What About Pain Patients Who Don’t Get Better?

By Roger Chriss, PNN Columnist

The standard narrative of the opioid crisis focuses on pain management run amok. From duped doctors drugging patients into dependency to pill mills pumping painkillers into vulnerable communities, the narrative assumes chronic pain is a treatable ill.

“Looking back it’s clear that using opioids to treat chronic pain — backaches, bum knees and the like — might well be considered the worst medical mistake of our era,” wrote Haider Warraich, MD, in a recent opinion piece in The New York Times.

But what about the people who don’t get better?

There is a world of difference between “bum knees” and major diseases and disorders. From ankylosing spondylitis to sickle-cell disease, sometimes the diagnosis is permanent and the clinical course is progressive and degenerative. Care for such conditions is supportive and palliative. Affected people do not get better.

This distinction, between conditions like low back pain that often improve or resolve on their own versus progressive and degenerative conditions like Charcot-Marie-Tooth disease or multiple sclerosis, is often overlooked.

Patients treated with analgesic therapy, opioid or otherwise, are often judged on their level of improvement.

“Despite the limited improvement of clinical outcomes, most patients keep their long-term opioid prescriptions. Our results underscore the need for changes in clinical practice and further research into the effectiveness and safety of chronic opioid therapy,” concludes a study of chronic pain patients recently published Pain Medicine.

Left unsaid is anything specific about the study’s 674 patients’ diagnoses or expected clinical outcome. There was a tacit assumption that the patients should have improved and stopped taking opioids, an expectation that therapy should have been restorative and not just palliative. There is also an implication that non-restorative therapy is somehow inferior and not getting better is in effect a failure.

Often, however, that “failure” is the best that modern medicine can offer. Treatment does not necessarily mean clinical improvement and sometimes it doesn’t even mean halting progression of a disease. Instead, it may be about improving patient safety, such as the use of balance training for people with Meniere’s disease or peripheral neuropathy in the feet, or about improving activities of daily living, such as the use of assistive technology for people with muscular dystrophy or Ehlers-Danlos syndrome.

The list of chronic, progressive and degenerative disorders is long. The very complexity of the human body makes for a vast number of points of failure, from genetic mutations that cause inborn errors of metabolism to immune system dysfunction causing rheumatoid arthritis or lupus. There is the aftermath of chemotherapy, surgery and trauma, too.

MalaCards Human Disease Database has almost 20,000 gene-based disease entries. The National Organization for Rare Disorders includes over 1,000 diseases in its database. Though each condition may be rare, the total number of affected people reaches into the millions in the United States.

A common thread in current coverage of the opioid crisis is that people with chronic pain can and will get better, especially if they stop taking opioids. But a recent study of patients who stopped opioid therapy shows mixed results.

“Half of the former opioid users reported their pain to be better or the same after stopping opioids; however, 47% of the sample reported feeling worse pain since stopping their opioids,” researchers found. “As the pendulum swings from pain control to drug control, we must ensure that the response to the opioid epidemic does not cause harm to individuals with chronic pain.”

There is tendency not to see chronic pain patients as individuals and to lump them all together into one group. This may explain the mixed results in many recent studies on pain management, including on medical cannabis. The patients’ diagnoses and expected clinical outcome are often ignored, which in turn leads to overlooking the value of a therapy that may seem ineffective but is actually helpful.

The reality of long-term pain management for chronic, progressive and degenerative conditions is that there are no great options. It's all trade-offs, risks and benefits, and a careful balancing of medical needs. Sometimes there is little if any improvement. But if you're facing a lifetime of chronic pain, that little bit can still be worth a lot.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.