In the past, many descriptions of Parkinson’s disease didn’t mention pain as being a significant symptom, the standard explanations usually focusing on the motor aspects of the disease. Of course these definitions are not incorrect but this disease challenges us in many ways and dealing with pain, is no exception. And it is one issue that often significantly affects quality of life, which is something none of us want to lose…it is much too important and unfortunately very often, difficult to maintain. Yet we continue to pursue it, committed to remaining as active and productive for as long as this disease allows.
Pain in fact is a frequent complaint in PD. It is estimated that 35 – 80% of Parkinson’s patients experience significant discomfort. This statistic represents quite a wide variability due to difficulty in studying something as subjective as pain – lack of standardized definitions and consistent assessment tools being real challenges. Regardless of its prevalence, by restricting mobility, interfering with sleep and affecting mood among other issues, pain in Parkinson’s can interfere with an individual’s daily functioning and life.
Most of the time, discomfort in muscles and joints is secondary to the motor features of Parkinson’s - lack of spontaneous movement, rigidity and abnormalities of posture –what is known as musculoskeletal pain. The most commonly painful sites are the back, legs and shoulders and it is usually more predominate of the side more affected by parkinsonism.
But there are many other categories of pain associated with Parkinson’s disease. Radicular or neuropathic pain is experienced as numbness or tingling, or a sensation of coolness in a part of the body, usually secondary to a pinched nerve because of something like a slipped disc or in some Parkinson’s patients is due to the strong and prolonged muscle spasm that can occur.
Dystonia – related pain occurs as its name suggests, at times of dystonia (prolonged, painful contraction of a muscle) most often experienced in the foot, neck or face and arm at different points in the dosing schedule, particularly the “off” phase when there is not enough dopamine replacement but can uncommonly also occur at peak-dose times. It can be one of the most painful symptoms those with Parkinson’s can face.
Akathitic pain is experienced as restlessness, a subjective inner urge to move, an inability to stay still and the inherent feelings of discomfort that it brings. It is primarily experienced in the lower limbs and can often be relieved by walking around.
Primary or central pain in Parkinson’s is a direct consequence of the disease itself and is not due to secondary causes. It can be described as a painful, burning, stabbing, aching, itching or tingling occurring in undefined areas of the body. This type of pain can be quite relentless and distressing.
Most often it is a combination of many different causes (multifactorial) but regardless of the type of pain, its presence can adversely affect health-related quality of life measures and in some people can even overshadow the motor symptoms of the disease.
And fact is that even though it has a significant detrimental effect on quality of life, pain in Parkinson’s is often undertreated. Diagnosing the source of pain in Parkinson’s disease can be difficult and is often a diagnosis of exclusion, meaning that all other possible non-PD related causes are ruled out first. But once diagnosed and classified, management can be directed towards treating the potential cause or at least relieving some of the debilitating symptoms.
There are interventions that you can implement in order to alleviate some of the discomfort along with a number of medication adjustments or additions that your physician can attempt that may also be of some benefit. Pain in Parkinson’s disease is a real and serious phenomenon. Minimizing the amount of pain that you experience is a necessity and a worthwhile focus for you and members of your health team.