With his skates, pads and sports bag, 13-year-old Justin rushed out of the house, slamming the door behind him. His mother was waiting in the car to take him to his early-morning hockey practice. He had hopes of playing for a college league and eventually maybe even the NHL. That dream was shattered one day during physical education class at school when he suffered a minor neck injury, which led to the discovery of a very rare disorder that forced him to stop playing all sports, including his beloved hockey.
The diagnosis: Klippel-Feil syndrome – a congenital deformity – in which two or more bones of the spinal column are fused together.
Over the years, Justin managed the resulting headaches and stiff necks with Tylenol #3® and ibuprofen. He enrolled in horticulture science at Kwantlen Polytechnic University while managing a garden supply store. Then, while developing his green thumb, Justin developed cabin fever and cured it with a bite from the travel bug. Over the next three years, he took breaks in between his studies to travel to Australia and Asia. Shortly after his return home in 2006, Justin’s neck pain got progressively worse and the medications were losing their effectiveness. Then one day, after a long day at work, Justin suffered extreme neck pain to the point where he could no longer move. An MRI and CT scan both confirmed that his condition was deteriorating.
His doctor advised him to stop all physical activity, including his work. That day, at only 26 years of age, marked the start of a downward spiral of suffering that would eventually rob Justin of his work, school, friends, independence and enjoyment of life.
Despite the lack of activity and the stronger prescription pain medication, every day was a gamble. Justin would not know whether he would make it through the day or if his pain would return and derail his plans.
Justin’s pain overwhelmed him. Isolated in his room and confined to his bed, he spent his days mindlessly watching television programs and movies, and playing video games. He was forced to stop driving because he would lose sensation in his hands and legs. And he was unable to participate in regular social activities. Justin developed severe chronic depression, relying on prescribed narcotics and medical marijuana to numb the pain and escape the reality of his life. It seemed pointless. “I’d often cross the street and not bother to look for oncoming traffic,” he admits.
But there was hope.
In 2008, Justin’s mom, who was a former nurse, introduced him to Ruth Ringland, a nurse practitioner at Surrey Memorial Hospital with advanced education in pain management.
Persistent chronic pain is not a symptom, but rather a disease that is quite different from acute pain, for example after surgery or as a result of an accident. But left untreated, the neurological processes that transmit acute pain messages to the brain create ingrained pathways and actually result in physiological changes to cells. Like a scratched music CD gets stuck playing the same few sounds over and over again, nerve endings fire the pain message endlessly. Ruth Ringland gives the insidious example of phantom limb pain, where pain seems to emanate from an appendage that no longer exists.
Medication and interventions can help some people but they are usually not the only answer to managing pain. Medications are often initially effective but the effectiveness often wears off over time, especially with opioids such as morphine.
There are a host of factors that are interacting in patients with chronic pain. It’s not just about skin, bones and tissues. Anxiety, depression, neurotransmitters and the immune system all affect the way nerve signals are transmitted, and it’s a very individual thing.
The goal of chronic pain management is not to cure it; it’s about improving the person’s quality of life. How much an individual suffers from their pain is not always related to how severe the pain is. It’s not that severe pain does not cause suffering. It does. But an individual may be suffering because the pain has affected all aspects of their life – psychological, physical, social, financial and spiritual. Managing pain is about shifting the mind to re-define those aspects and find options to cope with the change.
Pain experts say that there are skills and behaviours that can help chronic pain sufferers live well with their condition. They refer to this ability to influence their pain as ‘#self-management’. It doesn’t replace physical therapies, medication and psychological support, but it’s a big part of feeling better.
To start controlling the effect of the pain first requires acceptance from the sufferer that they have the power to effect a change.
When nurse practitioner Ruth Ringland met Justin, she herself had wanted to better understand how to help patients like him manage their own pain when other avenues failed. She enrolled in a self-management pain workshop with Justin and five other patients. They attended the weekly workshops to learn practical skills and behavioural approaches to better manage their symptoms. Topics included dealing with stress and depression, appropriate exercise, relationships, nutrition, and pacing daily activity.
Despite learning some self-management techniques, Justin continued to struggle with his pain and its crushing impact. It was another three years before Justin and Ringland would meet again.
By 2011, #Fraser Health had opened a specialized pain clinic at the Jim Pattison Outpatient Care and Surgery Centre in Surrey. The Pain Clinic provided access to advanced techniques and specialized equipment to treat pain. Ringland and pain specialist Dr. David Twist identified Justin as a possible candidate for the Radio Frequency Lesioning (RFL) treatment. RFL treats certain types of chronic pain by interrupting or blocking nerve signals on a semi-permanent basis, usually for six to nine months.
There was only one problem: Justin’s needle phobia. In fact, the sight of needles scared him so much that his heart rate and blood pressure would suddenly drop and he would faint. Julie Carlson, the social worker at the Pain Clinic, worked with Justin over several counselling sessions using a variety of therapeutic approaches to help him overcome his phobia.
“Patients with needle phobias often have an overwhelmed nervous system including thought patterns that increase their anxiety before they even enter the treatment room,” explains Carlson. “I focus on self-regulation strategies and mindfulness techniques to help patients calm the mind and body before and during the medical procedure.”
Following Carlson’s counselling, Justin was determined to go through with the RFL treatment and overcome his fear. His first treatment was a success, and he suffered only a minor anxiety attack – fostering positive results. “It was like night and day,” describes Justin. The RFL treatments were effectively minimizing his pain. Justin returned every six months for the procedure, and each time it would get a little easier.
The tides were slowly turning as Justin chose to see life more positively. “I was miserable before, very negative. But now I try to avoid the negativity because it only makes the pain worse,” he says. Justin joined a yoga class offered at the Pain Clinic designed for those living with chronic pain.
With the coupled success of the RFL treatments and mind-body strategies, Justin gained the confidence and strength necessary to take back his life. He renewed his driver’s license and started connecting with friends again. He made travel plans and went back to part-time work as an actor in background roles in films and television.
“There is no cure, surgery or magic pill that will take away my pain forever,” says Justin. “I could keep taking drugs and more drugs until I was a vegetable in a wheelchair but I didn’t want that.” He has learned to manage his condition by pacing his activities. Whether it is doing the laundry or emptying the dishwasher, he takes his time and doesn’t push himself too hard. “It’s not worth it. If I go too hard, the pain can set me back for weeks.
7 principles of self-management
- Use knowledge about chronic pain to validate your experience, understand treatment options and empower you to be your own best advocate.
- Optimize your sleep – it may improve energy levels, pain coping and mood.
- Lifestyle changes. Eat well, quit smoking and use appropriate alternative and complementary medicine.
- Cognitive-based psychotherapy cannot alter pain but many people find it dramatically alters how much they suffer from their pain. Get help with anxiety, depression, anger and fear.
- Getting the right kind of support from your spouse and from others who have chronic pain can reduce the burden of chronic pain and offer alternative perspectives. Look into community resources, subsidies and help with employment and disability.
- Use gentle exercise and progressively increase activity to optimize weight, reduce stress and to improve tolerance, fatigue and sleep.
- Mindfulness, yoga, and breathing exercises will reduce your pain, calm your nervous system, reduce stress and improve your sleep.
Source: Pain BC Pain Toolbox