How I Manage Chronic Pain and Parkinson’s Disease
Last updated: April 2023
Although more complicated than depicted, Parkinson's revolves around losing dopaminergic neurons (brain cells that make dopamine). The Nobel laureate Dr. Francis Crick once said this about the brain, "You're nothing but a pack of neurons."1
A common symptom in Parkinson's
A common symptom of Parkinson's is pain, specifically chronic pain.2
In this post, I will describe some of the ways I try to manage chronic pain daily. Suppose you are familiar with living with pain. This quote by George Orwell makes sense, "Of pain you could wish only one thing: that it should stop. Nothing in the world was so bad as physical pain. In the face of pain there are no heroes."
Questions to consider
Before I begin how I have tried to manage my chronic pain, consider these 3 questions:
1. How has pain impacted your life (social, hobbies, exercise, work, etc.)?
For me, chronic pain is more than a nuisance, it is a hindrance. So my pain, in the presence of Parkinson's, negatively affected all aspects of my life. But my persistence (okay, my stubbornness) has provided an avenue of health redemption to deal with the pain.
2. At what point in your diagnosis did you start experiencing pain?
I am active, but my pain became more of a chronic issue as my Parkinson's and I have aged together.
3. Has your neurologist ever discussed with you that pain could be a symptom of Parkinson's?
My neurologist did not discuss this until I brought it to his attention that I was experiencing pain.
Defining chronic pain
Chronic pain is typically said to be pain that persists beyond the usual recovery period (over 3-4 months), or it is a pain that occurs along with a chronic health condition, such as arthritis and neurodegenerative disorders like Parkinson's.3,4
Pain is a signal from our nervous system that something is wrong; the feeling is off or uncomfortable and unpleasant, and it could manifest as an itch, sting, deep piercing wound, or a burning sensation at the site of injury.5
But this is not an imaginary or fake injury that causes pain. It truly is real. Our brain is neither wired the same way nor functions the same way as before Parkinson's. However, chronic pain is genuine and not some psychological artifact.
Talk to others about what you are feeling
One of the first things I do about managing and dealing with my chronic pain is to reveal it and tell my spouse/partner or family. Do not hide behind a face like the pain does not exist. Living with chronic pain could explain many of the "off episodes" your loved ones have described for you lately.
The pain is real. It alters your actions, movement, and life. So do not hide. Admit your pains. As described by Karen Havelin, you and your chronic pain are linked together, "It's so hard to watch the person you love be in pain. It's a natural impulse to want to fix it, and not being able to is uncomfortable. Remaining in that state of discomfort over time is even harder. Being in a relationship with someone in chronic pain is like a chronic pain condition in and of itself."
Develop a stretching routine
I know that many of my pains are sports and exercise related. But are they due to Parkinson's? One key aspect of PD is stiffness, which can lead to decreased flexibility and reduced balance. In that case, the stiffness and lack of flexibility could exacerbate or prolong healing after sports or exercise injury.6
Regardless of what caused it, you do not deserve to live with the pain together with Parkinson's. As Anna Hamilton remarks, trying to deal with the pain, "Sometimes I wonder how I could have been so oblivious to the fact that proper pain treatment is, well, not a bad thing."
You can begin to deal with this by having a stretching routine for the entire body and, specifically, the areas where you are experiencing the most pain. In my experience, a good stretching exercise routine has benefited my body living with chronic pain.
One thing that has helped me is a program called Stretch Zone, a company that uses a proprietary series of assisted stretching. They have uncovered muscles and regions of my body that Parkinson's has held me back from stretching. If you go, be prepared to consume some dopamine - assisted stretching has been terrific and reminds me what felt my body like before Parkinson's. I have found it also gets easier with time. However, the stiffness does return. It is a temporary freedom, but an extraordinary and enlightening feeling.
Following stretching, I recommend exercising to move those joints. Get your blood flowing, get moving, and re-balance your body to remind yourself that there was a body before Parkinson's.
Find exercises you like and make it a routine. Finding others who like what you like makes it more fun. Your life with Parkinson's is different now, but it can still be good. I believe exercise can improve your outlook on life. My life now, with exercise, is better than without it.
I do specific exercises for my areas in pain, but I perform them carefully. I am dealing with chronic injuries and pain in my lower back, neck, and knees. My newest pain is focused on my right hip, right glute area, and right arm (specifically, the golfer's elbow).
Find a physical or occupational therapist
A physical therapist or occupational therapist skilled in Parkinson's can provide a program of rehabilitation for your chronic pain. They are not miracle workers, but they can come close. Keep your Neurologist informed - they may be needed to refer you to therapist.
Physical and occupational therapist are experts and can make a difference in coping with chronic injuries and the resulting pain. I have been fortunate to have worked with several excellent PTs over the past few years, and it is worth the effort and time to follow their instructions to rehabilitate your body.
Get good sleep
Finally, make sure you get some sleep. Sleep rejuvenates your body, restores your brain, and you can start over again. So whatever it takes, try to rest and sleep each evening, especially if the pain has intensified.
Living through chronic pain
Chronic pain is a constant issue in Parkinson's. Use your pain as a barometer of how much rehabilitation you can handle daily. Gain the help of a good PT or OT - they can make a big difference in managing your pain level.
I have often said: live each day; your disorder does not own you. Make every new day better; remember, you are still in charge.
Good luck in dealing with your chronic pain. Hopefully, get moving!
Do you experience issues with spatial awareness?