By: Allyson Cain
"Success is peace of mind which is a direct result of self-satisfaction in knowing you did your best to become the best you are capable of becoming." John Woodman
Being a type A personality, it feels like a natural place for me to start writing about my experience in coming off long term opioids by thinking of it in terms of success. Why start here? Because it’s a big WIN and because I am immensely PROUD of myself and there is much to be gained for anyone who chooses to walk this path.
As many who suffer from chronic pain know, our definition of "success" does not typically correlate to the world’s definition. It’s not about climbing the corporate ladder or changing the world. Our life’s work is to manage our pain on a daily basis so we can support and love the people in our lives and find small but meaningful ways to give back to our community. Taking pride in "living our life well" is not about outward worldly recognition, it’s about the inner awareness that we’re managing the very best we can. "Achievement" looks different. And let me tell you — coming off opioids is a MASSIVE achievement with worthwhile benefits. It speaks to an internal strength to soldier on without the world cheering you on. In fact, the world might be doing the opposite — stigmatizing you as a person with addiction. It speaks of your love of self and others in your life motivating you to find the healthiest way to live because you want that for the people that surround you. It’s an inner achievement that is powerful. It takes stamina, determination and a tremendous amount of inner fortitude but it can be done. Each and every day that you move through withdrawal, you can reflect that you are achieving great things that are worthy of your effort and vision what your healthier future will look like. I used this to solidify my resolve and to boost my spirits during the many months of recovery. I continue to take pride in my accomplishment.
But how did I get to a place in my life where I had to deal with opioid dependence and withdrawal? I have lived with a chronic pain disease for 13 years. A few years into my journey, on the encouragement of my pain physician, I agreed to start taking OxyContin in the desperate hope of reducing pain and improving my quality of life. After 8 years of being on opioids, 24 hours a day, as directed and prescribed by my doctor, I realized that I had not experienced any therapeutic breakthrough and the efficacy of the opioids had long since weaned to little value yet the side effects continued. I made the decision to taper myself off and heal the opioid dependence that had developed.
It’s worth pointing out the difference between opioid dependence and addiction. Physical dependence occurs when the body adapts to a drug, requiring more of it to achieve a certain effect (tolerance). Withdrawal symptoms occur when the drug is stopped and are ongoing until the brain heals. Dependence can occur without addiction and this is the most common experience for chronic pain patients like myself who take their opioid medication as prescribed for pain. Addiction, or compulsive drug use, is characterized by intense cravings that make it extremely difficult to stop using a drug. A person with an addiction also develops dependence and tolerance making it more likely for them to seek out ever increasing doses to experience the drug effect. The intense cravings add exponential challenges to a successful withdrawal process for people who struggle with addiction. Those with chronic pain opioid dependence do not experience cravings (although short-term increases in pain do occur in initial withdrawal as does ongoing breakthrough pain related to the chronic illness so it can be challenging to find other ways to manage the pain especially when also dealing with withdrawal symptoms). Escalating usage can occur for chronic pain dependent people in a search to manage the pain but in my case, I never increased my dose, as I knew tolerance to the increased dose would soon follow and the slippery slope would continue.
Much has been written on the Internet about the challenges of withdrawal by people who have experienced it. On several sleepless nights, I found myself trolling these community websites trying to find a tip or clue about when I would see the light at the end of the tunnel. I will just say that it was the most physically challenging period in my life and enduring the incessant restlessness, lack of sleep and fatigue that wore on month after month called on mental and spiritual strength I didn’t know I had. For me, it took a year to complete the majority of withdrawal to be able to count on somewhat regular sleep most nights. It gets steadily better after that but healing continues in subtle ways. I can say the benefits are well worth it as I look in the rear view mirror after 2 years free of opioids. I feel better overall even though my pain level is unchanged. How so? My immunity has improved, my brain is clearer and my body is stronger. Gone are the "mini-withdrawals" across the day as the extended-release opioid started to wear out before the next scheduled dosage. Psychologically I am more relaxed knowing I am off a harmful drug that had long since stopped reducing my pain. I no longer worry about counting carefully controlled pills to ensure an adequate supply until my next doctor’s appointment in case it got cancelled or my pills were misplaced. There is a sense of freedom being clear of a drug that is capable of great harm.
I realize how lucky I was in my journey to arrive at these benefits. I chose to go through withdrawal quietly with very few people knowing. I had incredible support from my loving husband who picked up a great deal of slack and offered patience and love, along with a giant bathtub, healthy food, a warm home and without any stigma related to drug addiction. I also had the support of my GP to "give it a try" to reduce my now Oxyneo (previously OxyContin) dosage to see what benefits I gained without any pressure that I must eliminate it all. It was my choice to fully taper off all the narcotic. Choice and free will are very powerful ideas to make you feel like you are in the driver’s seat so you can take pride in each hour you make it through rather than feel resentment that this tough haul is being imposed upon you. I am also very fortunate as I had the support of my sister who is also a physician so knew I was medically safe and progressing "as expected" on days when it just felt surreal or too slow a process. Having her compassionate ear and medical knowledge was invaluable and I have saved our very long text message stream as a "journal" of sorts of my journey through withdrawal. I have intense admiration for people who try to weather withdrawal who do not have these things going for them. As well, for those who face intense, addictive cravings on top of withdrawal symptoms – their courage and inner strength is immense.
I do need to speak to the reality of dealing with chronic pain on a daily basis. A major factor that gave me courage to come off opioids was that I had found a few non-pharmaceutical therapies that I believed were helping manage the pain along with the non-opioid medications I have taken since being diagnosed. I use these therapies very regularly and rely on them to manage both the day-to-day and breakthrough pain that I experience. I won’t deny that it would be helpful to use short acting opioids on an occasional, "as needed" basis to help quickly manage breakthrough pain, when something important is happening in my life where I would like to be able to function rather than be side-lined for a few hours or days. I have not done so up until now as I know my brain is still healing and I have a psychological block of putting an opioid in my mouth after experiencing withdrawal and visualizing being clear of the drug. I think there is a massive difference between being dependent 24-7 on opioids where tolerance develops versus occasional use to manage breakthrough pain. Since most people with chronic pain do not have cravings, the drug is treating short-term pain rather than creating a high that would encourage ongoing use. I say this with great caution, as this approach to occasional opioid use needs to go hand in hand with clear education of drug side effects, tolerance and the hazards of drug dependence and withdrawal. Chronic pain is debilitating and I have great understanding and empathy for people who are trying to cope and live with quality.
It’s now widely accepted that long-term opioids have proved disappointing for the treatment of chronic pain. Physicians are grappling with how to deal with opioid dependence in a large population of patients with chronic pain where their treatment may no longer be effective but is leaving its mark on the body. Although I believe that physicians genuinely wanted to help their patients, how could so many of us not have been warned about the challenges of tolerance, dependence and withdrawal before we had racked up years of opioid use? While going through it myself, I wondered WHY the general public was not more aware of the tremendous challenge of healing from drug dependence? Why people had not spoken out? That said, I’ve observed over the past 2 years that singular voices are starting to speak out about their own experiences of withdrawal and healing. Just a few weeks ago, a lawyer in my community wrote an article for the Globe and Mail and shared his story of drug addiction on prescription painkillers. Although saddened by his story, it also gave me hope that he spoke out to teach others and that his story was published in one of Canada’s national newspapers.
The more we share, the more we can educate others before they make a choice about taking long term opioids and reduce the stigma and increase resources to support chronic pain patients who are going through drug withdrawal. In particular, by providing access to caring medical experts who understand drug withdrawal who can guide patients on creating an appropriate tapering plan and if necessary, provide methadone, suboxone or other pharmaceuticals to help with the taper. In addition, to be a resource, as needed, to offer ongoing medical support to ensure the patient’s physical and mental well being through withdrawal. In my experience, knowing that I was physically tracking as expected and that someone had my back medically was very helpful. I was fortunate to have this without having to seek out a short-term drug-rehab centre or methadone clinic, which comes with so much stigma.
In writing this blog, I hope it adds another voice to the conversation and offers encouragement that the benefits and feelings of achievement are well worth the ride.
Tips that might help:
- Prepare by choosing a window of time when you can have a lower profile and can greatly reduce commitments to go through the withdrawal process. Be really clear about why you are doing this as an anchor to return to again and again.
- Have a support person or "mini-team" who you can confide in so they know you are going through withdrawal and can pick up the slack and provide support.
- Having medical help in planning your taper and how to prepare tapering dosages would be very helpful. Since Health Canada regulated that OxyContin be replaced with non-crushable Oxyneo (lowest dosage is 10mg), creating ever decreasing dosages meant cutting up short-acting Oxy-IR into tiny slivers where there may not have been evenly distributed drug content. This also meant taking dosages every 3-4 hours rather than having a slow release across 8 hours so this made for more hills and valleys across the day. There is likely a better way but how to access it short of going to a methadone pharmacy every day?
- Experiment with a variety of tools to find small comforts throughout withdrawal. I lived for hot baths, compression socks and a vision for a better quality future. Plus, I let go of trying to be "productive."
- Try and get outside EVERY day for some light, fresh air and a short walk. You may have to drag yourself out by setting a goal of only 10 minutes but I typically gained momentum and 10 minutes would get extended once I got some air in my lungs. It really helped me gain energy to get through the day.
- Recognize the role of diet in exacerbating the restlessness. For me, any form of sugar (even fruit) or carbs (even healthy grains) during the withdrawal exacerbated the restlessness.
- Set landmark dates for yourself and celebrate the small and big wins!