Someone I care about asked me once what it was like to be in chronic pain and I remember giving them this descriptive explanation that was almost on the verge of being theatrical because I wanted to convey in the most explicit way that it was truly awful, but mostly I wanted them to believe me. As my sero-negative RA advanced, I was experiencing pain like I’d never had before in my life. As a nurse, I couldn’t believe that people endured pain levels that were ranked at a 7 or 8 on the 0-10 pain scale with 0 being no pain and 10 being the worse pain you’ve ever experienced without treatment. Because pain is not a primary symptom of RA I was unprepared for the tenacity of the pain and I felt isolated. I quickly learned through online communities of RA patients that I was not alone in my suffering. I felt validated, then I was outraged because physicians seem to dismiss pain as a primary symptom of rheumatoid arthritis. I couldn’t understand how this could happen because after pain had robbed me night after night of restful sleep, I was so miserable that I just wanted to close my eyes and not wake up. I wasn’t suicidal by any means, but I just didn’t want to live with pain anymore. When I initially addressed this with my rheumatologist, he said, “I don’t treat pain. You will need to see your primary care physician or a pain management specialist”. As I turned back to the online community I found that many patients were reporting that their rheumatologist would not address their pain and as a result, the patient felt that they should just “suck it up and deal with it”. As a nurse, I couldn’t believe this was happening. As a patient, it was unacceptable. I was astounded by the misconception that this type of pain was being dismissed as “just arthritis”.
In recent years there have been an increase in reported cases of prescription drug abuse. This problem is what is driving more and more physicians from prescribing narcotic pain relievers. We live in a era where malpractice law suits are common. Physicians are reluctant to prescribe narcotics for patients due to the potential for drug overdose or addiction. As a result pain is being under-treated by healthcare providers. Physicians would rather ignore treatment of chronic pain associated with a illness like RA than have to adhere to the guidelines for dispensing narcotics and to bear responsibility for any prescription drug diversion or abuse. In fact, it has been recommended that the FDA restrict narcotic prescriptions t0 90 days for non-cancer pain. (See: http://articles.latimes.com/2013/mar/26/local/la-me-rx-label-20130327)
Chronic pain is a medical diagnosis sometimes called CPS (Chronic Pain Syndrome) and is defined as pain that is constant in nature that has lasted more than three to six months. (See: http://emedicine.medscape.com/article/310834-overview) As rheumatoid arthritis advances to the moderate to severe stage, chronic pain is a reality. As I began treatment with biological agents to slow the progression of RA, I had false hope that biological agents would take the pain away. In retrospect had I obtained good pain management, I may have had a more realistic view of what the biological agent could do for me. For 2 years my focus was treating my pain and doing whatever was needed to make the pain go away; however, this was not the rheumatologists goal. His primary goal was to put the disease in remission. Please let this be a lesson to anyone who is dealing with pain as a chief complaint with RA. Make sure your doctor hears you and treats the pain so you can spend 6-8 months waiting for a biological agent to show signs of improving your condition.
I was three years into my diagnosis when my rheumatologist finally listened to me. I remember sitting in his office and crying to the point I could not stop as I told him how sleep deprived I was and that when I did sleep my brain tried to comprehend the pain with vivid nightmares of being in a car accident so severe, the car was crushed around me. During the time this rheumatologist treated me I had gone through 4 biological agents and 3 DMARD treatments. No longer able to work, I had to file disability and was grieving the loss of career and financial security. I felt like a shell of my former self. It was only then, that this doctor relinquished and told me about a narcotic pain patch that could be worn on the skin for 7 days at a time, that would be a source of continual pain management; however, he would not prescribe it. This rheumatologist and I have parted ways, but my general practitioner did prescribe the medication. Now that my pain is managed, I am better able to cope with the debilitation of RA. Occasionally I have acute pain that breaks through the coverage of the pain patch, such as when I go into a flare, but I have medication that covers that now. My life made a 180 degree turn once I got the pain under control. I suffered needlessly for three years, delaying my treatment plan and perhaps overlooking some treatments that may have been a choice because my goals were not congruent with my rheumatologists treatment plan. I find myself starting over now with a new rheumatologist and looking realistically at treatment now that I’m not looking through the lens of pain.