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Chronic pain: The “invisible” disability

Sometime back in 2010, a good friend of mine from college who had since become a pediatrician posted a complaint on Facebook about “made up” health conditions. “Fibromyalgia, I’m looking at you,” she wrote. At this time, pain was more of an occasional visitor in my body rather than the permanent tenant it has since become. Still, I was offended on behalf of those patients with the disease.

Fast forward to today and my life is all about pacing. This is because everything I do — cook, sleep, work, walk — takes time. This gradual approach to every aspect of my life is not about enlightenment or mindfulness. It is about pain. Or more specifically, trying to evade or minimize it. To minimize is key because I’ve learned it can’t be avoided, at least not entirely, no matter my effort. For me, fibromyalgia became a default diagnosis — a catch-all phrase the doctors slapped on me to encompass all the aches and health complaints that had begun to persistently plague me. I received this diagnosis even as imaging showed degenerative changes and other damage in my spine and hips, even as endometriosis was confirmed to be spreading like strands of spider web inside my abdomen, wrapping its tendrils around my organs with the insidiousness of an invasive plant. When the pain reached the point of making it impossible to work more than on a very part-time basis most weeks, I began to inquire about disability. But my doctors — the same ones who diagnosed me, treated me, and viewed my MRI results — all shook their heads and refused to sign off on any paperwork.

“You don’t seem sick,” they said

This was the same line I was offered in college after extreme intestinal distress caused me to lose more than 20 pounds in a single semester. But the school nutritionist thought I just wasn’t eating enough bananas. “You have such shiny, healthy-looking hair,” she explained, pinching a lock of it between her fingers as though I were a doll on display. “People who are really sick don’t have hair like yours.” A colonoscopy showed nothing visibly wrong, so the doctor diagnosed me with irritable bowel syndrome and treated me as though I was a hopeless neurotic. “Stop being so stressed and eat your greens,” he scolded. Two years later, a laparoscopic surgery would show widespread endometriosis, a large portion of it choking my colon. Its removal eased my GI complications considerably. But by then I learned the hard lesson that doctors often erred on the side of disbelief when they couldn’t see something plainly… or even when they could.

I have heard an extensive list of reasons why I can’t be in as much pain as I say despite my test results… and besides my shiny hair, like: I am too young; I have good teeth; I’m too thin to have back problems. Yet, these haven’t granted me immunity from illness, and they have not prevented pain.

Only recently has medical research started to catch on to what patients suffering from chronic pain have long known. As reported in a New York Times Well column written by Tara Parker-Pope in 2011, a study by the Institute of Medicine discovered that pain can endure long after the illness or injury that caused its initial onset has been treated or healed, until it eventually evolves, or devolves, into its own disease. That is, pain is no longer indicative of another prognosis — it is the prognosis, and a disabling one at that.

Specifically, under the strain of prolonged pain, nerves not only become super-sensitized to pain signals, but begin amplifying them. Once these changes occur, they can be extremely difficult to undo. Meanwhile, most medical students are woefully lacking in training in chronic pain, usually receiving only a few hours’ worth in their entire education. In fact, veterinarians receive more training on how to treat animals in pain than medical doctors do for their human patients. Unfortunately, without an adequate understanding of pain and its mechanisms, many medical practitioners are quick to downplay the experience of their patients as faking or exaggerating. What this translates into is denying a disability because it is invisible to the naked eye.

Wiser doctors needed

What would help me at this point would be to have practitioners who are not only more well-versed in chronic pain, but are willing to acknowledge its disabling impacts on their patients. In other words, doctors should start believing their patients when they say they are hurting. Validation is the first step toward a solution, or at the least, toward offering alternative adjustments and treatments that can accommodate a pain patient and bring them a better quality of life in the absence of a long-term cure.

March 15th, 2017 Posted by | chronic, health, health care | No Comments

Opioid addiction: Long-term treatment for a chronic condition

In 2015, motor vehicle accidents claimed the lives of more than 35,000 Americans. Sadly, the toll exacted by motor vehicle accidents has now been eclipsed. Data from the American Society of Addiction Medicine show that more than 52,000 of we Americans lost our lives to opioid overdose in 2015. Here in the Commonwealth, the story is even more grim; even accounting for differences in average age from community to community — younger people are still more likely to be affected than older people — the opioid overdose death rate has climbed to 23 per 100,000 residents as compared to 9 per 100,000 for the nation as a whole. The causes are numerous and a subject for another day. Similarly, approaches to solve the crisis are numerous and no one solution works for everyone who decides he or she has developed an opioid problem.

Medication Assisted Treatment (MAT)

One approach to treat people who are addicted to opioids is Medication Assisted Treatment (MAT) that combines medications to treat addiction with more traditional counseling approaches. One medication often used in MAT programs is buprenorphine-naloxone (trade name Suboxone, among others). This preparation — hereafter BN — combines buprenorphine, an opioid medication with partial activity that blunts cravings, and naloxone, an opioid overdose reversal medication that discourages abuse of the medication. When we compare groups of people addicted to opioids who are treated with and without BN, we see that those who receive the medication have a significantly higher rate of remaining free of other opioids. But how long should one continue the medication? A month? A year? A lifetime? And is it safe to continue the medication? We do not have the full answers yet, but early signals from the research indicate that not only is it safe but that longer treatment is better than shorter treatment.

Long-term treatment for a chronic condition

Many in the medical community have come to view addiction as a chronic disease. And, like many chronic diseases, it is one that can be managed but not yet cured. The thinking goes that just as those of us with high blood pressure take high blood pressure fighting medication each day for years, those of us with addiction would take addiction-fighting medication every day over years. The evidence shows that long-term proper treatment for high blood pressure lowers the risk for heart attack; evidence is now beginning to grow that long-term MAT can similarly decrease risk for relapse in those with addiction. As reported in a 2008 study in the American Journal on Addictions, patients who were successfully stabilized with a short course of BN could then be switched to long-term treatment with the medication. Forty percent of patients remained in treatment at two years and 20% at five years. When we remember that nearly half of people prescribed medication for blood pressure do not take their pills, we see that people on BN are not more likely to skip their medication than are people with better-studied chronic diseases. More importantly, though, greater than 90% of urine samples from those in the study remained free of opioids other than BN.

Long-term treatment with BN works.

How do people do without longer-term buprenorphine-naloxone treatment?

It is one thing to say that someone on a medication has a good outcome, but it is something else to prove that without the medication the person would not do well. Many advocate short-term treatment with BN. Help a person become stable and then taper off the medication. We now have evidence that this approach, however well intentioned, may be misguided. A 2014 study reported in the Journal of the American Medical Association demonstrates that over half of people who continued on BN maintenance remained free of opioids compared to just a third of those who were stabilized on BN and then tapered off. Further, far more of those treated with maintenance BN remained in the study compared to those who were tapered, suggesting that people remain committed to treatment while receiving BN.

Is long-term MAT safe?

Even if many people can be helped by extended BN treatment, it is important to consider possible side effects. Though we do not know the effects of being on BN for many decades, the 2008 American Journal on Addictions study looked for but did not find any serious adverse effects on the people treated. Earlier concerns that BN could cause liver damage also appeared to be unfounded as blood tests did not show signs of liver problems in any of the patients in the study.

More research is needed, of course, but the early evidence suggests that BN can safely help people remain off unwanted opioids over the long term just as blood pressure medication can protect people from the effects of high blood pressure. That is good news because each day off unwanted opioids is a day a person can focus on improving his or her life. Of course, buprenorphine-naloxone maintenance is not for everyone, but when it works it can work well and can give people room to breathe and rebuild their lives.

References

Abegaz et al. Nonadherence to antihypertensive drugs: A systematic review and meta-analysis. Medicine, 2017.

Fiellin, DA, et al. Long-Term Treatment with Buprenorphine/Naloxone in Primary Care: Results at 2–5 Years. The American Journal on Addictions, 2008.

Fiellin, DA, et al. Primary Care–Based Buprenorphine Taper vs Maintenance Therapy for Prescription Opioid Dependence: A Randomized Clinical Trial. JAMA Internal Medicine, 2014.

Opioid Addiction 2016 Facts & Figures. American Society of Addiction Medicine.

Woody, GE, et al. Extended vs Short-term Buprenorphine-Naloxone for Treatment of Opioid-Addicted Youth: A Randomized Trial. JAMA. 2008.

March 4th, 2017 Posted by | chronic, health care | No Comments