PAIN OR PD-RELATED PAIN?

By Peggy Willocks

A frequently asked question, "Is there any pain with Parkinson's disease (PD)?" is seldom properly addressed. The answer is both "yes" and "no." Not everyone experiences pain related to PD, but for those who do, the pain is very real. Left untreated, PD-related pain can cause symptoms to fluctuate and at times actually worsen. While I am not a professional specializing in diagnosing or treating pain associated with Parkinson's, I do hold expertise by virtue of living 17+ years with this neurological illness (diagnosed at age 44 with symptoms as early as my late 30's). I also have chronic pain, much of it attributable to the PD symptoms or medication side effects. Having some understanding of PD-related pain and working with your doctor to determine appropriate treatment options can help to greatly improve your quality of life.

Many doctors are either unaware of or fail to acknowledge the relationship of pain to PD, causing undue suffering. Pain experienced with PD is difficult to pinpoint, with patients often reporting that they "hurt all over." Failure to locate and assess the source of pain makes therapy choices even more ambiguous. Untreated pain can lead to more serious complications, to include sleep deprivation and depression.

It is likely that there are more cases of untreated PD-related pain than you might think, and it can be both debilitating and devastating. Pain is the body's "warning system" that it's time for a check-up. Ignoring such signals might result in more serious complications which can and WILL play havoc with emotions and mental well-being

APDA would like to explore this topic of PD-related pain further, and you can help. Complete our brief survey, Pain & Parkinson's, online. This is not a research-based survey; it is for informational purposes only. Pooling our first-hand experiences of PD-related pain will help us better understand it. Even more important, if quality of life can be improved by treating PD-related pain, then that should be our goal.

Pay Attention to Pain

I reported to my family doctor that I was having pain and numbness in my hands and arms. The doctor wrote it off as carpal tunnel syndrome and told me I could have "a simple outpatient procedure" done when I felt I could no longer tolerate the pain. When the symptoms grew more intense, adding severe neck pain, it sent me calling on the services of a neurosurgeon. The doctor discovered herniations of my cervical spine (neck), likely due to severe dyskinesias resulting from long-term L-dopa therapy. Over the last three years, two cervical fusions had to be done to relieve the arm pain. Had those surgeries not been done, I was told, a fall may have been fatal.     -   Peggy