A Pained Life: An Open Letter to President Trump

By Carol Levy, Columnist

Dear Mr. President Trump,

I have had trigeminal neuralgia, a chronic facial pain disorder, since 1976. For the last 30 years, I’ve been able to get all of the pain medications my doctors prescribed for me, including codeine, Demerol, morphine, Percodan, hydrocodone, and even an 8-ounce bottle of tincture of opium.

For the latter, I only had to go to 2 pharmacies. The first one didn’t carry it. The second store gave me the bottle with no questions asked.   I was trusted. My doctor was trusted. My doctor trusted me.

Many of us are now losing our doctors, who are fearful of being raided or arrested by the DEA because they prescribe opioids. Pain sufferers who were once able to get out of bed in the morning to work, watch their kids, and be a part of the world are joining the ranks of the disabled because opioids are being reduced or withdrawn completely.

Often patients get little or no warning when their pain management doctors decide they can no longer treat them.  Many doctors have closed their doors or decided not to prescribe opioids, no matter what the patient's condition or if they benefited from them. Often there is no rhyme or reason for this abandonment, other than fear of the DEA.

The Justice Department, CDC, VA and other federal agencies continue blaming patients and physicians for the opioid crisis, when the true “epidemic” involves illicit fentanyl and heroin. It has little to do with prescriptions.

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This blaming of patients and pain management physicians has caused untold additional suffering.  The worst part is the many anecdotal stories of patients committing suicide because the opioids that were helping them are no longer available in the same dosage, if at all.

The damage is not just physical from the increased pain, there is psychological pain as well.  Sources that once may have been a comfort become accusers.

Patients tell story after story: “My family now calls me an addict because I am on opioids.”

Or they fear letting their friends know they take opioids for pain: “Then they’ll think I am an abuser or an addict.”

Yes, some doctors overprescribe and some patients abuse their opioids.  But they’re a small number. We don't sell our prescriptions and we don't give them away like candy.  We take them because they help our pain.  Often, it is the only treatment or option left to us.  We would be fools to give away, sell or abuse that which is helping. 

It is time, past time, for the "compassionate conservatism" of the Republican party be put into use. And Democrats need to show that the compassion they talk about is real.

We have enough trouble dealing with our physical pain. Please stop making it worse by taking away our medications. Let our doctors doctor us, not the government.

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Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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