“This has been such an ordeal,” she began, the exasperation in her voice audible over the phone. “My son has been struggling with this issue for about a year. He led a highly active life until one day when he developed flu-like symptoms. He was tested for COVID-19 but tested negative multiple times. Knowing it wasn’t COVID, we just assumed it was a different viral infection he would recover quickly from. After the initial illness subsided, he still felt unusually tired. The longer this went on, the more concerned we became. Moreover, he began to experience multiple body aches in his joints that prevented him from participating in many of his previous activities. Every spike in activity was followed by debilitating knee, hip, or ankle pain.”
After asking her about what impressions the physicians had given them, she went on to describe the parade of doctors who had seen her son. Many possible pathologies beyond a viral infection had been ruled out, but none of the doctors were able to pin down a reasonable diagnosis. They could say what possible illnesses he did not have, but not what caused his symptoms.
“Not knowing what’s wrong with him is so stressful,” she said. “It’s been difficult for our whole family.”
“I understand, and if I may, let me elaborate on why,” I answered. “Research in the area of both pain and stress gives an interesting insight into this dilemma, and there is a clear overlap between the two conditions.
“Unpredictability makes the experience of both pain and stress far worse. One of the most important factors in the management of both is the feeling of a sense of control over one’s circumstances.
“If there is a clear causal relationship between two events, our brains figure out how to adapt and respond. If a specific activity always produces an undesirable approach, we can respond appropriately.
“When the same activity produces wildly variable responses, it is hard to know what to do. In that way, unpredictability feels like complete loss of control.”
“Exactly,” she affirmed. “If we knew what to do or what not to do, it would be so much better.”
“And then, there is the name, which is the second problem,” I said. “When we name a pathology, we also assume we know something about its trajectory over time. If you fracture your arm, you know the course of events over the next 6–8 weeks. As difficult as it is to deal with the initial pain, there is a high likelihood things will improve over time.
“When a condition such as your son’s is undiagnosed, having a sense as to the course of future events is impossible. Is this a short-term struggle or will this go on indefinitely? It has been said that the brain is always asking three questions of each new experience: What is it? What does it mean? What do I do?
“Without a name, we don’t know the meaning. Without meaning, we don’t know what to do in response. That can feel powerless and stressful. Is this at all helpful to you?”
“Very much so,” she responded. “This helps me understand why this whole experience has been so difficult. It also helps to know it isn’t unique to my family, that there is a larger principle in play.
“I called you because several people have recommended we bring our son to you for treatment. Would you be willing to see him, and if so, what would that look like?”
“Whatever this virus was seems to have affected muscles in his lower body,” I stated.
“While there is some undetermined central mechanism driving all of this, it is clearly causing a hypersensitization in his leg muscles.
“Let’s deal with the muscles directly through targeted hands-on therapy. Moreover, if we can decrease the overactive neurological firing in the periphery, it may also have a beneficial effect on his central nervous system.
“There is likely a self-sustaining feedback loop at play, where increased central nervous system activity is increasing sensitivity in the periphery. In response, the periphery is now sending increased input back to the central nervous system, restimulating it. Maybe we can interrupt that process.”
I saw her son a few days later, addressing many of the muscles of his lower body, which were indeed very hypersensitive. We worked slowly and carefully, and the sensitivity decreased markedly during the session. The mother and I agreed to communicate closely over the coming days.
Her son began increasing his activity after our session and continued to do so with minimal discomfort. That process continued, approaching levels he had not accomplished in months. The mother shared how relieved she and her husband were during our last phone conversation.
“It’s kind of fitting that this all started in 2020,” she said at the end of our call. “Another uncertainty in a year filled with uncertainty.”
Well said.
Douglas Nelson is the founder and principal instructor for Precision Neuromuscular Therapy Seminars, president of the 20-therapist clinic BodyWork Associates in Champaign, Illinois, and past president of the Massage Therapy Foundation. His clinic, seminars, and research endeavors explore the science behind this work. Visit pnmt.org or email him at doug@pnmt.org.