By Konnie Parke
Scared, worried, anxious, and sleepless. These are only a few words which describe the emotions I’ve felt these past few days as I prepare to see my doctor, yet again, to ask to be put on low dose naltrexone (LDN).
And I think I’ve painted myself into the proverbial corner.
The pain is unrelenting. Why am I here?
The Demon Opiate
As an RN I have witnessed both professionally and personally the horrors of opiate addiction – the devastation to families, marriages and children. I am ashamed to say that after my experiences I was of the mindset that those who used opiates on a regular basis were “addicts”. Sure I had used opioids after my surgery and occasionally during 20 years of migraines, but never on a consistent basis. I hated the way they made me feel. I was terrified of them from the chaos experienced within my own family.
Then the broken leg, three years of surgeries, rehab and medical errors and finally, Complex Regional Pain Syndrome (CRPS) also known as Regional Sympathetic Dystrophy (RSD) of my left leg. Life as I had known it was at its end.
According to America RSD Hope “Complex Regional Pain Syndrome, CRPS, formerly known as RSD Reflex Sympathetic Dystrophy, is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury.” Additionally, CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index.
I underwent injections into my spinal cord. I refused anything stronger than a 5 mg. tab of oxycodone. I tried to work. I loved my job and was good at it. I would relent and take my little 5 mg. tab so I could manage through a day. I began to use a cane. I worked with my door closed because of frequent tears of pain. I had three heating pads wrapped around my leg so I could get blood to it. It was always mottled, blue and cold. I could no longer travel for my job and the strain of failure was lurking over my shoulder.
Still, I used the opiates sparingly and tried everything else that was thrown at me. Neurontin and gabapentin didn’t work, NSAIDS and Aspirin were a rare option because of previous stomach issues. I’m allergic to Acetaminophen. Cymbalta helped until I ran a fever of 104º and my urine turned dark. Tests revealed liver, kidney and colon inflammation. Even a spinal cord stimulator (SCS) did not help, nor did hours of massage therapy or the stem cell injection.
I came to understand the difference between addiction and dependence. I started taking the opiates as prescribed. I took them because they were my safest choice with the fewest side effects. I took them because they helped the pain, and my quality of life improved.
In October 2014 I walked into my PMP’s office to find a sign posted saying, “As of October 30, 2014 we will no longer prescribe oxycodone”. I was panicked! What would I do? When I saw my doctor he said, “Oh that does not pertain to you.” That was when I discovered the new scheduling and laws bound to restrict the of prescribing opioids.
Three months ago my dose was again increased for breakthrough pain. When I asked what else I could do, the Nurse Practitioner (NP) looked at me and said, “Trust me. I’ve been doing this for 20 years. I know what I’m doing.” Yes, she understood that opiates were the safest choice for me and she meant well. But HELL NO! I don’t trust a medical establishment infused with government regulation. I’ve dreaded the day when I would walk into their office and a “No Oxycodone Prescribed” sign did pertain to me.
This dread of suddenly being cut off from medications coupled with and my desire to try LDN led me to a decision I hope I will not regret. I’ve weaned myself from opiates. I did it preemptively and on my own terms.
Now, today as I await my doctor’s visit, I am recalling the past two months of sheer hell – the hell of weaning myself from opiates without advice and reliving the pain I had when first diagnosed. I don’t recommend it. I feel painted into a corner – and in my pain-filled corner I am questioning my decision. Will he prescribe LDN? Will it work? How long will I have to endure this pain? Have I set myself up for never being able to get opiates again if LDN doesn’t work? What was I thinking?
I’m waiting for the paint to dry. It seems like forever.
Konnie Parke is a 57 year old former registered nurse who suffers from CRPS. She has worked in various pediatric specialties and public health emergency preparedness. She lives in Utah.