A Journey Through Diagnosis, Opioids, and Therapy

Lisa Lucking shares her chronic pain story, including going through opioid withdrawal

Lisa Lucking, author of the Lucrative Lives Opiates blog, recently spoke to Practical Pain Management about her chronic pain journey, her experiences with opioid use and withdrawal, and the importance of mental health therapy. She also recounts how her medical background helped her in the process of trusting her team of doctors and specialists, and what advice she would give for those looking to taper off of opioids.

In 2006, after a major car accident, Lisa Lucking was prescribed opioids for her severe back and neck pain. After refusing physical therapy due to the excruciating pain it caused her, Lisa later found that her C3, C4, C5 and C6 discs in her spine were completely torn all the way around. “[My neurosurgeon] said after he completed my surgery that my neck was way worse than anything they had seen on X-ray or MRI and fully understood my pain.” Although her doctors were originally hesitant to perform a spinal fusion surgery, once it was made clear that Lisa could not function otherwise, they went through with the procedure.

Lisa found herself on a regular regimen of 195 mg/day of opioids for a few years to keep her continued chronic pain at bay; then, in 2016, she decided to quit taking the opioids. “I felt the pain clinic kept increasing my doses due to the pain I expressed, yet it wasn't the pain from the lower level of my fusion I complained most about, it was repeatedly telling them that all my joints and muscles hurt.” Through personal research, Lisa later found that the pain she was still experiencing was potentially due to opioid tolerance. She soon set in motion her opioid tapering plan,* tapering down 10 mg/week until she was able to be administered suboxone (a medication used to treat opioid tolerance) to a level to keep withdrawals at bay, slowly tapering from the suboxone over a period of months.

Lisa shares more detail about her experience with opioid tapering and withdrawal symptoms in the following interview:

PPM: After stopping your opioid therapy, you continued to have pain and other challenges. Can you describe those?

LL: Yes, 14 months after quitting opioids, I was still having problems in multiple areas. I broke them all down and started to research what could still be causing me these debilitating issues. I came up with a few possibilities: an issue with a cervical fusion, multiple sclerosis, fibromyalgia, or arachnoiditis due to severe reactions from previous steroid injections.

I had previously been given the diagnosis of failed back surgery syndrome (FBBS) by my new pain clinic, but my neurosurgeon disagreed. When going over my fusion with him, everything looked good except for some arthritis in my C7, T1 vertebrae. So, after going over my symptoms, he referred me to a neurologist, feeling that the issues could be more neurological, or brain-based, in nature. That process alone took about 5 months. It has been long and daunting.

I have discovered that I now have what is called Cognitive Disorder, previously categorized as a “Not Otherwise Specified (NOS)” condition, meaning that it is unknown at this point if my pain and symptoms were the result of being on opioids long-term, or if they were caused by stopping the opioids so rapidly, or something else. From what I have learned, the biggest problem for neurologists is that they just don't have enough information on the long-term effects of opioids on the brain and body.

It is also possible that I am developing early-onset dementia, Parkinson's disease or Alzheimer's disease (Editor’s Note: Some studies have shown that individuals with cognitive impairment may have an increased sensitivity to pain). All three conditions, as it turns out, run heavily on both sides of my family.

Lisa LuckingLisa Lucking grew tolerant of opioids, which caused severe pain, and put the plans in motion to begin tapering. (Source: Author provided)

PPM: What advice would you offer someone about to go through an opioid taper or discontinuation?*

LL: First, educate yourself on how to do a proper slow taper, as this is best on your body and may even lessen the long-term effects or duration of effects. I would also strongly research suboxone and methadone, as these prescribed medications were made for opioid withdrawals. Short-term use of these meds at the end of the acute withdrawal phase can be extremely helpful.... I know now that the taper I had started on my own was too fast.

I imagined that my pain would be gone once the opioids were out of my system. However, the trauma of quitting 195 mg of opioids so abruptly seemed to cause my continued issues. Some doctors have told me that the opioids may have masked other symptoms I had as well. I guess time will tell.

Second, be prepared for pain. Take lots of Epsom salt baths! The initial pain you feel is going to multiply over time (although this probably varies per person) and should eventually subside. Follow the PAWS timeline so you know what to expect. (Editor's Note: PAWS, or post-acute withdrawal syndrome, is defined as withdrawal symptoms that persist for an extended duration, usually for a few days that repeat cyclically for up to a year, following drug discontinuation.) Relapses may occur, but this will pass and you will gradually start to feel better again.

Third, I can't stress enough to be kind to yourself and to your body. Be patient and ask for help when needed. I have been unable to work and have struggled financially, physically, mentally, emotionally and cognitively. I can barely do a load of laundry, let alone clean my house. This is where I have to be patient and know I can only do so much in a day. I’ve found a lot of informative and educational advice from You Tuber Ryan Donnelly, who talks about opioid withdrawal, a great resource if you are physically dependent on or are addicted to opioids.

PPM:  Why do you think mental health therapy is an important factor in chronic pain management?

LL: Mental health is so desperately needed for many factors. The acute withdrawal symptoms and the months that followed my opioid discontinuation were very rocky for me emotionally. I couldn't have done it without the support of my therapist. When other doctors wanted to give me an antidepressant, I instead wanted to reprogram my brain to forget about the years of emotions and countless outside stressors. I didn't want another medication to cover yet another symptom. I wanted to find the cause myself, and then find a solution.

Mental health therapy for one hour a week, every week, was necessary to get me through this process. The therapy helped me to see the big picture, to understand the difference between addiction and dependency, and to navigate the changes the brain goes through during this healing phase.

What I have found through my own research is that many addictions may be the result of a coping mechanism to deal with numb, deep-rooted pain. This emotional pain, for many, often unknowingly occurred in their childhood. For me, I was dealing with a 20-year on-again-off-again relationship with my ex-husband, along with finding therapy for my young son who has autism. During this time, I wasn't following my pain care regimen as much as I should have, leading to too many medication increases over a short amount of time. I was trying to maneuver in uncharted territory and I was an emotional wreck.

I shared my fears with my therapist, realizing that the opioids had gotten to a point where they dictated everything. I was no longer in control due to medication increases and I felt as though I was beginning to build a tolerance to the medication. In addition, I couldn't imagine my son finding me unresponsive or worse yet, dead. I am my son's only primary caregiver 24/7 and I am also his biggest advocate. Just the thought of me not being there for him absolutely terrified me.

I still believe that there is a time and place for opioids, Personally, I use them only on an “as needed” basis (for example, two to four times over the course of a month) in coordination with my doctor.

PPM: How did your 13 year-career in professional healthcare benefit you?

LL: I worked as a patient care technician in kidney dialysis. I was well trained and had the high critical thinking skills necessary to run treatment regimens. Being able to see a problem, find a solution, and look from every angle possible made the work come natural to me. My experience also benefited me when I accessed my own healthcare, and I knew I could trust in my medical team.

PPM: What else has impacted your chronic pain journey?

LL: Overall, I have learned that we must be our own advocates every step of the way, sharing our stories to help one another, especially when we are dealing with an industry suffering from a lack of knowledge. I highly recommend joining support groups, as you can gain lots of useful information from others going through exactly what you are dealing with. I also encourage you to share your story. Being true to oneself opens many doors and gives others the courage to talk about their issues. I have been astounded at the amount of support I received from my children, family, and friends on social media.

I am grateful for the opportunity to share my story, and hope that this will be helpful to medical professionals, dependent chronic pain patients, and for those with addictions alike. Be brave, you are stronger than you think!

*Disclaimer: This article is not meant to offer clinical or medical advice for opioid therapy, tapering, or discontinuation. Always consult with your doctor BEFORE tapering or discontinuing opioid therapy as he/she can work with you to set up the right course of action, talk with you about side effects and what to expect from withdrawal, and how you can combat those symptoms.

Updated on: 12/28/18
Continue Reading:
Opioids: Addiction or Physical Dependence?