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

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

https://themighty.com/2020/01/force-tapered-off-pain-medication-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!

15 Responses

  1. Steve, thank you so much for sharing Jonelle’s story. It’s perfect!

  2. Thank you Steve, for sharing my article I originally wrote in The Mighty.

    I’ve been tapered and force tapered several times throughout the years. If I confused anyone, this blog was about the time I was force tapered in 2017.

    I’ve been able to find a caring doctor that treats my health issues currently. I know how lucky I am at the moment.
    I often feel guilty that I’ve been able to find relief and so many are struggling. Some to the point of suicide or the body gives out to under treatment of pain.
    I wish there was some way I could help. I realize how lucky I am, altho I struggle daily with the fear that something will happen to my doctor and my medications will once again be gone.

    We need help. It seems almost impossible to somehow articulate to healthy ppl and ppl that do have the power to change things, how bad it really is for us. We are not only struggling with incurable lifelong diseases and major painful health issues. We struggle with what comes along with all of that. Losing everything we knew in our healthy lives; from careers, family/friends, having a family, to all the things we loved and liked in life. For me that was playing sports, fishing, anything outdoors etc.
    And if we are able to navigate through all of that, we now face losing the cornerstone of our healthcare.

    We also are labeled as an addict, PROP’s kill shot to all of us, and forced off the one thing that usually works in fighting pain.

    For me pain medications are my center, that allows me to do physical therapy, eat regularly, go to the chiropractor, and all the other therapies and medications on top of that.
    This is not only difficult to live with, it’s nearly impossible. This is why I’m thankful for our community.

    In the middle of the night, when I’m alone and the little devil on my rt shoulder starts overwhelming me with how will I get through this all?
    The angel on the other side of my shoulder reminds me that I don’t give myself enough credit for how truly strong I am and how thankful I am to have a community of others that does “get it and gets me.”

    You are the strongest and toughest women and men I’ve ever met. You keep me going.
    Thank you!
    Jonelle Elgaway

  3. These “drs” r spineless cowards w no conciences. I hope they burn in hell after receiving karma time 10000000000.

  4. About my post my MME IS ONLY AT 50 BTW.

  5. I am done w this life. Gone are the days Dr give a shit if your suffering or not. I have been in same meds for 8 years only one increase and that was because I stopped one of the other drugs I take . I am suffering severely the last 4 months due to Tris pharmacuticals changing their medicine to no longer work and cause new weird side effects and no this is NOT A TOLERANCE. I had saved a few old pills and took half of one and got immediate relief. I have been googling this stupid drug and there is nothing but complaints on how all manufacturer changed them so they don’t work. I stated this to my Dr and how I will be homeless soon as I won’t be able to support myself anymore. I also have new pain issues and asked her if she could switch my Norco 10 325 to Vicodin 10 300 and she had the nerve to says my Dr wrote in my notes to not change my medications and there is nothing she can do as she is a PA.YET MY OLD PA WENT RIGHT INTO THE NEXT ROOM AND TALKED TO MY DR WHEN I HAD A PROBLEM ONCE BEFORE WHEN I NEEDED THE INCREASE DUE TO STOPING THE OTHER DRUG. I TOLD JER I SEARCHED MY INSURANCE WEBSITE AND IT SHOWS COSTS FOR GENERIC VICODIN AND SHE SAID NO THEY DON’T MAKE IT ANY LONGER WTF????
    WHY IS SHE LYING WHY ARE THEY PUSHING THE NORCO THAT SUDDENLY NO LONGER TOUCHES PAIN? IS THIS ALL THE GOVERNMENT DOING TO DO SOME SICK EXPERIMENT ON US? I WAS IN TEARS AND DID AS SOMEONE SUGGESTED AND ASKED THAT SHE WTOTE IN MY CHART WHAT I SAID AND SHE SAID YES.
    I CAN SEE IF I WAS ASKING FOR A INCREASED BUT I WASNT I WAS ASKING FOR A DECREEASE IF ANYTHING AS IT HAS LESS ACETAMINOPHEN IN IT.
    SHE SAID TO TRY A DIFFERENT PHARMACY I EXPLAINED THEY WONT FILL IT AT OTHER PHARMACIES AND THE ONLY ONE THAT WILL CARRIES THE BRAND THAT GIVES ME EVEN WORSE SIDE EFFECTS MALLKNKROT AS I BELIEVE IM ALLERGIC TO THE CHEAP FILLERS IN THEM. THIS SHOULD BE ILLEGAL IF WHAT THEY R GIVING ME IS MAKING ME SICK UNABLE TO WORK ANYMORE PART TIME HAVENT BEEN ABLE TO CLEAN MY HOME IN 4 MONTHS NOW. ALL THIS AND I’M ONLY 45 . WHY WONT ANYBODY HELP US? I WON’T BE AROUND LONG SOMEONE CAN ONLY SUFFER FOR SO LONG AND HAVE ZERO HELP OR RELIEF.

  6. Sheep, all six of you.
    Your demise is now prescribed, yet you continue to merely acquiesce to the rhetoric of your prescribers.
    In this scenario you have nothing to lose and the clock is ticking.
    Take action, if not for yourselves, then for your dependants.

    Let’s meet again, here at Steve’s, within the week, to share progress notes.

    Remember, you’ve got nothing left to lose, but don’t even have freedom – as the song suggests…

    • Sheep? Have you ever had the state bureau of inv…… “visit” you? For simply e-mailing, writing and telephoning your “state board” of medicine to ask why this drastic, how do I cope with continuous, lifetime pain with zero hedge available, at least legally, responsibly. To get “visited” is very convincing to stop trying to “fight” the enforcers. Not running scared but, the ability to “march on Washington” is no longer possible, for myself and my spouse. Difficult to fight back.

  7. My Forced Medication Reduction started 1/25/19 and is still ongoing, even thought I am a 75 year-old palliative care patient. I have tried filing reports with government officials and multiple agencies, but no one wishes to get “involved” and they always sidestep the issue with some BS excuse.

    This FMR continues even after my pain management doctor (PMD) stated twice in my records that reducing my medication would result in significant loss of functional status. The PMD can’t give me a reason for the FMR. Last visit he tried to blame it on the CDC guidelines, but I pointed out that the CDC director said the Guidelines are not to be used to justify FMRs in June of 2019 (this information was ignored by the PMD). Also at the last visit while I was trying to tell the PMD about the increased pain (and lost of function) his (& and the clinic’s) FMR was causing me, he asked if i would consider/accept having a pain pump installed.

    Pain clinics make a lot of money doing everything from sending patients for sleep tests hoping they will require a CPAP sleeping mask to giving non-needed/questionable epidural injections to patients. Of course, if you want to remain a patient and get your meds, you submit to these tests – you have no choice! But, this is nothing more than extortion using intimidation to get patients to submit to these (many times) unnecessary tests/procedures. Last time I looked, extortion was illegal, but PM clinics are not unregulated and they pretty much do what makes them the most money.

    So, now that the PMD has forcibly reduced my meds to where I am having a lot of increased pain, losing the ability to function, and losing sleep, he wants me to consider submitting to surgery where a pain pump is inserted beneath the skin with a thin tube going into the fluid surrounding the spinal chord (i.e., the intrathecal space). Could this be the real reason for the FMR; to get me to a point in the FMR where the pain was so great that I would submit to dangerous surgery on my back/spine just to control the pain? I wonder how much the PMD/clinic would make off this? The possible risks of this procedure (and risks with the installed pump) can be serious to life threatening.

    I am currently reading a brochure given to me by my PMD on the Medtronic Pain Pump. Has anyone else had any experience with this (or another brand) of pain pump? If so, I would appreciate you comments/experiences.

    Thank you for reading my comment.

    • Just a note to correct a typo in my original comment where I stated, “PM clinics are not unregulated”. That should have been, “PM clinics are unregulated”. Please ignore the word “not” when reading this sentence.
      Thanks.

    • First, your physician absolutely KNOWS that IF she or he prescribes more than 90 mme daily (for now),, she or he WILL come under fire from the state medical board and severe “punishment” WILL occur. Our physicians have been warned either through a meeting or otherwise with the enforcers to NOT prescribe over 90 mme daily…PERIOD. I have been a PMP for 25 years and I have seen the “pumps” used fairly successfully and I have seen patients have a great deal of “trouble” with the pumps. God Bless and good luck!

  8. As a 25 year pain management patient with a “spine specialist” in NC, my pain “management” scenario is very much like the writer of this comment. It is the same…..nationwide. FEAR has gripped all opioid prescribing physicians, “specialists”. or not. CDC with DEA enforcement, should NOT be making the call for dosage levels when it is now WELL KNOWN, documented, as causing MUCH stress to be able to function, survive. The 2016 CDC “guideline” is a DISASTROUS “recommendation” for maximum dosage. WE, PMP’s are literally living a nightmare, suffering. 20 MILLION people/patients? We realize that those that CHOOSE to abuse substances need help but, the DEA enforced “guideline” is NOT the way to HELP these folks. The situation being called a “crisis” is insane. What about legal alcohol sales, TAXED alcohol sales that takes 10’s of thousands of lives per year because of abuse of it? Prohibition was tried once and DISASTOUS results….ensued. The same is happening with MEDICATION prohibition! There are MANY substances, compounds, to “use”,many LEGAL ways to kill ourselves with however, “opioids” do, have, and will ALWAYS be a beneficial way to manage continuous, intractable PAIN! I remember being pain free. Life CHANGES with continuous pain and what is happening with a maximum dosage for one and all is torture. WHAT is the goal? Extinction of those of us with unmanaged pain?

  9. My taper is starting next month..
    I’m so sorry very thing you’re going through. I am recommended for neck fusion surgery and currently recovering from big toe fusion surgery, just last week… I won’t even mention my lower back problems…I’m just at a loss. Why we feel criminalized for getting hurt. Or having an illness. We are not to blame for the heroin epidemic.

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