"[P]ain in Parkinson’s disease often remains undiagnosed and untreated. Thus, it is im- portant to understand that pain can be part of the Parkinson’s experience and to learn ways to manage it."
-Jeffrey Wertheimer, Ph.D.
￼￼￼To Do List
- Tell your doctors as soon as you experience pain. Mention your pain to all doctors involved in your treatment (neurologist, orthopedist, primary care physician, etc.) so that they can work together to relieve your pain.
- Ask about types of treatment.
- Document your pain: when, where, description (burning, aching, etc.), and what has or has not helped your pain.
- Call PDF’s HelpLine staff — at (800) 457-6676, from Monday to Friday, 9:00 AM to 5:00 PM ET — with your questions about pain.
Pain is the most common reason people in the United States visit their doctors each year. Although pain is highly subjective and difficult to describe, a working definition is “an unpleasant sensory and emotional experience associated with actual or potential physical damage.” Its components are physical, cognitive, behavioral, emotional and perceptual.
Among people who have Parkinson’s disease (PD), pain is a major complaint. In fact, up to 85 percent of people with Parkinson’s report pain as a troubling symptom. Some of these people experience pain as an early symptom of Parkinson’s, before their disease has even been diagnosed. Yet, pain in Parkinson’s disease often remains undiagnosed and untreated. Thus, it is important to understand that pain can be part of the Parkinson’s experience and to learn ways to manage it.
Causes of Pain in Parkinson’s
Researchers classify pain based on the separation of tissue pain receptors from the nerves that transmit pain signals. Pain can be classified as nociceptive, which relates to tissue damage, implicating the pain receptors in the skin, bones or surrounding tissues; as neuropathic, indicating pain arising in nerves; or as a mixed pain syndrome involving both nociceptive and neuropathic pain. Your Parkinson’s specialist, working with a pain specialist, may select treatments based on the nociceptive versus neuropathic classification.
In Parkinson’s, most pain experiences are nociceptive — seeming to result from tissue that is injured or has the potential to be damaged. Causes include persistent tremor, muscle rigidity, dystonia, musculoskeletal injury (i.e., sprains, bruises, bone fractures resulting from a fall etc.), burns and inflammation. The pain is typically well-localized to the affected body part; it may fluctuate with medication dosing. Pain caused by dystonia can be diagnosed when there is visible twisting, cramping or posturing of the painful body part. The most common areas of the body where people with Parkinson’s experience pain are the neck, upper back and extremities.
In Parkinson’s, neuropathic pain is less common, and includes conditions not directly related to PD, such as shingles, cancer pain, carpal tunnel syndrome, diabetic neuropathy, and peripheral neuropathy. The pain may present as burning, numbness and tingling, sharp sensations, or electric shock qualities. Pain due to nerve or root disease is most commonly caused by akathisia, an extreme inner restlessness.
In practical terms, it often proves helpful to conceptualize the experience of pain in Parkinson’s as relating to one or more of the following five categories: pain from the muscles or skeleton, pain from nerves or spinal roots, pain related to sustained twisting or writhing, discomfort from akathisia and pain caused directly by changes in chemicals in the brain due to Parkinson’s.
The Impact of Pain
It is important to address pain because it may interfere with day-to-day activities, mood, sleep and overall enjoyment of life. Specific problems resulting from chronic pain may include sleep disturbance, malnutrition, social withdrawal, physical and functional decline, depression, anxiety and impaired cognition. Pain also accounts for increased overall health care costs.
A person’s perception of pain can be affected by emotional factors. Scientists have shown that depression, which affects approximately 40 percent of individuals diagnosed with Parkinson’s, plays an important role in the way people perceive pain. Similarly, tension and muscle stress caused by anxiety can compound pain.
Cognitive processes — how a person views pain and how he or she pays attention to it — also influence the level of pain a person feels. A person who pays more attention to his or her pain and reacts to pain with a high level of stress will likely experience more pain than someone who tries to ignore the pain and considers it irrelevant to his or her daily life. Feeling helpless to control pain — that is, believing that pain is uncontrollable or that there are not treatment options or health professionals available to assist in managing pain — can also make pain seem worse.
Fortunately, many options exist for treating pain. How can you find which are right for you? The first step is to talk to your doctor who can assess your pain and then help to build a pain management plan.
Assessing and Managing Pain
Your doctor can assess pain through a clinical interview and neurological examination, sometimes performed in both the unmedicated state and when the Parkinson’s medications are working fully.
Your doctor may also ask you to describe the characteristics of your pain. For example, when do you feel pain? Where in the body is your pain? Does the pain feel hot or cold, stabbing or burning? You also may be asked to report how pain impacts your daily activities — for example, walking or sleeping. The more information you can provide about your pain, the better your doctor will be able to diagnose and treat it.
Management options for pain in Parkinson’s include both the pharmacological (i.e., medications) and the non-pharmacological.
A combination of both may offer the best pain control, and an interdisciplinary model of care can lead to optimal results for pain management. Some treatment options include:
- physical therapy
- botulin toxin injections
- nutrition management
Because of the relationship between dopamine and pain, dopaminergic medications such as levodopa can affect a person’s perception of pain. People with Parkinson’s who are in the “on” levodopa state, when the medication is at peak effectiveness, report less pain than those in the “off” state. Pain due to rigidity or dystonia can be relieved by dopamine drugs, but on the other hand, may cause dyskinesias. Therefore, effective management of levodopa medication for people with Parkinson’s may help to reduce pain.
Because certain thought processes and behaviors can alleviate or worsen pain, some people find psychotherapy helpful for managing their pain. Techniques such as cognitive-behavioral therapy (helping to control the psychological response to pain; teaching diaphragmatic breathing, visual imagery exercises, relaxation techniques, etc.), and biofeedback may help ease pain, but are unlikely to eliminate it completely.
Additionally, a physical therapist can help to select and modify exercise routines. You should avoid activities that make your pain worse.
How Can I Get Started?
If you or a loved one experiences pain, take action with the “To Do List” at right. This will put you on a treatment plan that will ease your symptoms, so you are able to live as pain-free as possible.
Jeffrey Wertheimer, Ph.D., is a clinical neuropsychologist at Cedars-Sinai Medical Center in Los Angeles, CA. He originally presented this topic as a PD ExpertBriefing, which is available online at www.pdf. org/parkinson_briefing_understanding_pain.
Understanding Pain in Parkinson's Disease
Category: Non-Motor Symptoms and Complications of Parkinson’s
Resource Type: Publications
Publication Date: 2011
Author: Jeffrey Wertheimer, Ph.D.
Publisher: Parkinson's Disease Foundation
Toll Free: (800) 457-6676
Associated URL: www.pdf.org/en/parkinson_briefing_understanding_pain
Address: 1359 Broadway, Suite 1509
City: New York Zip: 10018
State: New York
This educational piece, available online, in DVD or in print, is written by a PD expert and addresses the often overlooked and misunderstood subject of pain in PD. Specific topics discussed include the causes of pain, its impact and how it is assessed and can be managed. Also offered in Spanish..