How the Opioid Crisis Complicates Chronic Pain

Recently, the Centers for Disease Control and Prevention (CDC) issued guidelines to physicians, in an attempt to battle the opioid abuse epidemic in the US. I have seen and examined many angles of the issue, and therefore feel I have a unique perspective that I’d like to offer.

Living with endometriosis, I have had periods in my life where I was dependent on opioid medications to function. For this reason, my opinions could seem biased, but I’ve also shared six years of my life with someone who struggled with opioid addiction, and as a nurse of nearly 10 years, I’ve treated patients who were opioid dependent for numerous reasons. I will be the first to admit that, yes, there is a problem. I 100 percent believe that there is a significant need for change and reform. With that being said, there is a subset of people who are being left out of the conversation for this change and reform should start.

According to the guidlines, “Nonopioid therapy is preferred for chronic pain outside of active cancer, palliative, and end-of-life care.” Anyone who falls into the “other” category should try alternative treatments to opioid pain management, such as non-opioid medications, physical therapy, and bio feedback first, and opioids should be saved as a last resort.

This guideline carries a very heavy weight for those of us who fall in the “other” category. What is one of the most direct way this has played out? Prescribers are skeptical and cautious of any and everyone seeking relief of pain through the use of opioid medications, no matter what you’ve already tried, and no matter what your level of functioning is. I was lucky enough that while I was living with the worst of my pain, I had a team of doctors who validated the state I was in, and were eager to help me keep the highest level of functionality that I could have while keeping a full-time job as a nurse manager. This meant using opioids when over the counter medications stopped working. But, in speaking with many of my friends in the chronic illness world, my experience is seeming to become more few and far between.

Allow me to paint the picture of how I’ve seen the translation of these guidelines affect those of us in the “other” category.

Meet Jill, one of my closest friends. Jill is a bright, intelligent, and thriving 20-something currently living in Chicago, studying to be a lawyer. Jill also happens to have endometriosis. The daily pain she experiences is chronic and debilitating. Luckily, she is scheduled to have excision surgery in December with an endometriosis specialist. But, until then, Jill has to figure out a way to make it through her day to day until her big surgery date.

Unfortunately for Jill, her symptoms and pain are getting worse. In the past, she has preferred not to use opioids to treat her pain and declined them whenever offered, but out of desperation to continue through law school until surgery without her grades slipping, she has decided to seek pain management help. Her endometriosis specialist referred her to a pain center to help her come up with a pain management plan until surgery. It took over a month to get an appointment. Jill was then told that they would only prescribe pain medications if she participated in their pain management program. The program was five hours straight, with a minimum of one day a week and a strict attendance policy.

There was no way that this would work with Jill’s law school schedule. Plus, she was already taking part in some of the program’s recommended therapies such as mental health and physical therapy. Jill went back to her endometriosis specialist, and they referred her to another doctor. With this new doctor, Jill was told that he didn’t know how to address her case, but believed a specific medication was her best option –despite the fact that Jill already told this doctor that similar non-opioid medications didn’t work or made her feel sick. Nonetheless, Jill went through the motions and took the the recommended medication so that she couldn’t be labeled as non-compliant.

Not so surprisingly, Jill had the same side effects that the other drugs she had taken before had caused. Defeated, Jill made an appointment with yet another doctor. This time, she was told that she has tried everything that he would have suggested and that he couldn’t help her. Along the way, Jill was told by all of these doctors that she was very “high functioning,”  which alluded to the fact that she didn’t really need opioid strength pain medication to get by. Now, Jill is left to figure out what to do to get her through the next two months, and hoping she doesn’t flunk out of law school in the meantime. Jill is desperately wishing she could go back in time to when she refused prescription opioid pain medication. If she had a crystal ball to show her where she’d be today, she’d have never refused them.

Jill’s story may seem extreme, but sadly, it is not. There are thousands of Jill’s out there with a number of chronic pain conditions that fall somewhere between chronic cancer pain and five day back pain. They’re the “other.” They’re the people with endometriosis, and migraine headaches, and fibromyalgia, and arthritis, and the list goes on and on. I am sure the intent of these new CDC recommendations was not to leave patients like these feeling discouraged, hopeless, or abandoned, yet here we are, leaving the Jill’s of the world to find alternative ways to cope. Ways that may prove to be more detrimental than an opioid prescription ever would. The new guidelines claim to help improve care, and reduce risk. But for who, and at what cost?