A Guide to Managing Pain and Discomfort in Parkinson’s

When living with Parkinson’s, the physical experience of the condition is often a complex tapestry of sensations. During a recent webinar hosted by the Parkinson’s Foundation, Dr Meaghan Lynch, a neurologist with Kaiser San Francisco, provided essential clarity on a topic that affects nearly 80% of the community: the distinction between general discomfort and true pain. Understanding this difference is the first step toward effective management and maintaining a high quality of life. Defining the Experience: Discomfort vs. Pain Dr Lynch describes discomfort as a mild unease or irritation that is typically short-lived. In the context of Parkinson’s, this often manifests as the familiar stiffness and rigidity that eases once you start moving or stretching. It also includes dyskinesias—those involuntary, restless movements that are often a side effect of medication. Discomfort is generally manageable through self-care, such as resting, adjusting your sitting position, or using supportive pillows to ease the strain on joints. Pain, however, is an entirely different category. It is an intense experience that is difficult to ignore. Unlike discomfort, true pain hinders your ability to move, prevents you from engaging in daily activities, and frequently disrupts sleep. Crucially, pain carries an emotional weight; it can lead to distress, anxiety, and a sense of isolation that impacts relationships with loved ones. Dr Lynch emphasises that if you are suffering emotionally or avoiding activities due to physical distress, you are experiencing pain that requires professional attention. The "OLD CARTS" Mnemonic: Talking to Your Doctor One of the greatest challenges for people with the condition is accurately describing their pain to a healthcare team. To bridge this communication gap, Dr Lynch introduced the "OLD CARTS" tool. By answering these specific questions, you can provide your doctor with a clear map of your symptoms: Onset: When did the pain start? Was it sudden or gradual? Is it linked to the timing of your medication? Location: Can you pinpoint exactly where it is? Does the sensation stay in one spot or radiate to another part of your body? Duration: Does it last for seconds, minutes, or hours? Is it a constant companion or does it come and go? Character: What does it feel like? Be precise with words like burning, stabbing, sharp, dull, or electrical. Aggravating Factors: What makes it worse? Does sitting, standing, or a specific movement trigger the flare-up? Relief: What makes it feel better? Does leaning a certain way or stretching provide a reprieve? Treatment and Response: What have you tried at home? Have heat packs, ice, or over-the-counter remedies helped or caused side effects? Severity: On a scale of 0 to 10, how intense is the sensation? More importantly, how is it impacting your ability to function at home or work? Common Pain Fronts: Shoulders, Back, and Nerves The webinar highlighted four primary areas where pain typically strikes. Shoulder pain is incredibly common, often leading to "frozen shoulder" if movement is avoided due to fear of pain. Dr Lynch recommends gentle range-of-motion exercises and careful sleep positioning—such as hugging a pillow to support the shoulder—to break the cycle of stiffness. Back pain affects the vast majority of people with Parkinson's, often due to the stooped, forward-leaning posture characteristic of the condition. Management at home involves moving wisely: avoiding heavy lifting, using long-handled shoehorns to prevent bending, and utilising mobility aids like the U-Step walker to support the spine. Dystonia and nerve pain present more specific challenges. Dystonia—the spontaneous twisting or cramping of muscles—is directly related to dopamine fluctuations and often occurs when medication is wearing off. Nerve pain, such as the burning or tingling of peripheral neuropathy, can sometimes be alleviated by "desensitising" the area through massage or contrast baths—alternating warm and ice-water soaks. The Mind-Body Connection and Prevention While medications and physical therapies are vital, Dr Lynch also advocates for a mind-body approach. Chronic pain can become "centralised," meaning the brain "remembers" the pain even after an injury has healed. Techniques like mindfulness body scans, guided imagery, and deep breathing can help "unlearn" these pain pathways and reduce the fear of movement. Ultimately, the best defence against pain is proactive management. This includes taking medication strictly on time to avoid the "off" periods that trigger dystonia and, most importantly, never stopping movement. Whether it is yoga, tai chi, or a Parkinson’s-specific dance class, staying active is the most powerful tool available for maintaining comfort and independence. If pain does arise, remember that you do not have to endure it in silence; with the right descriptions and a multi-pronged medical approach, ease is possible.