For 15 years, I have been a failure at managing my chronic pain. I was prescribed oxycodone with gabapentin, and after my Parkinson’s diagnosis, I was put on levodopa. This decreased my pain to the point where oxycodone was no longer needed.
I also tried alcohol and marijuana in a rigorous attempt to make the pain vanish, replacing it with “feel-goods.” I know that chasing after “feel-goods” is not the right approach for me, so I stopped all the pain medications except levodopa.
At this juncture, I wish to be clear that I am not recommending anyone stop their medications. This is my personal journey, and I made decisions in consultation with my healthcare providers. For me, the risk of opioid treatment far outweighed the benefits.
Gabapentin in my system dulled my brain to the point that my cognitive abilities (or lack thereof) adversely affected my quality of life. Only in the last few months have all the pieces finally fallen into place to reveal a fresh approach to chronic pain management.
Chronic pain management is not just about popping a pill and hoping to be pain-free. No matter what I do, I will always have chronic pain from Parkinson’s every day. The goal is to live better. Medications that seek to disguise this reality within the gaudy attire of society’s “feel-good” addictions always send up big, red warning flags for me.
The brain has a remarkable ability to rewire itself so it can function better, even with chronic pain. If I am putting chemicals in my brain or using a set of addictive thoughts or feelings that interfere with that rehabilitative rewiring, then I must change or give up. Giving up and showing up are just a breath and a step apart.
The Parkinson’s chronic pain management program I use incorporates many of these small changes to help me live better. Here is my list:
- Know your pain and clearly identify the starting point.
- Exercise three to four times per week in a way that fits your abilities.
- Take charge of personal well-being by developing a wellness map.
- Use emotional threshold management.
- Reduce toxic stress from all sources, including diet and environment.
- Use medications to assist with brain rewiring, not to replace it.
- Draw upon your support system (including the sacred) to help with rehab.
This list reflects some of the information available to the public on chronic pain management. Each small change supports a small increase in the space between chronic pain and the thought or feeling in reaction to that pain. Each small change strengthens the stability of the pause.
With a long enough pause, it is possible to call on the conductor, who can then reroute the brain’s response to pain and surges of exaggerated mood (SEM) attacks. Once the conductor is called upon, one can discover something more — a fresh new look at chronic pain management.
The old ways of coping with pain were not working because SEM attacks were causing an exaggeration of the pain signal and emotions. In our search to live better with this, we discovered a new exercise approach, and along the way, a few gems of wisdom, including:
- Intense emotional experiences can exacerbate chronic pain.
- Uncontrolled actions connected to intense emotional experiences can also increase pain.
- Skilled meditators experience intense emotions differently than the average person.
- People with highly skilled conductors will experience intense emotion differently. Seeing the intense emotional experiences, along with pain, from the viewpoint of the conductor is not the same as the original emotional/pain experience.
- Marijuana used in a sacred way can help to hold open the viewing window for the conductor.
With patience and perseverance, I sat at the conductor’s viewing window every day for more than four months. Many of the discoveries from this view are chronicled in my columns.
Connected to SEM attacks is the idea of anxiety or sad emotion surges that are not tied to context. Many of the emotional surges were purely abnormal Parkinson’s biochemicals with no environmental or conscious antecedent — just a surge of emotion due to brain chemistry.
Given this to be true, and my history using a well-trained conductor, I passionately believed a new brain path would be found. At the time, I was just using the conductor’s window to find a way to tone down the SEM attacks. What I discovered was a lot more, and yet so simple.
The need to fight, flee, or act in a way to seek nurturing is an automatic, often instinctual response to pain signals. If those pain signals are exaggerated, the response can be, too. In my case, it is all based on illusion caused by an organic malfunction. There is no external threat that requires a fight/flight/nurture-seeking response. As Neo said in “The Matrix” sci-fi movie, “There is no spoon.”
This perception of the difference between a thought/feeling and an observed thought/feeling isn’t just an idea for me, but rather an experienced phenomenon connected to the vision of a better life. At the conductor’s window, I sat and watched the exaggerated illusionary signal, I watched the pain and emotions approach, and I saw them redirected down a new track leaving no consequence visible to others. I felt no fanfare, no bliss, no awe. Just a soft, everyday calmness and a sense that I can do this conductor rerouting.
In a prominent place in the home, I put up a calendar to document success. At the end of each day, I share with a family member the placing of a big, red check mark for every day the conductor successfully reroutes the reaction to pain and SEM attacks.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?