Ask an Expert: Dr. Wile Discusses Pain and Parkinson’s Disease

Dr. Daryl Wile, MD, MSc, FRCPC, completed a Bachelor of Science in Psychology at UBC, a Master of Science in Behavioral Neuroscience at McGill University and Doctor of Medicine followed by residency training in Neurology at the University of Calgary. He also holds a certification in Neurology from the Royal College of Physicians and Surgeons of Canada.

Dr. Wile completed a Clinical Movement Disorders Fellowship supported by Parkinson Canada at the Pacific Parkinson’s Research Centre in Vancouver with a focus on genetic and brain imaging markers of clinical differences in Parkinson’s disease (PD). He currently practices at the Okanagan Movement Disorders Clinic in Kelowna.

How common is pain in Parkinson’s disease and what causes it?

Roughly 60–70% of patients with PD experience moderate to severe levels of chronic pain. While scientists are still working to determine the precise cause, we know that the neurological pain system can be broken, or have its function altered, due to Parkinson’s. PD can also lead to shifts in pain tolerance, changes to the pain system in the frontal lobe of the brain and/or dopamine deficiency, which can be painful.

As doctors, we often hear that people diagnosed with PD have experienced muscle stiffness or pain for years. Some automatic movements are reduced in Parkinson’s, like the swinging of arms while walking, which can cause stiffness. If this continues for long enough, it may result in frozen shoulder or inflamed muscle coverings.

Some people may feel superficial pain, such as the feeling of something crawling on their body, or a persistent tingling sensation. Other individuals may experience restless leg syndrome, another symptom of PD that will typically respond to dopamine treatment. These superficial symptoms can be uncomfortable or painful.

Often, in addition to PD related pain, people experience pain due to the wearing down of the muscles and joints related to general aging. Parkinson’s patients may experience degenerative arthritis, joint pain and lower back pain that are, for the most part, unrelated to the disease. Pain before the onset of the disease appears in 25% of people. Painful rigidity, like dystonia, is also common, as is constant aching pain in a limb, such as frozen shoulder. Often, but not always, these PD related pain symptoms will improve with levodopa treatment.

What is dystonia?

Dystonia is a very common condition. A long time ago, it was considered a psychiatric condition, but over time we have learned that there are a number of genetic diseases that cause it. The word itself roughly means ‘bad movement’ or ‘bad tone’. Dystonia is a sustained, abnormal posture of muscles that often leads to a twisting, cramp-like pain. Typically, when one group of muscles work to move a joint, the other muscle group is supposed to relax. When both muscle groups are active at the same time, as is the case in dystonia, it leads to twisting of the joints.

Doctors typically see dystonia as an “off” phenomenon. Suppose you have had PD for 15 years, and when you take your medications, they work for four hours. Then, when they wear off, you start feeling a twist in your limb. This is what we consider “wearing off dystonia”. You may notice that if you take another dose of your medication, the discomfort is relieved. I have a lot of patients who experience this. Alternatively, some people may experience peak dose dystonia as well or instead.

How is dystonia treated?

First, we look to see if the dystonia responds to dopamine treatment through levodopa or dopamine agonists. If that doesn’t work, we might inject the muscle with botulism toxin (Botox), or poisons that weaken the muscle for months at a time. The latter may sound strange, but it works for most patients.

What is dyskinesia?

Dyskinesia occurs when you have unwanted, writhing muscular movement. While dyskinesia is another condition that is not assumed to be painful, it can cause discomfort by moving an already painful limb.

What are other effects of pain?

Pain is associated with higher rates of depression and lower quality of life. When pain sensations reach the brain, they go to a part called the thalamus. When that stimulus is reached, it can override anything else that might be going on around you. This is why some people might say, “my hip is really sore but I only notice it when I go to bed at night,” which is when external stimuli are removed.

How can you manage pain?

By utilizing a variety of pain management tools, you increase your capacity to prevent suffering. No drug will erase all the pain. This is a very tricky problem. You need to identify the individual components of what is causing you pain. What can you fix? What can you work around? How can support be increased to reduce your suffering?

Clinically, your doctor will likely seek to optimize dopamine treatment. Pain medications can also help. I often encourage patients not to try to suffer through pain. You should use pain medication as long as it is deemed safe by your doctor. Doctors typically try to avoid prescribing opiates when we can, since they can lead to confusion and constipation.

If you are experiencing severe PD related depression, you should pursue treatment, whether that comes through counselling, medication or a combination of the two. Depression can act as a multiplier of suffering. Addressing an underlying mood disorder can give you more capacity to deal with the pain you experience daily.

Some action steps you can take to manage pain are:

• Staying active by incorporating exercise that appeals to you.
• Practicing strong posture and stretching.
• Keeping track of when and where you have pain, relative to medication timing and other symptoms. This can help us identify and treat the pain.
• Discussing treatment options with your doctor.

What are some complementary therapies that can help with pain?

Many studies have looked into complementary therapies. I think that with any of these treatments, you should prescribe yourself a goal, give yourself a time frame and assess whether it fixes the problem you want it to fix. Yoga, tai chi, and stretching can all be helpful to improve range of motion, reduce muscle strain and avoid painful joint contractures. Exercise can also help with mood and motivation, brain blood flow, neuroplasticity and muscle strength. Stretching is also very important for muscular strength and pain management.

This content was published in the Summer 2018 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.