Published with Open Mic Rochester on Nov. 7, 2017. 

Note: This is the second article of in series on chronic pain. 

In the public discussion on opioids, people with chronic pain are often forgotten. And that can be deadly.

There aren’t any firm statistics on the exact number of Americans with chronic pain who are suicidal or commit suicide. But it’s a well-known occurrence among those in the community. Joan Hall, a Fibromyalgia Association of Rochester N.Y. Support Group Leader, knows of several.

“She was crying and saying, ‘I went to the emergency room, and they just sent me away. I feel like I’m having a heart attack, and they won’t see me. They just say I’m drug-seeking,’” Hall remembered of one young girl who visited the group years ago. “She was in so much pain; she was talking about suicide.”

In the last several months, the opioid epidemic has dominated news headlines. And in October, President Donald Trump declared it a national Public Health Crises. Legislators and governors have used legislation, committees and public discussions to curb addiction and many are also looking to clamp down on suppliers.

The National Institute on Drug Abuse estimates 2.1 million Americans have a substance use disorder, and the New York Times estimated between 59,000 to 64,000 people died from a drug overdose in 2016 based on data they compiled, but official numbers won’t come until December.

There’s no denying there’s an issue.

The unintended consequence is the challenges it creates for those who take opiates to manage debilitating chronic pain to function daily.

Particularly, for those trying to fill a first-time prescription for an opiate since the issue has become hot button, Hall explained. She was diagnosed with Fibromyalgia, a disease that affects approximately 5 million Americans over age 18, according to National Institute of Arthritis and Musculoskeletal and Skin Diseases. It’s symptoms include musculoskeletal pain, fatigue, memory and mood issues.

Hall knows firsthand the pain that awaits her without medication, and it’s miserable. She doesn’t take an opioid currently, electing instead for an anti-inflammatory drug prescribed by her doctor, but she has in the past. The opioid worked for a while, but had inconsistent results.

“If I don’t have (my medication) – this is the more important thing to remember – it’s not a matter of being in pain,” she said. “It’s a matter that I can’t walk within a short time.”

This is common among people who have chronic pain, which is estimated to affect around 100 million Americans, and according to U.S. Pain Foundation President and Founder Paul Gileno, a lack of pain relief can lead to thoughts of suicide.

“We see suicides go up, we see people in pain, we see people doing things they wouldn’t normally do to get medicines,” Gileno said.

Gileno founded the U.S. Pain Foundation in 2007 as a support group after he severed a vertebrate while at work years before, snapping his spine and putting him in chronic pain. The organization grew quickly and became national in 2011.

“I think when you’re restricting any kind of medicine, you’re hurting the people who really need that medicine,” Gileno said. He said he knows there needs to be restrictions to counter addiction but warned we should think of all sides. “When we put restrictions on the number of pills people can receive or the number of times they can see a doctor, you’re hurting someone who has a legitimate need for that medicine and you’re adding that cost for that person.”

One example of these restrictions is the CVS 7-day rule for opioid prescriptions. The company policy specifically affects those new to pain therapy, requires immediate-release formulations before extended-release opioids are dispensed and will reduce the amount of opioids the pharmacies carry.

It will go into effect in February.

Another is the CDC guidelines that went into effect in 2016, which discouraged primary care doctors from prescribing pain medication and caused pain doctors to announce their decision to stop prescribing them as well, according to reporting by Pain News Network.

“The biggest problem we have is people assume because you’re taking a pain medication that you’re an addict or that pain isn’t real,” Gileno explained. “If you have a war on opioids, you automatically assume people taking opioids are addicts.”

And he says that just isn’t true. Glenn said of the 20 percent of Americans who face chronic pain, few are addicts. Others rely on other prescription painkillers, over-the-counter medication, alternative methods like essential oils or acupuncture and any number of other pain relief options available today. Even those who rely on opioids turn to other pain relief methods, like Calvin Eaton, founder of Rochester’s 540WMain and an Ambassador for the U.S. Pain Foundation.

Eaton was diagnosed with fibromyalgia in 2010 after spending months dealing with chronic fatigue starting in fall 2009.

“Someone like me who takes an opiate every day to survive is very different from someone who is suffering from the illness of addiction,” Eaton said.