Understanding Pain in Parkinson’s: A Complex and Often Overlooked Symptom

In the last of our mini-series with the fantastic Dr Robin Fackrell we discuss the different types of pain that people can experience with Parkinson's and strategies for dealing with them. When we think about Parkinson’s Disease (PD), movement issues like tremors, stiffness, and slowness often come to mind first. But for many people with Parkinson’s, pain is a major part of the experience—and one that can be surprisingly difficult to explain, manage, or even get recognised. In a recent discussion, Dr. Robin Fatra, a Parkinson’s specialist, shed light on the many ways pain can affect people living with PD. While some pain is the usual kind—like bumping into something or a bad back—there’s also a more puzzling type of pain that seems tied directly to Parkinson’s itself. Parkinson’s can lower a person’s pain threshold, making them more sensitive to discomfort in general. But beyond that, there’s a particular kind of pain that many people with PD describe: burning, crawling, itching, tension, or pain in very specific areas of the body that don’t seem to match up with a typical injury or condition. This type of pain may be linked to low dopamine levels and other brain changes caused by Parkinson’s. Timing can be a big clue. Many people find their pain gets worse when their medication is wearing off, also known as being in the “off” state. For example, someone might feel intense pain late at night when their dopamine medication is no longer active, and that pain often improves once the next dose kicks in. That’s why it’s important to pay attention to the timing of the pain and whether it comes and goes with medication cycles. If pain is frequent and predictable, it may be a sign that a person’s treatment plan needs adjusting to keep dopamine levels more stable throughout the day and night. Some types of Parkinson’s pain don’t respond well to standard over-the-counter painkillers like paracetamol or ibuprofen. That’s because the pain may be caused by dopamine changes in the brain, not inflammation or injury. While it’s generally fine to try simple pain relief, these drugs aren’t always effective for Parkinson’s-specific pain—and regular use of some painkillers, especially in older adults, can cause issues for the stomach or kidneys. If someone finds they need daily painkillers just to cope, it’s time to take another look at the cause of the pain. Other tools for managing pain include physiotherapy and exercise. Reduced movement, inactivity, and muscle weakness can all contribute to pain. Staying flexible and active can make a big difference—not just for easing discomfort, but also for overall health. While any movement is better than none, exercises that raise the heart rate or promote range of motion—like yoga, Pilates, or Parkinson’s-specific programmes like Parkinson’s Warrior—may be particularly beneficial. Because pain in PD is so complex and varies from person to person, keeping a symptom diary can be very helpful. Noting down when pain occurs, what it feels like, and how it relates to medication timing or position (like lying in bed) can give clinicians valuable clues. Without this kind of record, it’s hard to pin down what’s really going on during a short clinic visit. And what about more advanced options like deep brain stimulation (DBS)? While DBS can be very effective for motor symptoms and certain types of pain—like dystonia-related pain in the “off” state—it doesn’t always help with the more mysterious, non-motor Parkinson’s pain. However, it may allow for more flexibility with medications, which in turn could help manage pain better. In the end, pain in Parkinson’s is a tricky but important part of the condition. It’s often under-recognised, hard to describe, and doesn’t always respond to typical pain treatments. But with careful assessment, a tailored plan, and an openness to different approaches—from medication to exercise to detailed symptom tracking—it can be managed. As Dr. Fatra points out, there’s no one-size-fits-all solution. What matters is understanding the root cause and building a personalised strategy to tackle it.