Living in the Shadow of Pain: Jennie Spotila’s Senate Testimony

Posted by Cort Johnson

U.S. Senate Committee on Health, Education, Labor & Pensions
Full Committee Hearing on

Pain in America: Exploring Challenges to Relief

February 14, 2012


Jenny SpotilaThis testimony is submitted on behalf of the CFIDS Association of America, in loving memory of Christy Gaffey of Williamsburg, Iowa. Christy lost her battle with chronic fatigue syndrome (CFS) and interstitial cystitis on February 9, 2012 at the age of 52. She was an advocate for these medical conditions and, in days of better health, participated in lobby days organized by the CFIDS Association. With this testimony at today’s hearing chaired by Sen. Tom Harkin — her senator — we recognize Christy’s life and the voice she once gave to all who have been jailed by chronic pain conditions. We implore, in Christy’s memory and for all those who have been lost too early to these conditions, that today’s hearing mark the beginning of serious action to address and curb the personal, family, community, state and national toll exacted by conditions marked by chronic pain.

Chronic fatigue syndrome is the name of my illness. I cannot count the number of people who have said to me, “I had no idea that CFS had pain as a symptom.” But it does. Think about the last time you had the flu. Did you lie in bed, shaking and aching all over, too weak to sit up? Yes. That is what my pain is like, but it is like that every day. Pain is always with me. It follows me around like my shadow. Just as a shadow changes shape with the light, my pain expands, contracts, and tries to swallow me whole. There is nowhere I go, nothing I do that is unaffected by pain.

Aching, throbbing, heavy, sharp, tingling, stabbing, crushing – all these words cannot fully describe my pain. Sometimes I lie in bed, weighed down by it. Or I might be sitting up and feel pain like a lance through trigger points in my back. My wrists ache, my toe joints hurt. One day, it’s my calves that tighten and cramp. Another day, my neck pinches and headaches loom. There are times when my whole spine is on fire and nothing I do alleviates the pain. There are times when the gentlest touch is more than I can bear, even my husband’s hand on my arm or my hair brushing against my neck.

I’ve worked with physical therapists. One said there was no hope when my body did not respond to the prescribed program. My current physical therapist has made great progress in loosening the trigger points in my back, but there has been no change in my overall pain level or experience. And the catch-22 is that the exertion of going to physical therapy twice a week and the daily stretching regimen does, in itself, increase my pain. I tried acupuncture, too. The needles are supposed to be painless, but I felt ropes of fire shooting out from every needle site.

I’ve consulted with pain management experts. Over the years I’ve tried aspirin, bextra, celebrex, cymbalta, flexeril, gabapentin, ibuprofen, imitrex, lidocaine injections, lidoderm patches, lyrica, pamelor, percocet, soma, topomax, tylenol, tylenol 3, tramadol, venlafaxine, vicodin, and wellbutrin. Most of these medications either did not help, or helped but came with intolerable side effects.

Pamelor caused dreadful acid reflux. Topomax caused flashing lights in my peripheral vision. When my doctor decided to discontinue venlafaxine, it took me more than two months to wean off the dose and even then I endured withdrawal symptoms. I developed a frightening hypersensitivity reaction to tramadol, forcing me to discontinue the one drug that worked very well for me. Opiates like percocet and vicodin were a dream come true. The few weeks I was on percocet after the tramadol hypersensitivity were the only pain-free weeks I have had in more than fifteen years. But no doctor is willing to prescribe them for me long term. Instead, my pain management doctor believes the goal is to keep my pain manageable, not to make me pain-free.

Pain is intertwined with fatigue like a snarl of barbed wire. Being in pain makes me more tired. Activity makes me more tired and increases the pain. I always have to be careful about my physical position – legs and back fully supported, neck not too bent. Some days, I cannot get out of bed at all. Even when I am able to function, pain limits what I can do. I am fortunate not to have intense, localized pain that might prevent me from reaching for an object or moving in a specific direction. Instead, the pain hovers in the background, creeping ever higher. The generalized ache grows stronger and louder until it overwhelms every thought or intention. I might take a few steps out of my cell but Pain, my jailer, will always shove me back in and slam that cell door shut.

On good days, I get through the day with a few hours of activity such as cooking or paying bills. But by the time dinner is over and the dishes are done, I am on the verge of collapse. A hot pack and bed by 7pm – I feel like a 90 year-old invalid. On bad days, I max out on all my pain medications. If I am very lucky, the medications will keep the pain to a tolerable level. But there have been many nights when all I could do was whimper. More than once, I have contemplated going to the emergency room for pain relief on nights like that. But what would they do for me? How would they view me, a 40-something with normal blood work who insists she needs medication for intractable pain? I have never bothered to find out.

Living with this pain is like juggling while riding a unicycle. One lapse of focus, one dropped ball and everything comes crashing down. The delicate balance of rest, medication, and physical therapy will keep the pain at bay, but inevitably, something destroys that balance and the pain comes roaring back. No one can pedal a unicycle indefinitely. I try my best, but sometimes, living with this pain doesn’t feel much like living at all.

Thanks to Jennie for allowing us to post her  testimony. This blog originally appeared here.  Check out Jennies new blog ‘OccupyCFS here.

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