Stop the war against patients with intractable pain

An open letter to doctors still prescribing opioid medication when necessary:

Thank you so much for standing up for us pain patients. My chronic pain comes from a genetic connective tissue disorder (Ehlers-Danlos Syndrome), so there is no treatment or cure for my slow, but relentless, physical deterioration as the collagen holding my body together falls apart.

I, like so many other pain patients, spent years (1982-1995) trying other therapies (yoga, acupuncture, chiropractic, diets, supplements, PT, lots of exercise) and non-opioid drugs (anti-epileptics and antidepressants) with horrible intolerable side effects.

As a last resort, I was prescribed opioids starting in 1995. They are still working, and I’m lucky to still have them prescribed. After over 20 years, I find it pernicious and purposely misleading that so many supposed “experts” say opioids don’t work long-term. Those of us relying on opioids for years and decades know that is simply not true.

Exercise and movement are so helpful for pain, but without opioids, I’m in too much pain to do such self-care. I’m lean (110 lbs.) and active (walk over 2 miles per day) because I used to be an athlete, I do not catastrophize, and I only eat healthy foods, so I’m doing all I can for myself. This would all be impossible if my body-wide pain weren’t controlled by opioids. By “controlled” I mean it’s still painful, but tolerable, to walk, do light housework and errands, care for my dog, occasionally visit a friend, and use a computer.

I used to get along with my painful condition and managed to create a life within the boundaries of my pain by using opioid medication. But as I watch legislators, administrators, and other bureaucrats impose increasing restrictions on the most effective pain medication that’s been used for thousands of years, I’m getting more and more fearful that the little life I’ve created for myself will come to an end.

There was a time when I was prescribed only 25 percent of my normal opioid dose, and I ended up living on the couch and in bed for a few months. My pain seemed to increase the longer I couldn’t exercise or move vigorously. I lost considerable physical conditioning during those months that I’ve never been able to recover, thanks to a doctor insisting “opioids are bad for you.” No, opioids are good for me because they allow me to retain some quality of life.

My life was saved by the addiction counselor I was finally sent to when she determined that I was in no way addicted, just in pain. I went to a new doctor with her statement in hand and resumed an effective dose of opioids. I know I’m incredibly lucky to have found a reasonable doctor, but I fear these impending laws against opioid use will eventually force her hand and she will have to stop prescribing me my life-saving opioids.

I say life-saving because I have learned that a life of miserable pain lying around the house is not really living, only existing. At 60, I’m prepared to leave this life when my pain becomes intolerable. At 88, my mother with the same painful genetic syndrome is only allowed enough opioids to ease her pain for two 4-hour stretches daily. The rest of the day and night her pain is literally unbearable, and she now contemplates ways to end her life as well.

I hope medical professionals like you can find a way to end this craziness of trying to prevent heroin overdoses by taking away pain relief from patients that have been using opioids successfully for years. We need someone of authority to push back against the insanity of this drug war against patients with intractable pain.

Angelika Byczkowski is a patient with Ehlers-Danlos syndrome who blogs at EDS Info.

Image credit: Shutterstock.com

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