Chronic Pain: An Invisible Symptom of PD

Targeted pain relief for Parkinson’s patients may be possible with targeted deep brain stimulation (DBS). Pain can occur for many reasons. It can be an early symptom of, or unrelated to, your Parkinson’s. Pain can be caused by some other condition or injury.1 PD pain is underreported and undertreated because of variability in experiencing, tolerating, and tracking. Pain can have both physical and psychosocial effects impacting daily activities and family life. It can be treated in multiple ways including medication and deep brain stimulation. Parkinson’s disease (PD) is a progressive, chronic movement disorder that is typically characterized by tremors, rigidity, and problems with gait and general smoothness of movement. People with Parkinson’s can experience motor and non-motor symptoms. Much has been written about psychological non-motor symptoms, but pain is another disruptive and disabling non-motor symptom of Parkinson’s. Deep brain stimulation Deep Brain Stimulation of the subthalamic nucleus has been used for years to control movement-related symptoms of Parkinson’s. A recent study from France suggests DBS can also be used to reduce the sensation of pain. Researchers have identified a novel brain network that senses pain in the subthalamic nucleus (STN). This area of the brain could be a potential target for pain relief in PD and other neurodegenerative disorders.2,3 Findings on this new pathway, called a nociceptive network, were published in the journal eLife. The focus of the research was to evaluate whether the STN can convert a harmful stimulus like an injury to pain and whether this pathway is altered in people with Parkinson’s. The study used a rat model with PD, rather than people. PD pain PD pain can be related to motor symptoms or not. A doctor should help you identify the source of your pain as it may be caused by something other than Parkinson’s. The pain experience varies and for some may feel like a burning, stabbing, itching, or tingling sensation.2 The researchers contend that symptoms not related to motor function may result from problems in the central nervous system. Recent research Research has been ongoing on the subthalamic nucleus area of the brain. This new research sought to evaluate any abnormal pain processing in the STN of rats using DBS.3 DBS treatments to the subthalamic area have been used to treat movement-related symptoms of Parkinson’s. The results from these recent studies demonstrate it also appears to reduce pain in animal models of PD. Arnaud Pautrat, the lead author and his team from the Grenoble Institut des Neurosciences used electrophysiology (the study of electrical activity in the body) to measure the way electrical signals of nerve cells in the STN of rats react when given an electric shock in the back paw. They discovered that nerve cells were activated by this electronic stimulation. They reacted in three different ways; some had an increased response, some a decrease, and others experienced no change in the baseline firing rate of neurons.3,4 Looking at rats with Parkinson’s, researchers discovered that nerve cells in the STN had higher firing rates and greater responses to pain than healthy rats. They believe this communication pathway is involved in creating the positive effects of DBS on pain. If DBS can block specific nerve activity it may be able to reduce the transmission of pain information.3,5 This leads researchers to believe that DBS can stimulate certain areas of the brain to be beneficial for pain relief in people with Parkinson’s. Target improved treatment options for Parkinson's The team believes more research is required to better understand the impact of DBS on the subthalamic nucleus area of the brain caused by Parkinson’s, which will help to target the development of improved treatments for PD and other neurodegenerative conditions including Huntington’s disease and migraines.3 [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] A large number of aging adults (65+ years of age) and many of us with Parkinson's are dealing with chronic pain. However, chronic pain is not a mandatory part of normal adult aging. You control how you manage chronic pain. Here is what I do, and herein is my basic philosophy. I can summarize it in one word: proactive. Defining chronic pain Recently, the World Health Assembly defined chronic pain as “persistent or recurrent pain lasting longer than three months.” Furthermore, they included optional specifiers based on pain severity (intensity, pain-related distress, and functional impairment) and psychosocial factors. From a brief review of this field, there is no clear consensus for defining chronic pain, except that it a real medical issue that mandates well-orchestrated care by physicians and other allied fields and experts in healthcare. Lynne Tillman said, "Now that I am conscious of the world of chronic pain when I see somebody walking down the street who's having trouble, I feel a sadness for them. I notice." Chronic pain in Parkinson's I recently posted a description of chronic pain in Parkinson's. Briefly, there are six steps that our healthcare providers may use to deal with our chronic pain, including (1) your quality-of-life matters; (2) keep a "pain diary"; (3) referral to a Physical Therapist; (4) carefully assess your dopaminergic-based drug therapy; (5) the guide called the Beers Criteria (American Geriatric Society), which helps your healthcare provider in improving medication safety in older adults; and (6) non-pharmacological intervention including different forms of exercise (especially non-weight-bearing activities) and other modalities. Keep in mind that you must be proactive in your approach to managing your chronic pain. Just like our Parkinson's is an individual disorder in terms of symptoms and rate of progression, chronic pain will also be individually expressed in anatomic location, the degree of discomfort, and how it alters our quality-of-life. My approach has worked for me. Moreover, I'm happy to describe it here briefly. Teamwork makes a difference My Neurologist and Internist are available by e-mail to answer my questions outside of my planned visits. Additionally, I routinely seek the advice of two key healthcare experts within the Movement Disorder Group, our Social Worker and one of our Physical Therapists. Separately, I have good relationships with several other Physical Therapists and researchers in the world arena of Parkinson's disease science and research. Thus, I believe that from what my 'constellation of healthcare experts' recommend, I can make the best-informed response(s) to manage my health, and especially here, chronic pain. Phil Anselmo remarked, "You can only exist as far as your mind will allow you to exist, and I think chronic pain will stop time dead in its tracks. You feel like you're the only one, and how unfair it is, and a million different feel-sorry-for-yourself type feelings." My management approach My chronic pain is primarily lower back and neck. Occasionally, I have foot and wrist/arm pain, but principally, it always includes lower back and neck. It was important to be an active participant with my healthcare team to formulate a plan. My Neurologist and I have worked hard to optimize my dopaminergic-based drug therapy (necessary since I am still working full-time and balancing many daily aspects of a career in academic medicine). My dopaminergic-based drug therapy now includes carbidopa/levodopa and a dopamine agonist (oral and external patch). Physical therapists gave me detailed exercises for my lower back and neck. My treatment approach was to exercise the areas as required by the PT recommendations. My maintenance plan is to use stretching and training on the regions causing the chronic pain. Again, stay engaged and go after the area(s) that are chronically in pain. In the initial time-period following my Parkinson's diagnosis, with daily guidance by our UNC Physical Therapy and Rehabilitation Group, I did LSVT BIG® with Dr. Diane M. Meyer. What a great set of exercises for a person-with-Parkinson's (PwP) to use to help their body be more regular, and it helped my chronic pain. It made a difference. I still use these exercises on an occasional basis. I then advanced to PWR!Moves® (PWR = Parkinson Wellness Recovery), a more dynamic set of exercises developed by Dr. Becky Farley. Pwr!Moves® routines allow a PwP to maintain or restore skills that deteriorate and interfere with everyday movements. Dr. Farley also was responsible for the LSVT BIG® exercise program. I try to do PWR!Moves® very frequently, and it makes a big difference for my chronic pain. I routinely get advice from the experts at the PWR!Gym in Tucson, AZ, especially Dr. Jennifer Bazan-Wigle and Dr. Farley. Deep-tissue massage has also provided some relief in my chronic lower back and neck pain. Neural Reset Therapy® or NRT is a specialized form of therapy. NRT applies the laws of physiology to approach the affected body area directly. The nervous system controls muscles, and the trained NRT therapist resets the nervous system to release a tissue from excessive tension. With this reset, NRT renews the area, and the pain is reduced. It truly works. I am fortunate to have access to an NRT-trained medical massage therapist (Kristi Vloedman). The final form of treatment I receive is by chiropractic care. At first, I was skeptical of this type of treatment. However, I have found much relief in my back and neck by routine visits to my chiropractors in Chapel Hill. A chiropractor focuses treatment of neuromuscular disorders, usually by manipulation of the spine. I am fortunate to have two phenomenal chiropractors (Dr. Shannon Bigbie and Dr. Avery Garrabrant at http://www.ignitechapelhill.com/) because they use a wide range of techniques and technology to treat both my back and neck pain, and they stress education and awareness of your physical condition. To recap, I use several different types of treatment plans and this uses several healthcare providers and experts to manage my Parkinson's and the chronic pain involved in this complex neurodegenerative disorder. Likely, in the absence of chronic pain, I might still have followed this treatment plan to deal with my disease. The reality of pain in Parkinson's In a recent study, Rana et al. found that PwP had significantly more pain than their age-match controls without Parkinson’s. Additionally, they reported that PwP with symptoms of depression had significantly higher levels of pain compared to control patients without depression. Your chronic pain in the presence of Parkinson's is real. Cheryl Richardson said, "If I were somebody dealing with chronic pain, I would see it as a challenge to manage my mind; even knowing that the effect of my thoughts is not only affecting my experience, but it is absolutely affecting the state of my health." You need to manage chronic pain carefully because it's part of your life-equation for quality-of-life. Use your experts to make a plan, try it, be proactive. If it is not working for you, revise the plan, but stay engaged. The goal is reducing your chronic pain; please keep working on it. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] In September of 2019, Health Union (the parent company of parkinsonsdisease.net) partnered with the US Pain Foundation for our first ever Chronic Pain in America survey to ask members of our communities about their experiences with chronic pain and what they wish others knew about their pain. 4,725 people living with chronic pain completed the survey and shared how pain impacts their life, from their work and employment status to changed relationships with family and friends. More than 8 in 10 respondents shared that their life has changed significantly as a result of their pain. These life changes have a large impact on quality of life and affect both physical and mental health. Does chronic pain ever stop? Chronic pain is a constant companion. The levels of pain may vary day to day, but for most, at least some pain is experienced on a daily basis. Back or neck pain was the most common diagnosis, with over 2/3 of respondents having been diagnosed with this. Additionally, 78% of respondents shared that they have experienced pain for at least 5 years. Does pain change a person’s life? The short answer is yes. Over 8 in 10 people shared that their life has changed significantly as a result of pain. Chronic pain impacts both physical and mental health and only 24% of respondents stated that they feel control of their life despite their pain. What does a “normal” day with pain feel like? Unfortunately, for many, a “normal” day is still really painful. Respondents shared that the pain they experience on a normal day makes it difficult to get out of bed in the morning or to do whatever they want to accomplish that day. But for many, they don’t have a choice. They push themselves through the pain daily leaving them exhausted, only to do it all again the next day. Pain interferes with work, relationships, and more Pain has affected work and career for over 2/3 of people who participated in the survey. On top of that, many reported changed relationships with family or friends and limitations when it comes to new places or spending time with others. All of this has a large impact on quality of life and what they are able to do day to day. Dealing with chronic pain Many respondents shared what they wish they had done sooner or advice that they would give to their former selves about pain. Responses ranged from sharing that they should have asked for help sooner or taken better care of their bodies to wishing that they had better advocated for themselves. When it comes to treatment, some expressed being more assertive about early treatment whereas others wish they had been more patient in finding the right treatment. The Chronic Pain in America 2019 survey was conducted online from mid-September through mid-October of 2019. 4,725 respondents were recruited from Health Union’s Community channels, as well as the US Pain Foundation’s member touchpoints. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

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