Elite athletes train and compete under a watchful eye. Fans and coaches track and measure every step, roll, or throw.
But for athletes with a spinal cord injury, a key facet of their experience is unknown: neuropathic pain. Unlike musculoskeletal pain — say, from breaking your leg — neuropathic pain resides in the nervous system. And treating it is tricky: you can’t just pop an Advil or Tylenol and wait for the pain to subside.
A recent study in BMJ Open Sport and Exercise found that both recreational athletes and Paralympians struggled to describe this chronic pain, even as its intensity disrupted their daily lives. The research is the first to capture this pain in athletes with spinal cord injury and highlight the challenges in recognizing and treating it.
“I think looking at neuropathic pain in spinal cord injury patients is really, really important because managing neuropathic pain goes much more beyond just garden-variety pain where you’re treating everything with the same set of medications,” said Krishnan Chakravarthy, an interventional pain and spine physician and the president of Solaris Research Institute.
Though it’s less understood, neuropathic pain is no less painful. At its best, the person feels tingling and pins and needles. At its worst, the person feels like they’re being “burned alive.” Even though research on this pain is relatively scant, it affects as much as 70% of the 15 million people globally with spinal cord injury.
Movement and physical exercise can serve as a valuable pain distraction tool for disabled people. Study author Kendra Todd hopes that by looking at athletes and their coping strategies, her team can provide people with spinal cord injury and their physicians with a roadmap for how to study and treat neuropathic pain that some call one of the disability’s most difficult consequences.
“We need to get closer to understanding exactly what types of movement may best influence neuropathic pain symptoms,” said Todd, a senior policy analyst for the Government of Canada’s Office of Public Service Accessibility. “We’re not there yet, but we’re trying to at least increase the awareness of the presence of neuropathic pain amongst athletes with a spinal cord injury.”
With musculoskeletal pain, sensory receptors at the injury site communicate that information back up the spinal cord to the brain. But for people with neuropathic pain, those signals are impaired. Lesions in the somatosensory nervous system — which governs the body’s sense of touch, pain, and temperature — alter the system’s structure and function so that pain occurs spontaneously and often to innocuous stimuli. There’s a disconnect between what the body should be feeling compared to what it’s telling the brain.
“Something as simple as having bed sheets cross over their feet may send them into an absolute screaming set of fiery pain,” said Todd, who also coaches British Columbia’s Wheelchair Rugby team. “So something that should not be painful can be extremely excruciating, whereas for typical you know, musculoskeletal tissue damage, we’re kind of able to identify what the pattern is.”
This unpredictability underpins Robert Buren’s desire to “solve” neuropathic pain. The researcher at the University of British Columbia made history in 2013 when he became Canada’s first paraplegic Ironman. During that thirteen-hour race, in which he only used his arms to roll, swim and pedal 140 miles, the pain was everywhere.
“It may start like a tingling in my toes, but from my toes to my spinal cord injury, it feels like my skin is on fire. I could literally be in a pot of boiling water,” said Buren.
The pain lit up his body, incredibly fierce, but the race distracted him from feeling it. Buren’s experience corroborates earlier research from Todd, where she found that Paralympians reported significantly higher levels of neuropathic pain, and well-being, than recreational athletes, even though neither group had any difference in their coping strategies.
After completing this study, the researchers focused their attention on neuropathic pain. Using international standards for corroborating the existence of and measuring chronic pain of a person with spinal cord injury, the researchers surveyed 47 athletes with spinal cord injury from countries around the world. Thirty-one people reported intense pain, with more flare-ups at night.
The study has sampling limitations, as 85% of the participants were white and 68% were male. The researchers brought in a Paralympic athlete with spinal cord injury-related neuropathic pain to participate in the research process to help ensure the research accurately reflected disabled athletes’ needs.
Todd has been investigating neuropathic pain and spinal cord injuries for nearly a decade. When her research interest in spinal cord injuries led her to the wheelchair rugby scene in British Columbia in 2016, she was hooked.
“The community basically said, ‘We’re interested in your work, but you have to be interested in our world,’”
She’s since coached several teams and had a few players compete in the 2024 Paralympics. Her research questions are mainly driven by the conversations and experiences with players. When thinking about how neuropathic pain can strike in strange ways, Todd remembers a wheelchair rugby training camp where one of her players kept shifting in his chair, in obvious discomfort.
“I went up and asked him, ‘how’s your body feeling? Are you OK?’ And he said, ‘I need to get out of my chair. I desperately need, you know, five or six minutes just to be lying horizontal, and I’ll be back in my chair shortly,’ recalled Todd. “He was able to alleviate some of the pressure and he was still uncomfortable when he got back in his chair, but it was just enough to take the edge off to shift his perspective to possibly help him cope with the pain better when it was at its peak.”
Todd said one of the paper’s most important findings was that many athletes — often people with a heightened sense of body awareness — struggled to adequately capture their experiences of chronic, neuropathic pain without being prompted with a list of symptoms.
This can prove troublesome for physicians who want to offer them pain relief options. Relief strategies for people with spinal cord injuries vary widely. Some study participants use drugs like gabapentin or tramadol. Others use cannabis. Developing strategies to handle the pain is universal, Kathleen Martin Ginis, study co-author and professor at the University of British Columbia School of Health and Exercise Sciences.
“If you’re experiencing a lot of neuropathic pain, but you’re still able to exercise and compete, you’ve gotta be pretty darn good at coping,” she said.
The lessons learned through this research are not just limited to people with spinal cord injury. Someone with diabetes or shingles can also experience neuropathic pain, and can help guide their treatment, as well. Learning how athletes, especially Paralympians, handle excessive amounts of neuropathic pain can be a boon outside of people with spinal cord injury.
Todd said her research has had a lasting impact outside the lab.
“It’s really shifted the questions that I ask my athletes, so I know exactly where their bodies are at during the tournament, during the competition, even just during a training practice, so we know exactly how hard and how far we can push our athletes,” she said.
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