Let me start with this. We need to be responsible patients and discuss any plans to come off medications with medical professionals first.
For the past three months I have been weaning off of every single medication I’ve been on since needing to manage chronic pain. I came to a point where I had enough of the patches, the reminders to take pills of which I couldn’t tell were working, and the onset of withdrawal symptoms after taking my medication thirty minutes late. Frankly, it was all BS. I felt sluggish and tired, drunk sometimes, even high. I couldn’t comprehend why I had to take these medications if they weren’t helping my symptoms.
I felt locked into a pattern of behavior: feel pain = take meds.
Whenever I would entertain ideas of saying screw it — rip off the patch, and throw the pills away — it would be like I had this huge mountain ahead of me to climb with no guarantee that my baseline pain levels would be even tolerable.
I felt like a zombie but wasn’t personally aware of how crazy I looked until I was clued in by my family. They said that I slurred my speech when I spoke, and that my eyes looked empty. I knew I wasn’t myself, but otherwise thought I was functioning at relatively normal levels, just flying under the radar. I would’ve never guessed I slur–how embarrassing! That clued me in on how vastly different my perceived reality was from my actual reality. That’s a scary place to be, psychologically.
What else did I perceive incorrectly?
Where else had I been an oblivious walking zombie, foolishly thinking everything was all good?
I couldn’t help to think back on various social situations and questioned my behavior…to the point of over-analyzing every move. It was nuts. And I felt nuts.
I decided once and for all that I would do a little experiment on myself. What more could I lose? I had nothing but time, and I definitely didn’t care about withdrawal symptoms — they’re nothing compared to the hell of chronic pain. More importantly, what if dropping the medications out of my routine helped decrease daily pain levels? Now that’s worth trying. After all, opioid-induced hyperalgesia, born from long term narcotic use, is a common but abnormal hypersensitivity to pain. Being in such a state, the efficacy of pain medications is greatly reduced, serving as a sign to patients that there is an imbalance present. I had to step out of my comfort zone and get real with myself. If I was truly committed to trying anything and everything humanly possible to change my state of constant pain, I had to try all things with gusto and commitment (otherwise known as the hard way). It took a change in my mentality to push me to take action. I had to logically deduce that if they [medications] weren’t working then I shouldn’t be wasting my time on hoping the outcome would change suddenly one day after a magical dose. That’s the definition of insanity.
I had options: rehab center or weaning [titrating] down with a doctor. I called various rehab facilities in California, and immediately felt like a drug addict. I told them I was inadvertently physiologically (physically) dependent on narcotics after three years due to a [now] lifelong injury. I was told that psychological addiction and physiological dependence are the same and treated the same. This statement could not be more false, and is refuted by many addiction specialists. Dependence and addiction are therapeutically treated differently — dependence being tolerance and addiction being positive reward reinforcements to negative behaviors. I was told that no matter how physiologically addicted one may be there is always a psychological addiction at play. Again, this is not true; these issues are separate and one isn’t needed for the other to present. Despite describing how I don’t have a desire for the medication, am not displaying troubling behaviors like stealing for a fix, and am personally requesting to get off the medications — these reasons weren’t enough to prove to them the difference. So I respectfully moved on to plan B: titrating down. I confidently told my doctor that I wanted off this ride. He was hesitant, but I was adamant since this was the only other way to do it safely.
Thus far I’m halfway through and feeling remarkably different. Most days I don’t have severe withdrawal symptoms, and attribute that to the virtue of weaning down step-by-step. Yes, I still deal with chronic pain every day but no longer have a need to think about it or manage it every second of the day. The intensity of pain is different — far less than what it was — and the type of pain is different. It used to be electrical in nature, but now feels related to musculoskeletal deficiencies in strength and coordination. I feel like I wasted so much time being in pain, hemming and hawing about coming off these medications instead of just doing it. There was so much trepidation leading up to the actual event — leading up to what being at my baseline could be like — that I would shy away and decide to start tomorrow. It’s always tomorrow. And maybe that’s the psychological part of the equation. But when I began to think differently about how to optimally manage each body system and each related symptom is when things turned around. I stopped being complacent, and became even more aggressive about my health but in a new way. I saw my body as a temple, a gift and how I treat it directly affects how I feel…and I just want to feel good. Trying to stop the pain at all costs turned into trying to find wellness at all costs. And it worked. Now I can walk and there is nothing I would trade to go back to how things once were. As I continue decreasing I will assess my body and discuss the ups and downs along with what it’s like being at a true baseline.
I want to encourage anyone who may want to wean off their medications to discuss in comments and ask, ask, ask questions — the best way to learn is from each other.