Pain is pain, I thought. Wrong. Pain can be flickering, quivering, pulsing, throbbing, beating, pounding, jumping, flashing, shooting, pricking. That’s 10. I could go on and list the 69 other descriptors included in the McGill Pain Survey. The last one is lancinating. I am not making this up. I had to look it up. Lancinating means piercing or stabbing.
Because I have a chronic pain condition, back in October of 2002, I took part in a pilot medical study to research the effectiveness of biofeedback as a treatment. For more than a year, I had been waiting eagerly for the study to begin. I navigated a maze of buildings and hallways at Rutgers University to find a cold cinder block room. In that room, at a rickety desk, I completed the McGill Pain Survey, an official, standard scale of pain, as well as several other evaluations in order to compare my pain levels before and after using biofeedback. Until confronted with those forms, I had no idea there were so many dimensions to pain.
I was shocked by the list – the length, the implication, the breadth. And then I was alarmed by how many of those descriptive nuances resonated. Those distinctions were real for me. Then I thought, well, that’s interesting, but I really didn’t want to think about pain in that level of detail. I preferred to think of it as just pain – simple, plain old pain. Somehow thinking of pain in these specific terms made the pain more acute in my body. Diffuse pain in my mind would allow diffuse pain in my body. And I preferred diffuse.
I’ve been living with chronic pain for 17 years. I still have sleepless nights of pain for weeks on end that have me begging my doctor to put me into a coma. Thankfully, and likely only because I was diagnosed at a research hospital, I had access to innovative and effective methods to deal with my pain. I know I would be dead without them.
A recent report from National Public Radio noted that more people live with chronic pain than cancer, heart disease and diabetes combined. Written in response to the media coverage of the opioid epidemic in this country, the story closely mirrored my experience and highlights the fundamental structural problems that confront those who live with pain. These hurdles need to be eliminated.
1. Health Insurance Coverage Favors Drugs
The first serious obstacle is that health insurance coverage favors drugs. Since the passage of the Affordable Care Act of 2010, some states do reimburse for other pain treatments such as acupuncture. However, patients are still incentivized to take drugs ― serious drugs like opioids ― over other effective palliatives because drugs are better covered by insurance. That is ridiculous.
Why is this? Because drug companies pay for studies in order to obtain FDA approval to bring drugs to market. Yoga therapy, cognitive behavioral therapy and meditation, once taught, are self-administered. Others like massage therapy and acupuncture are services and not products with intellectual property protection. That means these treatments do not provide long-term profits and can not be patented for lucrative returns.
This dysfunctional landscape means that alternatives to drugs are not studied as thoroughly. Universities, foundations and the National Institutes of Health must step up. They try and do. However, the resources for such research are a pittance in comparison to those of drug companies.
In addition to a lack of funding, many of the alternatives to drugs are more difficult to study because they are so individualized. What works for one may not work for another, and so creating standardized “controls” is difficult if not impossible.
Finally, I’d like to point out that we don’t have a Federal Non-Drug Administration to legitimize and validate other remedies. And until that happens, health insurance companies will absolutely resist reimbursement or coverage of those costs unless forced to legally. (Good luck with that.)
Consider the high costs of living with illness. According to the Journal of Managed Care Pharmacy, in a study published in 2012, patients with severe fibromyalgia incur $9,316 per year in direct costs for medical services and $33,140 per year in indirect costs including productivity losses, absenteeism, changes in employment status and unpaid informal care. A study done in the state of Georgia in 2011 estimated that persons with CFS/ME spent $2,342 more annually on direct medical costs than healthy individuals did, and that did not include extensive non-direct costs. In addition, Lyme Stats says most Lyme disease patients spend on average $53,000 a year on out-of-pocket costs.
No doubt part of these increased expenses are the out-of-pocket costs for chronic pain. Effective pain treatments that are not in pill form cost patients more. All because the incentives are skewed towards Big Pharma.
2. Most Doctors Unaware of Effective Alternatives
The NPR story rightly noted that clinicians have no idea how to treat pain other than prescribing drugs, and that is the second obstacle. The doctors on the front lines are not familiar with options. Drug companies employ huge sales forces (and techniques) to make sure doctors know about drug solutions.
In contrast, the only avenue to learn of other effective treatments is through conferences, medical journals, and professional associations. But frankly, that learning takes more effort and volition on the part of very busy and overworked doctors. Drugs are what are in their repertoire.
So drugs are researched more, marketed more, prescribed more. As a result, drugs are the cheapest way for with those with chronic pain to live and function. But very few painkillers are meant to be taken long-term. And now, because of media reports on opioid abuse, the mood is to restrict access to them, even for those who really need pain relief.
Of the six alternatives to drugs mentioned in the NPR report, I do all six. All of them. They are yoga, meditation, biofeedback, acupuncture, cognitive behavioral therapy and alternative physical therapy like myofascial release.
Because I was diagnosed at a research hospital that was ahead of the game, I was introduced to most of these early on while they were relatively new. That was over 15 years ago. From the beginning, my pain treatment included cognitive behavioral therapy, biofeedback, yoga and mediation. I have since added acupuncture and myofascial release. I simply would not be here without them.
3. The Overkill of Painkillers
The last obstacle is that painkillers often simply don’t work or don’t work well enough. I would take painkillers if I could. My insurance covers the drugs. And truly, morphine or other opioid analgesics are amazing to treat pain after surgery, to treat the pain of terminal cancer patients, or to help with childbirth. But for chronic pain, the drugs I have tried do not work. And I have tried them all, more than once (just in case the bad experience was a fluke). I would take them if they did. And it would save me a ton of money.
The painkillers either don’t work at all or they debilitate me. The side effects are often intolerable. Specifically I get so dizzy that I can not stand without hanging onto a wall. I can not watch television ― especially reality television with those quick cuts between scenes. I can not scroll through my iPhone because it makes me throw up. Sometimes I throw up anyway. At the worst of it, I have to lay very still and not move at all for hours until the drug I tried out of desperation wears off. That is the worst of it. Even at best, the drugs do not eliminate the pain. They just do something in my head so I do not care about the pain.
So while it is cheaper to take painkillers, for many, including me, they are either not effective or actually harmful. The non-drug pain treatments and therapies cost more. They cost much more without reimbursement ― for some, up to tens of thousands of dollars a year. They work. Insurance just does not cover them. And the majority of Americans can not afford them. This is so wrong.
Dr. Lonnie Zeltzer, of UCLA’s Integrative Pain Clinic, said to NPR, regarding chronic pain, “We don’t know how to treat it as a country. We don’t treat it effectively.” She is so right.
Listen to the full National Public Radio report here.
Cassandra Marcella Metzger, JD, MA, RYT is the creator and founder of Wellspring Stones ― the online oasis for those living with illness. After she struggled to find accessible and applicable help on how to live well with illness, she decided to prove that living well while ill wasn’t an oxymoron. She advocates to give voice to the shame and suffering of those who are chronically ill and struggling without help, without resources and without attention. She designed the 21 Day Wellspring Stones Celebration to inspire you to start taking small and strategic steps towards living easier and to mark the official launch of Wellspring Stones on August 16th, 2016. You can join anytime and find out more here. To read my other Huffington Post posts click on my profile above.