Since he hardly complains and it's like pulling teeth to get him to talk, I'm always wondering how my husband feels and what is going on with his body. I recently came across this article and I think it's helpful. Even if he's not complaining, he is probably in pain and very uncomfortable.
To help your understanding of the following article, an off-state is when the medication in the body is winding down and the body is not moving well. An on-state is when the meds are at their peak and working well to manage the body movements.
The word dopaminergic refers to medication used to create a sensation of dopamine in the PD patient, as their bodies cannot make dopamine (the chemical that controls ALL body functions). Since the brain cannot absorb synthetic dopamine, the medications must block the brain and trick it into thinking the synthetic dopamine is the real thing. That is one of the reason it is so difficult to get movement-consistency with PD medication.
It is important to note all of the things that must be taken into consideration when evaluating pain in a PD patient. You should never try and assess it on your own. Be sure to be in constant communication with your doctor about your pain and other symptoms.
Pain with PD
by Ehsan Hadi M. D., Movement Disorder Specialist, Dignity Heath Medical Group
Historically, Parkinson's disease (PD) has been recognized by its motor symptoms including slowness of movement, stiffness, tremor, gait changes. etc. The phenomena of PD related pain was described by James Parkinson in his original work, "An Essay on the Shaking palsy" and over time PD related pain is seen as one of the more common non-motor symptoms of Parkinson's disease.
Pain can be an early symptom and even precede motor symptoms by several years. PD pain usually occurs on the side on which motor symptoms first appear. It is found to be more common in younger patients and has a higher frequency in women. Presence of depression, systemic diseases such as diabetes, osteoarthritis and rheumatic diseases are also associated with a greater prevalence of pain in PD.
PD related pain is associated with stiffness, slowness, postural abnormalities, sustained/intermittent muscle contraction (dystonia), nerve compression (neuropathic pain), impaired central modulation of pain caused by dopaminergic deficiency, due to inner restlessness (akathisia) and musculoskeletal causes. The location of pain can be quite variable.
The pathophysiology of PD related pain is not well understood, however, overlap between dopaminergic pathways, pain processing networks along with lower dopamine levels, and disturbance in the pain inhibiting region probably lead to an increase in sensation or perception of pain.
Pain management can be challenging and best achieved by understanding the underlying mechanism and utilizing an interdisciplinary approach. PD pain is three to four times more common during the off-state rather than the on-state, which makes it essential to accurately identify the nature location and association of pain with dopaminergic medications for better management and appropriate referrals. Mood evaluation of the patient is also crucial because PD pain and depression/anxiety can be inter-related and may require specific treatment. PD pain management should be based not only on pharmacological but also non-pharmacological methods and, to some degree, invasive approaches and can range from optimizing dopaminergic medication, analgesics, tricyclics, DBS surgery, rehabilitative behavior, complimentary therapies such as massage, music therapies, etc.
PD related pain may not afflict all PD patients, but when it does can be debilitating. Yet it remains under-recognized and inadequately treated--mostly due either to not being discussed with the PD providers, not being recognized as PD related symptoms , or treated with inappropriate thereby leading to increase medication burden and thus warrants great attention and education.
Reprinted from The Parkinson Path, Distributed by PANC (Parkinson Association of Northern California, Winter 2018