Laying Off Opioids: Part 1

As someone who’s lived with pain from rheumatoid disease for many, many years, I’m no stranger to drugs. I’ve been taking NSAIDs (non-steroidal anti-inflammatory drugs) on and off since 1987, DMARDs (disease modifying anti-rheumatic drugs) of one kind or another since 1988, and biologics since 2014.

I would love to say that these drugs have had a profound positive effect on my RD, but I’d be stretching the truth. Many of them have had no discernable effect at all. Others, while somewhat effective in suppressing my RD’s activity and progression, have had little effect on its symptoms, in particular, on the joint pain.

So as grateful as I am that I’ve had access to these drugs, and that after our many decades together, my RD isn’t worse than it is, I still have to say that opioids—narcotic analgesics—are the only drugs I’ve ever taken that have had any real effect on the sometimes excruciating pain this vicious disease can cause.

Nevertheless, I’m joining the reluctant but ever-growing ranks of former-opioid users.

I’m not doing this voluntarily. Although I’ve taken prescribed opioids of various types and strengths off and on for nearly 30 years—and I’ve done so responsibly and without abusing them—my doctors recently decided that I may no longer have them.

They tell me that deleting these drugs from my life is for my own good, that opioids are powerful, dangerous drugs. I might accidentally overdose on them and die. They say my nervous system and brain may become overly sensitive to painful stimuli, so that although the pain I feel is real, the opioids may be making it feel even worse (a condition called hyperalgesia).

And they pointed to daunting recent statistics regarding the “opioid epidemic” we’ve all seen hyped recently in the media. According to the U.S. Centers for Disease Control and Prevention (CDC), “… between 2000 and 2014 more than 500,000 people died from drug overdoses … In 2014, opioids were involved in 28,647 deaths, or 61 percent of all drug overdose deaths; the rate of opioid overdoses has tripled since 2000.1” Those opioids, stated the CDC, are “primarily prescription pain relievers (such as hydrocodone, oxycodone) and heroin …1

Naturally, I don’t want the benevolent drug I take to control my joint pain to kill me. But while I can and do cope and function reasonably well with some pain without opioids, once it rises past a certain level, this becomes difficult. Severe pain disables both mentally and physically.

To have the drugs that effectively blunt that pain suddenly withdrawn—and for as far as I know, forever—is, well, devastating.

Now, I’ve never been the type to worry over my future with rheumatoid disease. I’m a notoriously hopeful and optimistic person. I absolutely believe that, with funding, time, and research, medical science will continue to discover and develop better drugs to keep my rheuma-dragon and its symptoms under control. Maybe they’ll even find a way to kill the old beast! But I’ll be honest: I’ve also always had access to opioids when I needed them to blunt my pain. Being able to control that major symptom is one of the reasons I’ve been so hopeful and optimistic for so long.

I don’t mind telling you I’m struggling a bit right now. But even as I grapple with what to me looks like a scary, painful future, I still have hope.

I get my medical care through the Veteran’s Administration. And if I’m honest, I’m not surprised that I’m a sudden casualty of the government’s new War on Opioids. The VA is, after all, a government-run health care system. As such, the CDC and the National Institutes of Health (NIH), along with major medical schools all over the country, can use it as a major battlefield. So when my rheumatologist, and then my primary care provider, recently told me that they would no longer prescribe opioid analgesics for me (after prescribing them carefully but without trouble, off and on for more than seven years), I know they were acting under orders from above.

Here’s why I’m hopeful: at the same moment the door to opioid pain relief slammed shut on me, some other doors opened. I’ll soon start a series of VA-sponsored classes in Therapeutic Neuroscience Education (TNE) and Cognitive Behavior Therapy (CBT).2, 3 Both of these are methods for learning about and coping with chronic pain without the use of opioids. In addition, I’ll be attending a chronic pain support group, where I’ll learn about other pain control methods and talk with others, like me, who live with chronic pain. Finally, I’m in line for an appointment with a VA acupuncturist.4

And of course, I’ll continue with my NSAID, DMARD, and biologic medications to treat the actual cause of my pain: rheumatoid disease.

In the coming weeks and months, I’ll share my experiences with these pain-relief therapies with you here at RheumatoidArthritis.net and at my personal blog, RheumaBlog. My goal is to help you successfully navigate our rapidly oncoming, opioid-free future, too.

So here’s my first entry: at about two-and-a-half weeks into the weaning-off-opioids process (and without any help from my doctors—go figure!) I’m not a very happy camper. My pain levels are up and my spirits are taking a beating. But I’m holding out hope that TNE, CBT, and the other alternative pain relief techniques I’ll soon learn will help. I’m certainly going to give them the old college try.

Because you know what? The alternative is terrifying.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. Increases in Drug and Opioid Overdose Deaths in the United States, 2000-2014. (2016, Jan. 1) Centers for Disease Control and Prevention. Retrieved on May 15, 2016 from http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6450a3.htm?s_cid=mm6450a3_w
  2. Therapeutic Neuroscience Education: Teaching People About Pain. (2014, May 30) Institute for Chronic Pain. Retrieved on May 15, 2016 from http://www.instituteforchronicpain.org/treating-common-pain/what-is-pain-management/therapeutic-neuroscience-education
  3. Cognitive Behavioral Therapy. (2016, Feb. 23) Mayo Clinic. Retrieved on May 15, 2016 from http://www.mayoclinic.org/tests-procedures/cognitive-behavioral-therapy/home/ovc-20186868
  4. Acupuncture: In Depth. (2016, January) National Institutes of Health. Retrieved on May 15, 2016 from https://nccih.nih.gov/health/acupuncture/introduction

Comments

View Comments (8)
  • sweetannie
    2 years ago

    Another point to this opioid epidemic. The people who illegally chose to use opioids are making a conscious choice to do so. They are drug addicts and can chose to get help in rehab.

    Those of us with RA have no choice. We have a chronic illness, and there is no cure. An addict can chose to not use drugs. Those with a chronic illness cannot chose.

    Why discriminate against everyone? It is pretty obvious when one has a chronic illness. I don’t understand the government’s blanket policy on opioids. The war on drugs has been ongoing for decades. It will never be won. This is just another bandaid.

  • Wren moderator author
    2 years ago

    Hi, sweetannie,
    I agree completely, and I share your frustration that legitimate, responsible chronic pain patients have ended up being lumped in with those who abuse and misuse these powerful and, for us, essential and sometimes life-saving drugs. My hope is that in time the CDC and DEA will concede their mistake and lighten up. We’ll see. Thank you for giving up your time to comment and make your voice heard. 🙂

  • suebeth
    2 years ago

    I’m currently trying Duloxetine and I have to say so far so good. I’m very happy with it- any new pain just disappears after a couple of days. I have not been in as much pain as you but the relief of no pain for the last few weeks is amazing. Its supposed to be a neurological thing- all the problems still exist but the pain is gone most of the time.

  • ncpalinda
    2 years ago

    I am so sorry they are doing this to you. I feel your pain and personally don’t think I could do it. I hope you are able to get to a pain specialist soon so you won’t have to go this route.
    My pain specialist keeps hinting for me to cutback my pain meds as well. He wants me to get a spinal stimulator so i can come off completely. I have RA and neuropathy and have been told the stimulator will only help neuropathy pain, not RA pain. This is why I have decided against it for now. I think he is being pressured by the higher ups as well.

  • janlorraine
    2 years ago

    Hello Wren. I thought in a previous post you said that you would try a pain management clinic. What happened with that? Did they refuse to prescribe opiate medication for you? I went through this same ordeal more than a year ago and now visit a pain management doctor every four weeks. I hate it and I toy frequently with the idea of giving it up, but I need the medication too much so I put up with the constant humiliation and degradation that comes with each visit. I am also terribly anxious at each appointment that I will be told to reduce the amount of medication I take every day or informed that I must stop altogether. This is no way to live. I will continue to follow your progress with interest. janlorraine

  • Wren moderator author
    2 years ago

    Hi, janlorraine,
    Thanks for your comment. So far, no luck with an appointment to pain management, but I’m doing pretty well in spite of it. I’ll be writing more about it all soon.
    I’m glad you were able to get help with your pain, but sorry you have to jump through those hoops. My hope is that this sad, over-hyped situation calms down soon so that reasonableness can prevail.
    Be good to yourself. Take care.

  • Wren moderator author
    2 years ago

    Thanks so much, Carla. I’m actually doing very well in spite of everything. I’ll be writing more about it all soon. :o)

  • Carla Kienast
    2 years ago

    Wren: I am sorry you are going through this but I am glad the VA is giving you some options. I am hopeful you will find some relief and I know that we are all anxious to hear about your experiences.

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