What About Pain Patients Who Don’t Get Better?

What About Pain Patients Who Don’t Get Better? – By Roger Chriss – Mar 2019

In this excellent article, Mr. Chriss points out that chronic pain means life-long opioid medication, and the anti-opioid crusaders don’t like that.

The standard narrative of the opioid crisis focuses on pain management run amok.

“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.

Even with opioid medication we show no “improvement” and there is no “cure” for us, yet these are the two expected outcomes in medical studies.

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.

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

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.

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.

I previously posted about this study; you can find it at: Study: Opioid cessation and 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.

Author: 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.

3 thoughts on “What About Pain Patients Who Don’t Get Better?

    1. Alison Auclair

      Like the difference between being totally bedridden, helpless, and headed for a nursing home or being able to do all necessary self care and contributing to your community.

      Liked by 2 people


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