Recently I went on a drug holiday. Because of the wonders of smart phones, it gave me time to read more articles, posts, and comments on Facebook than usual. In that odd close-knit virtual world, I discovered countless people with legitimate pain issues being treated with suspicion and asked to perform unreasonable steps in order to obtain pain medication from their doctors. There’s always been a stigma attached to using pain killers; however it’s become much worse than I realized. So I’ve decided to share this story of my past month to help raise awareness.
If you’ve read Peace with Pain, then you know I live with constant chronic pain from a currently incurable illness. Part of my treatment program involves taking pain medication, and includes an opioid by the name of Norco. This past year, the pills stopped working as well as it used to, despite all of my efforts to rest, practice pacing, and utilize herbal remedies. Doctors call this Tolerance. My doctor offered to increase my dose, or if I wanted to try a stronger medication, she could send me to a pain management specialist. (Because of new regulations and restrictions promoted by the DEA, she is no longer allowed to prescribe Percocet or anything stronger than Norco.) Starting over with a new doctor can be a nightmare when you have a cluster of chronic conditions, and taking stronger medications has a whole list of problematic issues, so I declined. Instead I told her I would try a drug holiday again before considering her offer.
With 18 years of chronic pain, I’ve faced this problem before. The solution to drug tolerance is not easy, but for me, it’s effective and has allowed me to stay at the same dose for over 12 years. (It took several years to find what medications offer me to most functionality.) The answer is what I call a Drug Holiday.
I have no medical training, so nothing here is medical advice. TALK TO YOUR DOCTOR FIRST if you want to go down this road yourself.
Without any scientific backing, it’s my theory that the body adapts to whatever conditions exist. In my case, there is an illness causing pain. The Norco blocks the pain receptors in the brain, and tricks the body into thinking the pain has decreased. (Nothing gets rid of all the pain – sorry to burst your bubble.) The body can then function at a higher level because it is not using all its energy to deal with the pain. However, the body is smart, and it adapts to the medication. It eventually figures out the pain is still there, and it increases the pain signals so they register in the brain despite the blocked receptors. This increased pain level forces the body to take steps to protect itself, including slowing down the cognitive processing and impairing memory (hello BrainFog), decreasing muscle strength (sorry, cannot lift that glass of water right now), and increasing fatigue levels (too tired to sleep or walk or eat). It feels like the illness is progressing as the body functions less and less. The cycle continues until something changes.
The easiest thing to do is increase the dosage or change to a stronger opioid. The first issues we face with that option are increased constipation and greater stress on the liver. The second problem is the adaption of the body and the likelihood of having to increase the dose again in several years. Each time we move up the ladder to a stronger medication to take on a regular basis, it leaves us with fewer pain killer options if we ever need them in an emergency. This is a long-term view, but an important one to consider if you’re facing a life of chronic pain. You may think the pain is as bad as it can be, but if you’re not passed out from pain, it can always get worse. (Again, sorry about that bubble bursting.)
The final problem is the delicate balance of finding the right dose of the right medications that provide the body with the highest level of functionality. Muscle relaxers work great at numbing my pain, but they leave me stranded on the couch unable to participate in life. I save those for when I’m in a flare and cannot do anything but watch television and rest, and even then I use them sparingly because their effects sometimes linger for a day afterwards. When we increase our dose, we have to watch carefully for the tipping point. At the correct dosage, Norco allows me to live an alert well-adjusted relatively normal, albeit modified, life. (For example, my days are much shorter than the average person, but if I meet a stranger they have no idea I live with chronic pain.) If I take something stronger or more pills then I need, I feel drugged and slow like when I take muscle relaxers – basically I lose functionality instead of improving it.
This is what doctors and government officials hate about long-term opioid use…they cannot standardize dosage and one pill does not work the same for everyone. They must rely on patients to honestly assess the effect of the medication and trust the patient to tell them what the correct dosage is for them. They also may need to try a variety of medications to find the right one. Add to this the risk of addiction in some individuals and we have doctors who are terrified to treat their patients. So keeping my medication and dose the same benefits not only me, but it also helps calm the doctors I encounter. (Yes, I’ll talk more about the addiction issue soon, as that is an important hot button topic.)
The other way to overcome the tolerance issue is to reset the body’s pain receptors. Again, this is just my theory and experience without any scientific backing. This resetting is what I call a Drug Holiday. Just like it sounds, I take a holiday from all the pain medications I take. This was my third time embarking on a drug holiday.
But wait…ALL of them, not just the Norco?
Yes. In order to reset the pain receptors, we have to let the body feel the levels of pain it experiences without the modifications provided by drugs. The really hard part is it can take a couple of weeks for the body to clear out the residual left by long term us of medications. Hence the importance of the Holiday part – when we do this, we need to take a break from our daily life. I am very fortunate to have the freedom to do this. I realize not everyone can settle into the couch for a month without losing everything they have.
I began with a rapid reduction in the amount of Norco I take, which is a tricky step. Because the body adapts to the medication, if we go off of opioids too quickly the body experiences withdrawal effects such as vomiting, sweating, and in extreme cases seizure. (Again this why you need to talk to your doctor!) During this phase, we have to pay close attention to the body to see how fast we can reduce the medication. For me, I was able to drop down to a half pill every other day after 10 days, and by day 14 I was off of the Norco completely. In order to deal with the pain, I took Tylenol during these two weeks, as well as relying on my non-drug remedies. (Keep in mind not all medications can be cut in half safely – talk to your pharmacist first.)
At this point, it was time to stop the Tylenol and my anti-inflammatory medications and herbs. I continued with my nutritional supplements (Juice Plus and vitamins) and added an herbal blend designed to detoxify the liver.
During the month, I limited my activities and embraced Netflix. I also got a new full back heating pad, took lots of baths, stretched as often as possible, spent extra hours in meditation (laying down at times) and saw my Acupuncturist and my massage therapist. The entire process was physically and mentally exhausting, and I was thankful I did not have to teach a meditation class. Most days I did not go outside even to get the mail.
By the second week, I began to adapt to my new normal. When I had to go to the store, I observed how impaired my driving was from pain and resolved to be extra cautious. The one other day I had to drive I planned lunch with a friend at the half way point so I would have a rest break before heading home.
I accepted that I could not always stand up on the first try. I gave myself a break from the inner complaints of pain by watching comedies and HGTV because I could not follow complicated story lines. I felt a sense of great accomplishment on the nights I cooked dinner for my husband – putting pizza in the oven counts, right? Basically, I let myself veg-out and fully accepted in that moment, this was my life. In the back of my mind, I remembered how this was my life for a very long time, before I found my doctor and she experimented with me to find the right dosages of the right medications. I felt the fear of that reality before meeting my doctor and accepted that too. I tried to sit at my computer, but lost all concentration after only a few minutes. I relied on my smart phone to distract myself with Facebook. I ignored most of my emails. It began to sink in that this could be my life permanently if I’m ever denied medication because it’s a potentially addictive opioid. I thought about how radically my life would change and all I would have to give up. I had to sit with that idea quite a while before I could finally accept it.
Today I’m taking Norco again, and my body is more alert, stronger, and functioning at a higher level than before the Drug Holiday. I am grateful my month of self-imposed torture worked! There is still pain and limits to my functionality; however I’m able to do more than lie on the couch. I’ve been increasing both the dose and my activity levels slowly over the past two weeks, seeking that hard to describe level of balance. Finding the balance between medicating pain and pacing activity is my responsibility as a patient who uses opioids, and I fully acknowledge and respect the importance of doing it. I wish more doctors were trained to educated patients on this point.
Teaching patients to be responsible, not through fear, but through an understanding of what medications can and cannot do, is the best way to reduce the risk of addiction. Opioids reduce physical pain, but they do not eliminate it entirely. Used correctly, they improve functionality. When used improperly, they impair functionality.
Every body is different, so there is no standard dose, and not all medications work for everyone. We as patients have to take on the responsibility of closely and honestly examining what medications (not just opioids, but all medications) do to us in terms of functionality and quality of life, and doctors have to trust what we tell them.
Addiction is a terrible disease, for both those who are addicts and for those who love them. We must provide easy access to treatment for those affected, and support for their loved ones. Addiction is a complicated issue, and the substance an addict uses to feed their addiction is rarely, if ever, the real root cause. To manage and eventually end the disease of addiction, we must be willing to look deeper into the reasons people feel the uncontrollable need to escape from their lives.
Death caused by the misuse of opioids is a real problem, and it is one we must take a holistic view of in order to prevent. We must be willing to talk about opioids openly, without stigma. We must accept there are kids who are seeking ways to alter their mind through drugs and offer them education. We must accept there are people who like the dissociated feeling of being over-medicated and drugged that allows them to escape from feeling their emotions, and offer treatment programs designed to help them find their way back to participating fully in life. And we must accept there are over 100 million people like me living with chronic pain, many of whom use opioids responsibly in order to function.
If you or someone you know is struggling with addiction, please contact your health insurance about covered treatment options. Virtual and in person support groups can also be found by searching online.
To help prevent medications from getting into the wrong hands, bring your unwanted medications to any police station in San Diego County for proper disposal. (Check with your local county for similar programs in your area.)
Please help protect our right to pain medication by contacting your government representatives in the House and Senate, as well as your local government officials. Let them know there are better ways to fight addiction than making life even more difficult for chronic pain patients.
In the past several years, a quiet war against opioids has been raging. I don’t know who is behind it or why. The media seems to be focused on addiction issues, but it appears that chronic pain patients are bearing the brunt of the attacks spearheaded by the DEA and CDC. Here’s a list of some changes you may not be aware of:
Norco and other medications like the codeine cough syrup you may have been prescribed the last time you saw the doctor for a severe cough were changed from a Schedule 3 drug to a Schedule 2, which is the highest level of restriction. (Schedule 1 is for drugs with no medical use.)
- Schedule 2 means only paper prescriptions are accepted by the pharmacy, whereas before a doctor could call the pharmacy or send the prescription electronically.
- Refills are no longer allowed, which requires a trip to the doctor’s office each month for a new paper prescription.
- Pharmacies must wait a full 30 days in between filling prescriptions, even if the doctor writes a new prescription before that time frame.
- Some doctors have opted to simply not write these types of prescriptions because of the extra recorded keeping and reporting involved.
The DEA has also put pressure on health insurers to increase the tier of opioids; instead of being a tier 1 generic drug at the lowest cost, Norco is now a tier 2 (brand name level) drug, even though it is a generic medication that has been used since 1943. Some plans have made it an even higher tier. The higher the tier means a higher cost and financial burden for the patient, many of whom live on a fixed income from disability.
The DEA has also succeeded in pressuring health insurers to implement quantity limits, taking away a doctor’s right to determine the appropriate dosage for their patients.
Some lawmakers are now pushing to implement a prior authorization requirement for some opioids. If you’ve ever had to wait for prior authorization to get your medication, you know this is a bad idea. Take a moment to imagine being in agonizing severe pain. You’ve made it to the doctor and they prescribed pain medication. You get to the pharmacy and they tell you they need prior authorization. This means the pharmacy must call your doctor, who then must call your insurance company. Once the insurance company has processed the request, they inform the pharmacy. How long do think all of this will take? How much unnecessary pain will patients have to endure while they wait for this process to play out? With a new prescription required every month and no early refills, now imagine having to deal with this every single month.
Thank you for reading this very long blog entry. You may not be directly impacted by chronic pain or this absurd war on opioids; however it does affect you and your right to pain medication should you ever require it. Please take action now by contacting your government representatives to ask them to protect our access to pain medication. Please also share this blog to help raise #OpioidAwareness.
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