My Three-Decades-Long Journey Through Non-Opioid
Pain Treatments, Therapies, and Medications
The first sign of my chronic pain was an increasingly annoying backache in 1982, which kept worsening over the next decade and a half until it became almost disabling. By then, I was also beginning to have sporadic pain in my hips, knees, shoulders, upper back, and neck. In 1995 my neurologist started me on opioid therapy so that I could keep working and stay active.
I started taking opioids so I could keep working, remain active, and continue my search for the cause of my pain. I had no idea my pain would never be cured.
From 1982 until my diagnosis in 2011, I did as the CDC opioid prescribing guidelines now suggest and tried many medical and alternative treatments, therapies, and medications to ease my pain. I spent thousands of dollars on treatments that were not covered by insurance, but none were effective.
As it became more intense and frequent, my pain prevented me from being “myself”: athletic, outdoorsy, smart, and always busy. My desperation grew with my pain, and I became willing to invest whatever money I had to find a way to ease it.
I assumed that once we knew the cause, whatever was causing my pain could be fixed. It never occurred to me that it would not be treatable and that my pain would be permanent.
Below is the story of my journey to find relief from my pain through non-opioid medical treatments.
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For many years after 1982, my increasing pain was mostly in my low back, so I and my doctors always assumed I had a back problem. I subjected myself to all kinds of interventional procedures: nerve blocks, epidurals, and even surgery to “fix” it. I experienced some dramatic side effects, but no pain relief.
I did my own research and found out about biofeedback, which I believed would definitely help my pain. Unfortunately, my insurance would only pay for a few sessions, and that was not enough to make any changes.
I was enthusiastic about and tried physical therapy multiple times, but the exercises they prescribed were either ineffective or downright damaging. I didn’t know I had EDS, and the therapists didn’t notice it either, so the exercises they gave me weren’t modified for people with EDS who have to be careful which muscles are pulling on what.
In 2001 I was diagnosed with Fibromyalgia, mainly by a process of exclusion because they couldn’t find any other reason for my pain. But that did not explain why I had had unusual pains and other odd symptoms since childhood, so I knew there was more going on and I kept searching.
Then my doctors tried to convince me the opioids I’d been taking for six years weren’t helping, even though they had kept me active and working. However, I consented to try the non-opioids used for Fibromyalgia: Lyrica/pregabalin, which made me incredibly dizzy, and Neurontin/gabapentin, which put me to sleep. Neither affected my pain and the severity of the side effects made me nonfunctional.
I was also given yet another prescription for physical therapy, but after my futile experiences in the past, I decided to embark on my own home exercise program using some of the better exercises I’d been assigned in past sessions.
The detailed charts I kept of my sessions showed no improvement in my abilities, but my pain intensity soared both during and days after my exercises. I persisted for five months, but then I could not tolerate the pain anymore.
I resumed my normal activities, low intensity walking and bicycling, which were bearable, thanks to the opioids I was taking.
I saw five chiropractors over three decades and had the same experience each time. The ligaments around my spine and my SI joint are so loose that adjustments only hold for a few minutes or steps before they slip out of alignment again.
I tried acupuncture three times over a period of two decades. The first was short and ineffective. The second time was also short because the acupuncturist was wise enough to tell me that he couldn’t help me, and the third was a long and expensive trial which had no effect whatsoever.
I also tried getting a massage, which was very pleasurable and relaxing. However, once my muscles went slack, my spine and other joints drifted out of alignment as she manipulated my muscles (due to loose ligaments from my genetic disorder).
When I stood up, many joints came back together a little crooked, so it was painful to carry my weight again. Later, surrounding muscles spasmed and the misalignment in my neck brought on an intense headache, so I never tried that again.
Then my doctor suggested I see a psychiatrist who she thought might be able to lessen my pain with psychiatric drugs since he’d had success with pain patients in the past. I tried half a dozen antidepressants, antiepileptics, and mood stabilizers but none had any effect on my pain.
So I tried the Stanford Pain Management Program. Without more than a glance at me, they told me that the first thing they would do is take away my opioid pain medication “because it doesn’t work for fibromyalgia”. This was news to me because they were certainly working very well for me.
They barely examined me or questioned me about my pain, yet they were certain I should stop taking opioids immediately. I began to understand that they were planning to give me treatment for my non-existent addiction and not for my incapacitating pain, about which they clearly communicated their skepticism.
I had to decline the program because I would not give up opioids without an effective pain-relieving replacement that could be slowly substituted, correctly titrated like a new drug.
Until some alternative method of pain control
has been proven beneficial for an individual,
opioids in effective doses are appropriate and necessary.
By 2011, I had given up hope that I’d ever find the cause of my pain.
I was frustrated and angry with medical professionals who would not believe my reports of pain and suggested I was only addicted. I became depressed by the prospect of having the rest of my life controlled by my pain. This prompted me to start psychotherapy, and the person I started with happened to be a specialist in addiction.
In just a few sessions she confirmed I was not an addict, just a person in pain. She explained to me the many ways my thoughts, words, and actions didn’t match those of an addict. She reassured me that the difference was obvious to someone experienced with true addicts, because:
Addicts/abusers take opioids to withdraw from life,
Pain patients take opioids to participate in life.
The long-sought cause of all my symptoms and pain was finally correctly diagnosed as a connective tissue disorder, Ehlers-Danlos Syndrome (EDS). Unfortunately, it is caused by a genetic flaw, so…
There is no cure; not for my EDS, not for my pain.