Perhaps this was intentional, as these two worlds often intertwine.
Many rheumatoid arthritis (RA) patients are painfully aware of the need for opioids in disease management.
However, due to stricter regulations, new legislation, and an ever growing epidemic of opioid abuse, patients with RA and other chronic pain issues are facing more difficulty when it comes to getting the medications they say they need.
Arthritis Today Magazine did a lengthy story in their October 2016 issue featuring the pros and cons of opiates. The article expressed a concern over the growing epidemic of opioid addiction, abuse, and overdose.
The article was applauded by some patients and patient advocates on various online forums, while it left others thinking it was too critical and painted a negative portrait of people with chronic pain who rely on painkillers.
The problem, it seems, is that many people do, in fact, misuse these highly addictive drugs. People can start with a legitimate need for painkillers and become physically addicted.
This can lead to abuse and even an overdose. It can also lead to desperate people resorting to other, more dangerous options, such as heroin, to feed the addiction, when all they were looking for to begin with was a way to alleviate their ongoing pain.
However, not all patients fit into this category. In fact, most chronic pain patients do not.
Opinions on opioids
In an online survey conducted on the Arthritis Ashley Facebook page, 85 percent of respondents said they did not want to regularly use opiates in the first place but felt they had no other option.
“When pain becomes unmanageable,” wrote Bethany Mills of Utah, “you do what you can to survive.”
Some people with chronic pain said they feel like they are out of options and are aware of the risks of opioid use, but they would still choose to use the drugs to relieve the disabling pain they deal with on a regular basis. They often are not offered other alternatives to alleviate their pain or other methods have failed to help them.
“I have tried almost every way possible to deal with my pain,” wrote Sarah Kocurek. “But there are days the swelling in my hands is so severe that it cripples me, making me nauseous or cry out in pain. And then I have only one option left, my opioid pain medication.
Some doctors prescribe painkillers without first exploring other options like physical therapy or non-opioid painkillers. This can increase a patient’s tolerance, causing them to need higher or more frequent doses.
It can also cause hyperalgesia. This condition is a heightened pain sensation, sometimes caused by opioid drugs. Instead of decreasing pain, the opiates can, after high-dose or long-term use, increase levels of pain in some people, causing them to want — or need — even more drugs.
According to the website for the nonprofit Institute for Chronic Pain, this can occur because “the nervous system can become abnormally sensitive to even certain medications used to alleviate pain. That is to say, opioid medications can become the stimuli to which the nervous system becomes abnormally sensitized. It can occur for a number of reasons, but one of them is when the use of opioids, particularly high doses of opioids, occurs over a long period of time.”
New guidelines and restrictions surrounding the prescription process are intended to make opioid use safer for patients. The latest guidelines from the Centers for Disease Control and Prevention (CDC) do note the difficulty of treating chronic pain.
According to an abstract published in the Journal of the American Medical Association (JAMA), the CDC notes the importance of the guidelines, stating, “Evidence of long-term efficacy of opioids for chronic pain is limited. Opioid use is associated with serious risks, including opioid use disorder and overdose.”
The CDC notes that doctors need to do a better job of explaining potential side effects to patients, and to really weigh the risks versus the benefits in prescribing this class of drug.
According to their guidelines, “Non-opioid therapy is preferred for treatment of chronic pain. Opioids should be used only when benefits for pain and function are expected to outweigh risks.”
The regulations can sometimes make it difficult for patients with chronic pain disorders like RA to get these mediations regularly and in a timely fashion.
Aside from the hoops that patients may have to jump through to obtain a legal prescription from their medical doctor, there is also the stigma they face from the general public.
Erasing the stigma
People with chronic pain know the look.
The one they sometimes get when they seek treatment or pick up medication.
“I’m sick of being labeled as a drug-seeker or treated like an addict every time I head to an emergency room or a pharmacy to manage my pain. Being young and female does not help, and I know other RA patients experience the same feelings,” Mills said.
Kocurek has had similar experiences.
"I am one of the youngest patients my rheumatologist has,” she said. “And when I have to go into my 90-day appointments to refill my medications, I am constantly looked down upon. As if I am faking my illness to score a fix. And going to urgent care or the emergency room can be more difficult. You aren't believed. You are all but called a junkie.”
These issues were addressed at a recent Stanford MedX panel that discussed the topic of opioids from both patient and practitioner perspectives.
However, Britt Johnson, the patient on the panel who represented the chronic pain community, detailed on her blog that she felt overlooked.
Stanford Medical School did tweet out one of Johnson’s quotes from the panel. In it, Johnson said, “Pain is not politically correct. The media tells me that all opioids are all bad. The media forgot about me.”
Johnson’s stance is that the media oversimplification of opioid use and abuse is making it look like all opiate users are abusers or stereotypical addicts.
Many times, patients are desperate for relief, access, and recognition. Many times, doctors feel obligated to help their patients feel better and have a better quality of life. Some of these doctors even continue to prescribe opioids to patients after an overdose.
But doctors, lawmakers, police, and politicians are also dedicated to protecting vulnerable populations from becoming addicted to drugs.
However, many patients will say that without opioids, their lives are already ruined.
“The pain of rheumatoid arthritis and dermatomyositis is crushing, so I use these meds because I have no other option if I want to survive,” Mills told Healthline. “But I do acknowledge that some people might misuse pain pills and that they can sometimes be unsafe.”
Other patients agree that there are pros and cons to both opioid use and opioid regulation. Some cite the fear of being stigmatized or judged as to why they won’t use them.
“I am 54 and have had a diagnosis of RA for seven years,” said Marilyn Swallow of California. “I have never taken painkillers regularly, except over-the-counter drugs for RA. I have taken opioids following multiple surgeries, but I don't like the way I feel on them or the stigma attached to the use of opioids.”
She continued, “I, however, don't judge others for using opioids, nor do I push my personal experience of choice on others. It's tough when another patient asks what I use for pain, and I explain my experience. I think people automatically go on the defense to justify their use of opioids. It's a fine line to walk.”
Kat Nowlin from Texas was diagnosed with juvenile idiopathic arthritis (JIA) before she was 2 years old. Her JIA has since progressed to a severe form of adult RA.
“If I had to say a pro about legislation, it is the fact that there's a crackdown on the illegal nonmedicinal use of opioids,” Nowlin told Healthline. “A con for me would probably be the difficulties of having to get a prescription from the doctor in person each time it needs to be filled. This can delay actually receiving the meds as needed on the schedule for that medication. For me they helped me with the breakthrough pain and took the edge off the major pain. But in the past six months I had to get taken off of them due to a liver enzyme issue.”
What can be done?
Despite the risks of addiction, doctors note there is a need for both the use of opiates and the restrictions surrounding them.
At a Stanford MedX panel last month, Dr. Jeanmarie Perrone, professor of emergency medicine at the Hospital of the University of Pennsylvania noted, “I need good pain management to work in the emergency room. We need these drugs. We just need to be conscientious about it.”
Patients don’t disagree with the need for careful prescription and conscientiousness surrounding the prescription of these drugs.
“Of course, no decent human being wants other people to become addicted to opioids, or heroin, or to overdose and die,” said Mills. “But, at the same time, we don’t want restricted access to these medications that alleviate our pain, just because of the fear of that happening.”
The fear, however, is rooted in reality.
The issue that many RA patients have when discussing opioids is that they feel their legitimate need for the drugs is lumped in with those who use and abuse these drugs recreationally.
The message that patients want to get out is that many people with chronic pain legitimately need these drugs and are not using them “for fun” or for a quick high.
And patients just want to be heard. At the MedX panel, Johnson said, “I’m sitting here and the discussion about the pain crisis is happening around me … and it could be happening with me. We could be having a real discussion here.”
There may be hope on the horizon. A 2016 study detailed research that could perhaps lead to the “perfect” non-opioid painkiller.