How It Feels to Be Force Tapered Off Pain Medication for Chronic Illness

It’s that time of the month again.

I’m headed to my pain management doctor (more like my PO or parole officer) for a monthly checkup and prescription refill.

It’s the same every month…I sit in an over crowded office for over an hour, after my actual appointment time. I’m called back by the nurse to a room where I am asked to leave all my belongings. I’m given a cup with my name, DOB and date on it to pee in. I go into the bathroom, clean “down there” with a sanitary wipe, open the cup, start peeing, catch the pee in the cup (sometimes I accidentally pee on my hand, gross!) close it up, wipe myself and place the cup within the little box in the wall.

I open the bathroom door to let the nurse know I’m finished. She comes in to look everything over, flushes the toilet and lets me know I can wash my hands. I’ve never been arrested or gone to jail, but I certainly feel like I have now. It’s like I’m visiting my parole officer monthly, instead of my doctor.

I go back to the room where the nurse originally had me leave all my belongings, and now I wait. My doctor comes in and doesn’t make eye contact with me any longer, goes straight to her computer and asks how I’ve been and if there’s any new symptoms or health issues since last visit. I tell her “my quality of life is slowly going down the drain since she started to force taper me off pain medication.”

I must have struck a nerve because she finally looks me in the eyes and states “it is not her fault and her hands are tied due to the CDC guidelines” and “there’s nothing she can do about it.”

I think about letting her know, I’m in on her little secret. No one is forcing doctors to taper their patients living with rare and painful diseases. Doctors have bought into the “Fear of Addiction” media, the US government, the Drug Enforcement Administration (DEA) and the Centers for Disease Control and Prevention (CDC) has sold us all on.

Instead, I smile and shake my head yes. Yes, I know she’s afraid that the DEA will barge into her office, take all her patient files and threaten jail time. Yes, I know she’s afraid to lose her career she’s worked so hard for. Yes, I know about the kickbacks doctors (maybe not her) receive now, if they lower their patients under a certain percentage off their pain medications. Yes, I know that she is no longer my doctor, the government now controls what medications I receive, how much I receive and how often I receive it.

My doctor stares at her computer monitor and asks me again, “do I have any new symptoms or health issues.”

I tell her it takes me longer to get going in the mornings. One of my major health issues is complex regional pain syndrome (CRPS) in my arms, upper body and head. My hands usually swell three times larger than normal every morning.

I let her know that my neck pain is getting harder to keep under control. I’ve broken it two times in two different car accidents, which led to five neck surgeries.

She tells me that my pain levels will go up as she tapers me, and then will start to lower once I’m completely tapered and my body adjusts to having no pain medication. She must be kidding?! I understand withdrawal. I’ve tapered myself several times off pain medication when preparing for ketamine infusions. My pain always did go up as I tapered, but it definitely didn’t “go down” or “go away” after my body adjusted to no pain medication in my system. Maybe she doesn’t believe the several diagnoses is accompanied with pain. Maybe she doesn’t believe I’m actually in that much pain?

She lets me know that I should prepare myself with the reality that she will completely taper me off all pain medications in the next few months.

I don’t say anything. I fight with myself on how to respond. I would love to give her a piece of my mind, but I know that will do nothing except give her a reason to dismiss me as her patient, immediately giving me a one way ticket out of the little care I still receive and probably red flagged for life on my medical records.

I decide to be the good and docile patient. I ask her if there’s any other medications or alternative therapies I can try? She smiles a little. She starts going through the different groups of medications I can try: gabapentin, different anti-depressants used for pain, blocks I can get in my neck, ketamine infusions, NSAID’s…I stopped listening at this point. I’ve tried what she’s suggesting at some point in my 25 year career as a patient.

I let her know I will research everything she suggested and next month we can go over these new options. She hands me my prescription and leaves with a “have a great day.”

I leave my appointment feeling helpless, hopeless and scared. How is it that as a United States citizen I am now treated as “junkie,” a criminal and a drug seeker? I’ve always taken my medications as prescribed. I don’t take illegal or street drugs. I’ve always been a great patient, following my doctors instructions and willing to try new medications and therapies when asked too.

Living with health issues for over 25 years, I’ve tried most medications and “alternative therapies.” I’ve always been realistic and careful when taking my pain medications. Pain medication will never take the pain away completely. It takes the edge off just enough to sleep and function throughout the day.

I’ve learned to use a combination of medications, therapies, diet and exercise in order to achieve the best quality of life. Taking away pain medication from patients living with constant and high levels of pain is barbaric and wrong!