Time to Fight for Our Rights as Pain Patients

By Carol Levy, Columnist

Where exactly do the Drug Enforcement Administration and the Centers for Disease Control and Prevention stand on working with and helping those with chronic pain, as opposed to ignoring our voices and pleas?

At the Rally Against Pain in Washington, DC on October 22, the CDC was invited to come but no representatives attended.

The DEA notifies all that they will be banning kratom because it is “an imminent public health hazard.” But after a major hue and cry from the kratom community, a decision was made to conduct a new analysis of the herbal supplement and have a public comment period.

Why is it that kratom and medical marijuana, which many patients say are effective in relieving chronic pain, are poison to the powers that be in Washington?

Is it just the result of lobbying by the pharmaceutical industry in an effort to protect profits?

Is it another jab at us because they can't see our “invisible” illnesses and disorders?

Is it a result of the media and the public not knowing or caring about our plight?

October 7 was Trigeminal Neuralgia Awareness Day. Many of us tweeted and posted on Facebook about it, but the news media for the most part gave it a ho-hum. Do they have a policy of not reporting on a disorder if they don’t think enough people have it?  

Instead, the media seems content to repeat the hysteria laden stories and recycle articles about opioid medication abuse, while mostly ignoring those who may benefit from opioids or have them as their only treatment option.

While it is scary to see headlines about banning kratom and other substances many of us use for pain relief, it is worth remembering that an FDA advisory panel in 2009 voted to ban Vicodin and Percocet, because of their effects on the liver. No such ban was adopted, but they did change the amount permitted and how you can get them.

We need to be concerned about the “slippery slope” that comes with threatened bans. Instead of reacting with fear and wasting our emotional energy, we need to respond proactively. Better to get out paper and pen, and start sending letters and emails to your representatives in Congress and the FDA, DEA and CDC.

Kratom supporters won their battle, at least temporarily. Why can’t we?

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.