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.