Where Are the Voices of Pain Patients?

By Maureen Wilks, Guest Columnist

It seems that every day there is another news item on either prescription drug overdose deaths or the rise in heroin overdose deaths.  These stories tug at our hearts, the heartbreak of the loss of a vibrant teenager or young adult to prescription drugs and/or heroin.

But where are the stories of the pain patients? Where is the voice of my husband who lived stoically for over twenty years with chronic pain? He bravely kept moving forward always hoping for the pain to abate. He tried all the treatments, countless treatments over endless years. Multiple physical therapists, acupuncturists, chiropractic adjustments, massage, herbal remedies, herbal wraps, yoga, meditation and prayer. But his pain persisted.

He took all the non-narcotic medication prescribed. None helped with the pain, but the side effects added insult to his pain. Some made him feel like a zombie, not himself. Those I made him stop.

Some made him sick to his stomach, others he listed to the right, and a few made ringing noises in his ears and brain. One had him sweating so much that by morning his pillow was wet. Many of them left him feeling zoned out, listless and mentally uncomfortable, and all the while the pain continued, poorly managed, becoming its own disease.

Finally a doctor listened to his life story and prescribed opioids, along with physical therapy. Over the following months his pain backed down, and his life was bearable, and he moved back into the world to participate with friends and family; to go for walks and camping trips that had become impossible to bear.



And then we read of research, or lack thereof, that concludes opioids do not work on long term chronic pain. I think of my husband and all the patients I have met over the past ten years as an advocate for chronic pain patients in New Mexico and I want to scream

How can you make such broad sweeping statements? How can you ignore the voices of patients whose lives have been transformed by opioids and have lived with them for many years? How can you place all chronic pain patients into one simple neat little box, wrap it up and throw away the key for a chance of happiness for intractable chronic pain patients? 

Because this is exactly what the latest guidelines from the CDC will do.

When dosing guidelines are implemented, even if you acknowledge the exceptions simply from a legal perspective, it will be a brave doctor that will prescribe above the guidelines. Because if anything were to happen to a patient under their care and they were not following the guidelines, they will face an uphill battle in the law courts of this country. And they know it, and so they will cut back, and patients will be abandoned.

The thrust of all the current research is to come up with as many reasons not to prescribe, while all the time avoiding the number one reason to prescribe, which is to manage pain. Hyperalgesia, low testosterone, constipation and the list goes on. But let’s be honest here. Every drug on the market can have some pretty awful side effects. Just read the list on the information sheet. My husband experienced many of these firsthand, taking the non-opioid anti-depressants and anti-convulsants. It is estimated that NSAIDS kill 16,000 patients a year.

When my husband’s pain was managed, he applied a testosterone cream, and ate a high fiber diet to keep regular bowel movements. And yes, our sex life may have diminished; we always had a great intimate relationship, kissing, cuddling and abundant laughs. But when his pain medication was abruptly taken away in 2011, pain became the overriding aspect of his life. It impacted our relationship so much more; pain overrode all desires.

In 2012, my husband was diagnosed with a choroidal melanoma in his left eye. As we waited to talk to a surgical oncologist at UNM Cancer Center, I picked up a booklet published by the National Cancer Institute: Support for People with Cancer-Pain Control. It states the following about Cancer-Pain Control:

“Over time, people who take opioids for pain sometimes find that they need to take larger doses to get relief. This is caused by more pain, the cancer getting worse, or medicine tolerance.  When a medication doesn’t give you enough pain relief, your doctor may increase the dose and how often you take it. He or she can also prescribe a stronger drug. Both methods are safe and effective under a doctor’s care.”

No one disputes the effectiveness of opioids in the treatment of acute pain, hospice, palliative and cancer pain. My husband did not have pain associated with his eye cancer, so he could not be treated under their pain guidelines. Radiation treatment did not stop the tumor's growth and he had to have his eye removed. No other cancer was detected in his body.

In reality though the cancer had already spread and two years later by the time two large tumors were detected in his liver, his life of suffering was almost over. In the last five weeks of his life he was given the much needed drugs to manage the pain that was still throbbing at the base of his neck and had now spread to his liver. The last two years of his life were quite frankly miserable, and this sweet gentle man deserved so much more.

Addiction is a serious concern and does need to be addressed. I believe training and education on opioid prescribing, and a strong mental health component are absolutely essential in treating chronic pain patients to prevent addiction from happening. Researchers need to recognize that chronic pain encompasses a multitude of diseases, injuries and mental health issues, and lumping broad groups together is poor science.

Reducing overdose deaths is not quite as simple as reducing access to prescription drugs. If it were, then there should be a correlation between overdose deaths within a state and the amount of opioids being prescribed.

New Mexico ranks number two in overdose deaths, but only 22 when it comes to prescribing (1 being lowest, 50 highest). I live in a county where 27% of the population lives in high poverty; defined as one in which 20% or more of the population has lived in poverty for 30 years or more. 44% of families had parents without full-time, year round employment. New Mexico ranks 49th to 50th for alcohol related deaths.

We have a fragile population and understanding and treating chronic pain within this population requires careful management and better access to mental health care. At the same time, we cannot and should not put limits on the use of opioids for treating pain patients, but need another layer of education, safety and adherence to both patients and prescribers.

The hundreds of thousands of chronic pain patients living in America deserve better than what the CDC guidelines propose.

Maureen Wilks is a Senior Geologist, and Head of Archives and Collections at the New Mexico Bureau of Geology and Mineral Resources.

Her husband Bob Macleod lived with chronic pain for over 20 years before his death in October 2015. Maureen is writing a book about their experiences, “A Pain in the Neck: The impact of prescription drug abuse on the treatment of chronic pain patients in America”.

This column is republished with permission from Dr. Jeffrey Fudin’s blog.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

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.