My Chronic Pain Story
– Doctors treated me with suspicion and accusations of addiction when I sought help for my debilitating but invisible undiagnosed pain
After a lifetime of seemingly unrelated physical complaints and inexplicable pains that kept worsening, I was finally diagnosed with Ehlers-Danlos Syndrome (EDS) at the age of 55. EDS is caused by a genetic flaw in the production of collagen, leading to connective tissue defects. Weak tissues stretch or tear, joints shift or dislocate spontaneously, and body parts aren’t held together properly, resulting in chronic pain and many other health problems.
During my forties, the pain and exhaustion from my still undiagnosed EDS worsened significantly. Sitting at a computer all day was straining joints and muscles in my low back, and even exercising didn’t help anymore. The daily pain distracted me from my work and limited my activities, so I began a very long, futile quest for a medical solution.
I went from one doctor to another and tried every suggested test, procedure, treatment, and therapy. Still my pain continued and no one could figure out why I was in so much pain in so many places. Eventually, my neurologist prescribed me opioids so that I could control my pain well enough to continue working and remain active.
By the time I stumbled into my fifties, my life was becoming unmanageable. My ever-increasing pain and fatigue took more and more activities and options from my life; I could barely function at work. Finally I couldn’t do that anymore either, even with pain medication.
Until my pain became too disruptive, I had enjoyed a successful high-tech career. I worked in the exciting and stressful IT field and spent my free time active in the outdoors. I was an endurance athlete who voluntarily pushed herself into intense pain and suffered frequent injuries from these extreme physical activities.
I rode horses in 50-mile trail races, ran off-road half-marathons in the hills, and annually bicycled four to six 100-mile day-long events in the steep coastal hills. I had always been proud of how tough I was. But eventually, the persistent and pervasive pain overwhelmed me.
After twelve years of handling my opioid pain management, my doctor retired. The neurologist I was referred to had drastically different beliefs about opioids: she didn’t want me to take them at all “because they weren’t good for me”. One after another, I optimistically pursued her alternate ideas for finding and treating the cause of my pain, but nothing helped.
When she couldn’t find the source of my pain, she eventually came to assume there was none. She began to doubt my honesty and repeatedly pressured me to stop taking opioids.
But when I finally gave in and cut back, my pain increased accordingly, both in intensity and frequency, and interfered with every aspect of my life. After a few months of virtual confinement on the couch, life no longer seemed worth living. I lost hope and became desperate, depressed, and suicidal until the intervention of a therapist convinced me to try again.
Many doctors tend to overlook or minimize their patients’ pain, and they rarely mention the damage caused by chronic pain itself. I was repeatedly told opioids are bad for me, yet these same doctors never told me about the accumulating damage to my nervous system from letting my pain continue uncontrolled.
My pain only worsened as I lost the physical conditioning I had struggled to maintain. Any sitting, standing, or upright movement would irritate nerves and trigger muscle spasms. Without opioids, I knew I couldn’t control the pain once it started, so I became reluctant to initiate any activity at all. I was housebound, depressed, and increasingly fearful of untreated pain.
Eventually I sought out a more sympathetic doctor, who now prescribes enough opioid medication to make my life bearable. While opioids don’t eradicate my pain, they dull it enough to make it tolerable. Relieving the pain also relieved most of my depression, so I can do some research and writing almost daily.
With the pain relief provided by opioids, I’m able to get out of the house and get some exercise, and I’m only on the couch a few hours a day. With my body and mind active again, I can manage my remaining pain well enough to find some enjoyment in life, be less of a burden on my loved ones, and contribute to society again.
While doctors and the public are bombarded with sensational media stories of addiction, I want to speak out and give a voice to the untold numbers of people suffering their pain in silent desperation. My mission is to refute the picture of “chronic whiners getting addicted to narcotics” and show how opioid medications can save people who suffer from chronic pain from the depression, hopelessness, and complete disability caused by untreated pain.