Today, the Senate Committee on Health, Education, Labor & Pensions is holding a hearing on chronic pain. This hearing came about through the work of the Chronic Pain Research Alliance. I was invited to provide written testimony to the hearing on behalf of The CFIDS Association, and the full text of my testimony follows below. I am honored that my testimony was submitted in memory of Christy Gaffey, who lost her battle with CFS and interstitial cystitis last Thursday. I hope the Senators HEAR our pleas for action to help all of us suffering with chronic pain because Christy, myself, and millions of others do not have time to waste!
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U.S. Senate Committee on Health, Education, Labor & Pensions
Full Committee Hearing on
Pain in America: Exploring Challenges to Relief
February 14, 2012
TESTIMONY OF JENNIFER SPOTILA
This 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.
My testimony is also posted on Research 1st.
Not Just Us
The Senate Health, Education, Labor & Pension Committee hearing on Pain in America (read a summary here or watch the hearing here) made me realize something: it is not just the CFS community that has to struggle against psychogenic arguments and labeling.
Most people in the CFS world are familiar with the theories and pronouncements of Dr. Simon Wessely and others who believe that CFS has a mental/emotional cause. I won’t derail this post to go over that well-traveled ground. But I was unpleasantly surprised to hear some of the same language and arguments at the hearing on chronic pain.
The first four witnesses (Dr. Lawrence Tabak, NIH; Dr. Philip Pizzo, Stanford; Dr. William Maixner, UNC; and Christin Veasley, National Vulvodynia Association) were truly excellent, and they made many of the same arguments for increased funding of pain research that we routinely make for increased funding of CFS research. But then Dr. John Sarno of NYU delivered his comments, focused on a pain syndrome he calls Tension Myoneural (or myositis) Syndrome. According to Sarno (who coined the term), TMS is physical pain, particularly back pain, produced by unconscious and suppressed rage or other negative emotional states. Sarno stated in his testimony that the physical pain is real and results from physiological changes induced by those emotional states.
Dr. Pizzo was masterful in his responses to Dr. Sarno’s comments, pointing out that we need to be “very sensitive to the words we use.” He contrasted the way cancer pain is perceived and treated, where providers and family rally around the patient, with how pain syndromes like fibromyalgia are perceived and treated. Both he and Dr. Maixner spoke eloquently about the role of situational factors in chronic pain, including lack of access to care, injury from heavy physical labor, and stress-activated genetic pathways. In response to a question from Senator Bernard Sanders (I)(VT), Dr. Maixner described socioeconomic status as a “surrogate marker” for chronic pain, as the incidence of chronic pain is higher among people of lower socioeconomic status. Dr. Sarno, on the other hand, stated: “Poor people are poor and they’re angry. They’re furious. Fury evokes physical symptomatology as a defense against the rage.” Yes, that is a direct quote, as best as I could transcribe it.
It turns out that the reason Dr. Sarno was invited to testify at the hearing was because Senator Tom Harkin (D-IA), chairman of the committee, invited him. Why? Because, as Senator Harkin shared during the hearing, he used Sarno’s techniques (described in Sarno’s four books) to “cure” himself of disabling back pain. Furthermore, a female relative of Senator Harkin’s “cured” herself of fibromyalgia using the same techniques. Senator Harkin expressed disappointment several times that the Institute of Medicine’s report, Relieving Pain in America, did not address the psychological origins of pain and the possibilities of treating pain with psychological techniques. To be fair, Harkin stated his strong support for increased funding for pain research, but wants research to “look at everything,” including psychogenic explanations for pain.
Dr. Pizzo thanked Senator Harkin for sharing his story, but cautioned that we cannot lose sight of the patients who have tried and not benefited from currently available treatments. Christin Veasley was impressive throughout the hearing, but I especially loved the way she responded to Senator Harkin on this point. She stated that she has tried all the mind-body techniques to manage her own chronic pain, including yoga, biofeedback, stress reduction and more. But none of those treatments have cured her pain. She acknowledged to Senator Harkin that “Your experience is real, as mine is real.” Ms. Veasley pointed out that we can’t expect to understand or tease apart the multiple contributing factors in pain if we don’t research it, and no answers will be found until there is adequate research.
Perhaps I should be grateful that Dr. Sarno was the only witness peddling a psychogenic cause for chronic pain and, indirectly, peddling his “cure.” Perhaps I should not have been surprised that Dr. Sarno and Senator Harkin so vigorously embraced this simplistic explanation for pain. But truthfully, I was appalled, just as I am every time I hear the claim that there is a psychogenic explanation for my own illness. Emotions certainly play a role in coping with chronic pain and CFS, but that does not make emotions the cause of either condition.
Dr. Sarno claims that once patients understand that their pain is a surrogate for their suppressed rage, the “need” for the pain disappears and they are cured. It’s true that I am angry, Dr. Sarno. I’m angry that doctors like you are so dismissive of my experience. I’m angry that inadequate levels of research funding mean I will have to endure advice like yours, in addition to my physical pain, until the real answers to CFS and chronic pain are understood. And despite the fact I have just recognized and acknowledged my anger, I am still in pain and reliant on the inadequate treatments I described in my written testimony to the committee.