There are days when I can’t get out of bed for longer than a few minutes without the aid of strong medication. Having fibromyalgia guarantees one of those days every so often—or very often, depending on the weather.
On mornings when my pain level is a 9 or a 10, the process of taking my medication goes like this: I stumble out of bed, still sleepy, usually with pain weighing on my back and shoulders and legs and also ringing in my head. I go into the bathroom to get all of my medications; aided by a small light plugged in near the bathroom counter, I shake them out of their bottles. Standing is painful, so I try to get to the kitchen as quickly as possible, meds in hand, where I stand in the dark and scarf down a banana or a granola bar. I swallow the meds with a full glass of water. Everything hurts. I don’t turn the kitchen lights on, because doing so would make my headache worse. After completing this series of tasks, I shuffle back to bed; my pain level is still high. I twist and turn under the covers, wishing for a respite from the pain, even as it feels like it will burst through my skin and consume me.
When the “strong” medication finally kicks in (after what seems like forever, but is about 30 minutes), I know I’ll at least get a few hours of restful sleep. The burning pain in my back, legs, shoulders, and head finally subsides. On “good” days, I can take a smaller dose; even on my “good” days, there is still pain. That’s the most annoying thing about chronic pain: it never goes away completely. Like the screaming sun from that one episode of Rick & Morty, it’s always there.
The “strong medication” I refer to above is hydrocodone, a prescription painkiller that happens to be an opioid. Consider whether your opinion of me has changed, now that you know that I’m one of “those people” who takes opioid pain medication.
We hear warnings from the media almost every day about the current U.S. “opioid epidemic,” in one form or another: an opinion column that says that opioids are so overprescribed, or that those medications are always dangerous, so no one should ever take them long-term; a state government official pledging to help end the opioid epidemic in their state by restricting access to prescription medication. Here’s another human interest story about someone who was prescribed codeine after dental surgery, used up their pills in a week, and in a month’s time had switched to heroin; a pain management doctor who had their clinic raided by authorities because there were “too many” pain medication prescriptions being written, and so on, and so on. Notice who is missing—with few exceptions—from those stories. People who deal with chronic pain are, by and large, left out.
Notice who is missing—with few exceptions—from those stories. People who deal with chronic pain are, by and large, left out.
While I’m far from 100 percent able-bodied, this medication enables me to do a lot of things that most people take for granted. After the medication kicks in, I am able to shower, take my foster dog on walks, prepare meals, and write — in short, live my life. The other meds have their duties (for depression, hypothyroidism, and muscle spasms from cerebral palsy), but the hydrocodone helps me to function properly. While I can function without it for a day or two, being on a consistent dose has allowed me to do things other than be confined to bed or my couch most of the time. I can go to concerts occasionally, meet friends for coffee or a meal, and spend time with family members. If this sounds banal, consider this: if your body is “normal” and you don’t experience chronic pain, the idea of having to take medication — opioid medication — to be able to function normally may be frightening to you. To me, it’s almost miraculous.
There is a mirror side to using this medication, however, and that is what it’s like to be in pain without the aid of hydrocodone. I’m sure that there are people in chronic pain who can manage without opioid medication, but my pain levels overall have been so (positively) impacted by that class of medication that the very idea of without just forms a weird lacuna in my brain. The memories I have of dealing with pain pre-hydrocodone seem almost ghostly, or able to be expressed only in metaphor; having chronic pain is like wearing an overcoat of bricks 24/7, or like having heavy rocks crammed into your muscles all the time. When my pain level gets so high that the hydrocodone is minimally effective — which happens very rarely —I can feel a “flashback,” so to speak, to my pre-hydrocodone days.
Chronic pain feels like being trapped under a heavy rock, like a creature constantly gnawing on your muscles with dull teeth, like you’re being flattened by the pain. If this sounds like it could be disabling, it is, and that’s what so many people do not understand about pain: it’s there, always, and you feel it constantly.
Chronic pain feels like being trapped under a heavy rock, like a creature constantly gnawing on your muscles with dull teeth, like you’re being flattened by the pain.
The constant media blare of “opioids are dangerous” is why my use of hydrocodone — although I am on a stable dose — is tinged with fear. I’ve been taking the medication as prescribed, and on a consistent basis, for nearly seven years. Yet, I have a nagging feeling in the back of my head that all of the coverage of the “opioid epidemic” will continue to erase people who truly do need opioid pain medication, and who use it correctly, to manage their pain.
Worse still, the media messages could have real-life effects on pain patients. The recently revamped Centers for Disease Control’s (CDC) guidelines on opioid prescriptions for chronic pain, published in 2016, received pushback from chronic pain patients and disability activists on Twitter (full disclosure: I was one of them), and from a few medical professionals.
The CDC guidelines consisted of a number of recommendations intending to mitigate possible “harm” from opiate prescriptions for chronic pain, but many of the guidelines sounded — at least to some in the disability and medical communities — dangerously out of touch. The report’s section on the “Effectiveness of Nonpharmalogic and Nonopioid Pharmalogic Treatments” suggests that physicians and chronic pain patients turn to treatments such as exercise and over-the-counter remedies first, but there is no acknowledgment that many people in chronic pain have already attempted such treatments. Combined with CDC director Dr. Tom Friedman’s comments that prescription painkillers, even those prescribed for chronic pain, “are just as addictive as heroin,” the CDC’s guidelines have contributed to a turn against opioid prescriptions for chronic pain — and, just as crucially, to the public perception that opioids are “overprescribed” and thus serve no purpose, even for people whose health conditions require pain management.
It remains to be seen if — and how — state medical boards and doctors around the country will implement these guidelines. It seems obvious to me that the CDC did not consult pain patients or patient advocacy groups in developing the 2016 recommendations; due to this, I am not optimistic that those who hold institutional power in this situation will be prepared to listen to pain patients who need opioid medications to manage their pain, instead choosing to further limit access to these medications in the name of“preventing addiction.” It is long past time for organizations such as the CDC, the news media, and the medical field to solicit input from people with disabilities who have been helped by opioid medications. My pain — and that of other chronic pain patients — is not going away.