When you hear the words “opioid crisis,” you probably think about tragic deaths from addiction. But there is another opioid crisis, one I know well: the inability of pain patients to access the medication they need to function.
I was diagnosed with primary generalized dystonia in my late teens. It’s a neurological disorder that causes involuntary movements and painful muscle spasms. I was unable to tolerate most of the medications used to treat Parkinson’s disease, which are commonly used against dystonia. The ones I could tolerate didn’t help. But for reasons doctors don’t fully understand, opioids have a dramatic effect on my symptoms. My body is not nearly as rigid and jerky. The spasms that pulled my body to the side, making it difficult to sit up straight, are gone. My fingers are no longer clenched.
But my situation has gotten more complicated. At first it was small things. In 2014, my doctor started requiring more frequent appointments to keep writing my prescriptions. I didn’t mind. Next, he decided to no longer participate in my insurance. It cost me $150 out of pocket for each visit, but it was worth it.
In 2015, the state of Alabama began sending mandatory prescription monitoring reports to physicians who prescribed patients high doses of opioids, along with a form letter encouraging doctors to carefully consider whether their patients should be receiving this dose. My doctor, who had treated me for nine years, was apologetic. I could see the sadness in his expression as he explained that he would need to reduce my dose. That first reduction was small, and I tolerated it easily. The second reduction, however, brought the return of pain and several of my dystonia symptoms — problems I had not dealt with in years. My doctor decided to put me back on my original dosage.
My relief was short-lived. A few months later, my doctor chose to leave pain management because of the paperwork and stress. What followed was the hardest time of my entire life. I had to taper my medication while searching for a new doctor. I became completely debilitated and could barely manage on my own. Pain and spasms feed on each other, creating a vicious cycle. Moving from one chair to another was once again a very difficult task. I could no longer drive the van I had worked to purchase.
I was finally able to find a doctor out of state who was willing to treat me, but many patients have not been so lucky. In 2014, I started keeping a list of pain patients who had committed suicide, unable to cope with the pain. Sometimes the list grows weekly, sometimes daily. I knew some of these people personally. Some names were submitted to me by their loved ones. Others were mentioned in the comment sections of articles or posted on Facebook. Sometimes it’s not even a full name. My list has more than 100 entries.
Children have lost mothers, fathers and grandparents. I have lost friends. Just a few years ago, discussion of suicide was rare in the community of pain patients. Now I see it on online bulletin boards, in article comments and in online groups dedicated to the subject.
As a former nurse, I never dreamed that our government would encroach to this degree on the relationship patients have with their medical providers. Because of opioid abuse, we have implemented policies that will cause physicians to abandon patients or taper medications, regardless of whether this will harm their quality of life.
I would love to return to working as a nurse, though I can’t imagine doing it now. I used to work for a hospice service. I don’t want to tell a patient writhing in pain at 4 a.m. that he will have to find a way to cope because drug policies now apply to patients with cancer.
The crisis of people in the throes of addiction deserves the time, attention and talents of health care providers and legislators. But the crisis of people in pain deserves the same.
Anne Fuqua is a former nurse in Birmingham, Ala.