
“I think when we have pain in other areas, like the back, and it’s there for no reason, I really do wonder if there’s something going on in the body that’s not good that hasn’t been detected. Like soreness in the neck, if the person slept incorrectly, blood flow will be cut off; sometimes this just happens. But if someone is frequently sore, I believe something is wrong with their body.”
‘Nobody Truly Cared Enough’
When their pain did not respond to treatment, participants experienced stigma and disbelief, sometimes from their own families. The young person perceived this as a lack of empathy, which could have negative consequences for family relationships.
“I became hyper aware of my pain and drove my family crazy anytime I had pain because I wanted to know what was causing it. Then I realized it was going to be exhausting, and no one cared enough, so I stopped.”
Unfortunately, some children learn at a young age that their injuries may never fully heal and may become permanent. They had to figure out how to live with it.
“Rather than attempting to heal it, try to cope with it. Because everyone used to tell me when I was younger, ‘Oh, you’ll be over your pain before you’re eighteen, like, this is only temporary.’ I wish I had prepared myself better knowing that I would have it for a long time because that is now my reality.”
Many people became aware that their nervous systems were malfunctioning and sending out incorrect signals. This has been described as “useless pain” or “nervous system failure.”
“I’m pretty sure [nerves] get inflamed and confused, so they start firing signals that aren’t actually there, and the body gets confused and doesn’t know how to fix anything.”
“Basically, I explain my stomach (pain) to people as being similar to a peanut allergy in that the wires are crossed and it overreacts to things.”
Pain is exacerbated by stress.Some discovered the role of stress and how emotional pain can exacerbate physical pain.
“Learning about pain and how the body can become stressed, and how stress can lead to pain, has been extremely beneficial to me… I didn’t understand how stress causes pain when I was younger. I understand how stress causes pain now, and how stress can cause pain in your body through ‘fight or flight’ mode or adrenalin.”
“I noticed that when I am in more stressful situations or more focused on the pain it feels like ten times worse and there is just nothing I can do about it. As a result of being in a stressful situation, I am tense. I’m angry and tense, and it’s not helping my physical pain because I’m tensing up, which causes my muscles to hurt.”
Understanding the relationship between stress and pain has assisted some in learning how to manage their pain. They use stress-reduction techniques such as relaxation and deep breathing exercises.
“I think I have a better understanding of what’s causing the pain… I’m more efficient in how I treat it and have a better understanding that not everything requires medication now that I understand exactly what’s going on with the pain. I just know that I don’t have to take everything. I can breathe through it because it could be related to emotions or hormones or something like that.”
The 17 young people interviewed are part of a larger six-year study of 229 children with chronic pain who were followed into adulthood. Over 82% of the original group still has chronic pain as adults.
Researchers are currently working on a toolkit to raise awareness about childhood chronic pain on social media and in schools.
“Educating teenagers and young adults about chronic pain, as well as their parents and caregivers, and talking to them in the words and phrases they use and understand, is a first step toward change,” says Leake. “We know that when adults with chronic pain learn about pain, they improve more than those who don’t, and they value pain education.”
Erin Balsa is a highly skilled and knowledgeable health journalist with a passion for educating the public on important health and wellness topics. With extensive experience in both traditional and digital media, Erin has established herself as a trusted voice in the field.