Like many other people who have rheumatoid arthritis, I live with high levels of chronic pain every day.
That sentence doesn’t really tell you anything, does it? Sure, it says that I have RA and therefore experience significant pain on a daily basis, but it doesn’t tell you what it’s like to live inside that reality. The stigma and misperceptions that surround RA are fed by other social pressures. They color how we are viewed, like a filter lending a fractured view. Here, I will address two of these filters: misconceptions about the severity of RA pain and myths about opioids.
The Myth of Minor Pain
RA is "just arthritis," isn’t it?
This myth is fed by the perception that all 100 types of arthritis are alike, resembling a mild case of osteoarthritis. Moreover, that arthritis is more of an inconvenience, at most causing the "minor arthritis pain" that is so often mentioned in commercials for over-the-counter painkillers.
Nothing could be further from the truth.
A healthy joint has cartilage acting as a cushion between the ends of bone that make up a joint (think, for instance, your upper and lower arm bones). RA inflammation creates swelling within the joint and destroys that cartilage until there is no cushion. Both the pain of inflammation and fluid in the joint (active RA) and the pain of two bones grating against each other as you move (RA damage) can be excruciating.
RA pain is a monster that eats your life. RA pain is all-encompassing, wrapping you in a tight embrace that never lets go. In my book, 7 Facets: A Meditation on Pain, I describe it like this:
"It starts in one place and then it moves, creeping through your body, leaving a thorny trail of interconnected feeling. It links painful spot to painful spot to yet another painful spot, and by the time it is done, you are a burning network of pain. Everything hurts. Every muscle, every tendon, every joint is caught in a spasm. It is a paroxysm of stinging, throbbing, all-encompassing sensation."
RA pain, whether from active inflammation or damage to a joint, is very far from minor. In fact, some doctors have stated that the pain of moderate to severe RA is similar to the pain of bone cancer. I believe that sharing that information could do much to make others understand our reality.
The Myth of Opioids
Opioids are addictive and should be avoided as much as possible. Right?
There was a time before I found effective treatment, when I started every day crying in the shower. My doctor gave me a prescription for codeine and I stopped crying first thing in the morning. When I told everyone I knew about this miraculous change in my life, they immediately expressed concern that I would get addicted to the medication.
There is a big difference between being dependent on a medication and being addicted, but little awareness of what each means. Therefore, people often mistake physical dependence for addiction. The lack of clear definitions and widespread understanding of these differences contribute to the myth that if you take opioids, you will inevitably become addicted.
And it is a myth. One review of studies showed that, when prescribed and taken correctly, opioids result in addiction for one quarter of one percent of the people taking them (1). Another review of studies included people who have experienced substance addiction in the past, which is the greatest risk factor for addiction. The risk rose to three percent (2). This means that over 97 percent of people who take opioids do not get addicted
Despite the facts, the War on Drugs is increasingly targeting pain medication, effectively becoming a war on pain management and the people who need it. Doctors are pressured to not prescribe opioids, leaving people with high levels of chronic pain without treatment. Laws are enacted to limit the number of such medications any one pharmacy can carry, preventing people with legitimate prescriptions from getting the medication they need to function. Myths are the basis for these efforts that restrain effective treatment, not facts. Opioids are a tool and only that, not an inherently evil substance.
Not all people with RA will require these medications to manage their pain. For those who do, opioids are essential to being able to participate in family activities, at work, and in the community, instead of being housebound in excruciating pain. Access to pain management is a fundamental human right. A better understanding of the facts will help more people live better lives.
(1) M. Noble, et al ., "Long-term opioid management for chronic noncancer pain," Cochrane Database of Systematic Reviews 1 (January 20, 2010): CD006605. 42 The National Opioid Use Guideline Group, Canadian Guideline for Safe and Effective Use of Opioids for Chronic Non-Cancer Pain (2010): 10.
(2) The National Opioid Use Guideline Group, Canadian Guideline for Safe and Effective Use of Opioids for Chronic Non-Cancer Pain (2010): 10.
Lene is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain. Her new book is 7 Facets: A Meditation on Pain. Her personal blog is The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.