Parkinson’s disease (PD) pain is unique, so finding words to describe it is difficult. Not all those with a diagnosis experience pain. But for some, like me, pain is the major, disabling symptom. It is important to find words that describe the pain experience as clearly as possible. There is no “grin and bear it,” nor is this “a pity party.” Instead, this is a search for accurate articulation of the pain experience to help maintain quality of life.
Pain may be an early symptom of PD, according to a study presented at the 2018 World Congress on Parkinson’s Disease and Related Disorders titled “Pain: A marker of prodromal Parkinsons disease?” The American Parkinson Disease Association published research that supports the connection of pain with Parkinson’s, suggesting that if the pain is relieved with dopaminergic medication and the patient has a pattern of painful sensations that correlate to “off” episodes, more credence can be given to the idea that the pain is PD-related.
PD pain can resemble pain from other disease processes, especially as the patient ages and faces a multitude of other pain-causing conditions such as arthritis, spine degeneration, poor muscular conditioning, and such. In my case, PD pain is distinguished by the following:
- The progression of body pain correlated with the progression of the disease over time.
- Levodopa, a dopaminergic therapy, successfully reduces the pain.
- The pain is worse during “off” periods.
My PD pain also has a particular characteristic: stinging (sometimes knife-jabbing), irritating tingling, burning, and muscle heaviness with increased pain on movement. This pain happens over large regions of the body and varies in severity. At its worst, it can last several days and reach level 7, inducing spontaneous tears.
PD with episodic chronic pain is disabling in several ways. First, high levels of pain obstruct clear thinking. Second, high levels of pain induce the fight-or-flight response, which interferes with emotion management. Third, the amount of energy necessary to manage it is very tiring (even more so in the face of the deep fatigue associated with PD). Chronic PD pain entails much more than body symptoms.
Parkinson’s pain is a total experience that touches thoughts, feelings, and relationships. Even when it’s a struggle, finding the words to describe pain experiences is imperative to maintaining quality of life in the face of a difficult diagnosis. Finding the right words helps one communicate the pain experience to care providers, family, and friends — a network of relationships that help form the foundation for quality of life. By communicating the pain, those close to me are more understanding of why I act the way I do, which helps to maintain those relationships.
Over the years, I have watched my PD progression. I have taken the warrior stance to do all I can to slow the progression. My hardest battle is with the total experience of chronic PD pain. Large blocks of time disappear into the fog of war. Over time, I have learned the importance of communicating about the pain daily, sometimes multiple times a day. My partner asks, “Where are you today?” I will say, “I’m at level 5,” followed by a quick mention of the most bothersome symptoms. In the past, I kept track of the pain levels throughout several months to create benchmarks. This is all part of finding the words to describe the Parkinson’s pain experience.
I have been a “communicator” most of my life, but it remains a struggle to find words that describe the unique character of PD pain. If you experience PD pain, please share your descriptors in the comments. Together we may find a common dialogue that will help others.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.