(The April 1 deadline to provide comment on the recommendations of the U.S. Pain Management Best Practices Inter-Agency Task Force is drawing near. Angelika Byczkowski is a frequent contributor to the National Pain Report. Here’s what she wrote in the public comment section for the Task Force to consider)

I’m writing to urge that you please don’t let the government set standard opioid dose limits for individual patients. Opioids are my only means of relief from a painful connective tissue disorder.

Pain is, by biological design, the most forceful and unpleasant sensation a human body can experience. As a primal alarm of danger and impending death, it demands immediate attention and action. Pain is the most powerful persuader and has been used throughout human history to force people to act against their will by torture.

And when this powerful sensation becomes relentlessly constant, when there’s no escape from this pain, no hope for its easing, no end to its presence, life can become too painful to live. (as evidenced by the increasing numbers of suicides by pain patients cut off from their pain relief)

I inherited a permanently painful disabling disorder, Ehlers-Danlos Syndrome, and have been taking high doses of opioids for over 20 years. Countless other treatments, therapies, and medications were ineffective or far too expensive. For me and many others, only opioids provide effective pain relief.

Here is a list of non-opioid therapies, like those you recommend, which I’ve tried and found ineffective:

interventional procedures: nerve blocks, epidurals, and even surgery

biofeedback

physical therapy

massage

chiropractic

acupuncture

drugs used for Fibromyalgia: Lyrica, Neurontin, Cymbalta, Savella, Soma, Flexeril

psychiatric medications: antidepressants, antiepileptics, mood stabilizers, even antipsychotics

Stanford Pain Management Program

psychotherapy, including an addiction counselor who determined that I am not an addict, just a person in pain

Enforcing arbitrary opioid dose limits condemns many of us to live the rest of our lives tormented by our pain, which certainly constitutes a “cruel and unusual punishment” for pain patients.

The CDC Guideline was never intended to set specific dosage limits, yet it’s being used to legislate absolute rules for what should be individualized medical decisions. It is biased, based on admittedly manipulated data (overdoses were counted multiple times if multiple drugs were found), overlooks essential facts about opioid prescribing, and makes strong recommendations based on weak evidence.

Standard medication dosages imposed by government are inappropriate for medical practice.

Setting a standard dose for pain medication is like setting a standard time for cooking a roast without knowing the amount or type of meat (amount or type of pain) or the temperature of the oven (opioid metabolism of patient).

People have very different kinds of pain and different genetic profiles that cause them to metabolize opioids differently, so effective doses can vary by a factor of 100.

Worst of all, this effectively condemns many of our veterans to a lifetime of pain: those who fought for this country, were gravely wounded, and have permanent injuries that leave them with intractable pain. How can we force them to suffer like this?

Opioid medications are not as dangerous as rumored and do not “cause addiction”. If these medications were addictive as some claim, the millions of people who take a few opioid tablets after surgery would be addicted. This is clearly not the case.

Opioids have been used effectively against pain for thousands of years and are addictive for only a small subset of humanity, less than 5%. We cannot protect these people from addiction by forcing so many other people with chronic pain, conservatively estimated at 25 million, to live with incapacitating pain.

The frightening “opioid overdose crisis” numbers are created by adding together very different drugs, users, and motivations.

There is little overlap between legitimate prescriptions used for pain relief and illegal heroin and street drugs used for recreation. The conflated data confuses the motives of people in pain with those looking for a recreational high or staving off withdrawal.

Limits intended for one problematic population (recreational/addicted users) will strongly and exclusively impact a different and innocent population (patients with permanent pain). Overdoses are mostly from multiple drugs and illicit opioids, not from opioids prescribed to the individual and taken as directed.

The “crisis” is one of addiction, not a drug, and the results after 3 years of imposing dose limits: opioid prescribing way down, overdoses way up.

When our pain-relieving medication is drastically decreased (and in some cases stopped without notice or aftercare), we can no longer function in our jobs or family roles, we become dependent and burdensome to our loved ones, and our lives become a progression of daily suffering.

Please don’t deprive me and so many other citizens of pain relief based on an arbitrary opioid dosage standardized for the mythical “average” American.

It’s not my fault that I need opioids because I inherited a painful condition.

It’s not my fault that some people using illicit opioids are overdosing.

Why must I suffer for the self-destructive behavior of others?

To read the report and for directions on how to comment, click here.

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