In my life as it was prior to my diagnosis, in the course of my usual exploration of the Internet, I came across the Schmidt Sting Pain Index. It is an imprecise but admirable attempt to catalogue and describe the pain caused by Hymenopteran stings. I possess an amateur fascination with entomology and herpetology and with Schmidt’s original paper, which assigned a perhaps inexact number to each sting but accompanied each with a refreshingly creative description of the pain. An entomologist, Jason O. Schmidt was inadvertently stung by several members of Hymenoptera in the course of his research and realized the the potential uses of quantifying pain. Though it wasn’t his primary research, he didn’t waste the data; instead, he created a five-point scale from 0-4 to classify the kinds of pain one receives from being stung (The Straight Dope). Archetypal representatives are listed below:
0: Imperceptible. The stinger doesn’t penetrate the skin.
1-range: Sweat bees (light, ephemeral, almost fruity); fire ants (sharp, sudden, mildly alarming); or the bullhorn acacia ant (someone has fired a staple into your cheek).
2-range: The bald-faced hornet (mashing your hand in a revolving door); or the yellow-jacket (hot and smoky, like W.C. Fields extinguishing a cigar on your tongue).
3-range: The red harvester ant (bold and unrelenting, like someone is drilling your ingrown toenail); or the paper wasp (caustic and burning, with a distinctly bitter aftertaste: like spilling a beaker of hydrochloric acid on a papercut).
4-range and higher: the tarantula hawk (blinding, fierce, shockingly electric, like a running hair dryer dropped in your bubble bath); or the bullet ant (pure, intense, brilliant pain, like fire-walking over flaming charcoal with a 3-inch rusty nail grinding in your heel).
In my life post-diagnosis, this scale has taken on new meaning.
Fibromyalgia (FM), a chronic systemic pain condition that is especially heightened by pressure, can range from a 1 to a 4+ on Schmidt’s scale but rarely, if ever, is it a 0. The symptoms are unique to each sufferer, but in my experience the pain has ranged from acute and persistent, like clasping a lit electric bulb between your bare hands, like blades sunk deep in a flexing muscle, like pricking, itching needles, noisy on the skin, like a sweaty fist working your heart, like vivisection, no sleep agent, no anesthesia.
This piece is for those medical professionals who wrote me off as healthy because I was professionally dressed, “I looked too good to be unwell,” or who asked me, point-blank, “And you’re sure it’s not all in your head?” It is for the people who tell me, with a tired, tolerant patience they don’t deserve to have, that “pain is largely psychosomatic, you know? Just stop thinking about it and it’ll go away.” It is for the countless, awkward Schmidt 4.0+ days I’ve had to dodge a well-meant hug, or flinched at a touch I couldn’t avoid. It is for Empire Blue Cross Blue Shield, which has conferred upon itself the godlike ability to decide whose pain is deserving of extended outpatient treatment. (Hint: mine no longer is.) It is for the people who sympathize but do not or cannot understand because I appear more or less functional. It is for the Schmidt 0.0 days, when I lull you into thinking I’m “better,” or the predominant and tolerable 2.0-3.0 days, when controlling my outward response can be performed through sheer will.
Mostly, though, it is for all the times you have not seen me break down and cry, on the subway, in line for a bus, on the NJ Transit stairs, on the walk from the train station to campus or from one classroom to another or in the bathroom during class breaks. It is for all the times I couldn’t take it, and you never knew.
To quantify human pain we have the Dol, short for dolorimeter, scale. The dolorimeter applies increasing pressure, heat, or electrical stimulation to ascertain the point at which pain is felt. This is one of the few tools that can be used to diagnose fibromyalgia, by identifying if a potential sufferer has at least 11 of the 18 points, 9 pairs, that are tender points:
When I was finally diagnosed, I had at least 14. The ones that were doubtful may have been, in retrospect, because I was biting my tongue as the dolorimeter pressed down.
For readers who don’t know, FM is non-degenerative and non-progressive. Neither is it curable in most senses of the word. Since it is systemic, it affects almost everything you can think of. It is localized and generalized muscle and joint point. It is permanent inflammation. It is the inability to sleep for days, or the inability to wake up. It is the dense confusion that settles like a pall over the brain when you’re trying to think, register, or comprehend, so common that it has the cute nickname “fibro-fog.” It is inexplicable stiffness and fatigue. It is headaches, migraines, trigeminal pain, paresthesia, peripheral neuralgia. It is restless legs syndrome. It is loss of appetite. It is loss of libido. It is irritable bowel syndrome. It is menstruation so painful you claw at yourself and scream. Because of all this, it is also mental anguish. It is elevated stress, anxiety, and depression. It may be panic attacks. It may be suicidal ideation. It may be irrational fear, or pain-induced hallucination. It may also be misconstrued as any of the above due to the inability to get out of bed, to even roll over, for fear of some other body part starting to hurt, or something hurting more.
When I experienced the first flare-up that led to my diagnosis, I lay on my couch, unable to move, achieving a new understanding of the phrase “haze of pain.” All the Hellraiser flicks I’d seen came to mind. Pain did have a face, and it was this, this not-knowing what was happening to me, why my head and scalp throbbed so badly I had to sleep face-down, why I collapsed on standing, why it felt like hard labor to walk from one room to the next. I began dreading and avoiding routine activities, like standing in front of the stove to cook (too much pressure on the knees), sitting down on the unforgiving, unyielding porcelain of the toilet (too much pressure on tender muscles), lying in bed (too much pressure on one side), rolling over in bed (too much pressure on the other). I learned quickly that new pain was worse pain, began subscribing to the magical thinking that if I just held very still and waited, the pain would vanish, and take the fibro-fog with it.
It’s perhaps worthy of note here that this, in horror films, generally gets you killed.
The more I was told there was nothing wrong with me, the more frantic I became. I was trying to finish my M.F.A. thesis at the time, and most of my days were 4.0+. I was told to leave class a couple of times because it was evident I was trying to power through something I couldn’t defeat. It took me a full year to receive a diagnosis. Doctors approached me like I was a hypochondriac. Every new symptom brought new terrors. Cancer? Stroke? Heart failure? Lupus and Lyme disease had been excluded. It wasn’t rheumatoid arthritis. It wasn’t MS. I had a optic nerve imaging and an MRI done to dismiss the possibility of a eye or brain tumor.
At some point, I secretly began hoping it was something fatal, just so the pain and uncertainty would end. I was already a horror film fan but I began watching with renewed frenzy, jealous of every gruesome kill because they were lucky enough to escape their pain, and I was stuck with mine for life.
When I was finally diagnosed—by a fantastic rheumatologist whom I cannot idolize any more than I already do—I went home and cried. She understood what pain was like. She understood the frustrations of the Western medical industry. She worked with me to figure out a pain management regimen that balanced medication, physical therapy and independent rehabilitation, vitamin supplements, and dietary changes. In those early stages, she monitored me closely to make sure I was improving, administered cortisone shots that reduced the size of my trigger points but bleached my skin, and put me on a low dosage of a tricyclic FDA-approved for the treatment of chronic pain, neuropathy, fatigue, and so on. And this worked, for a while. The medication was cheap. I had few side-effects, the single notable one being that it compounded my fatigue. But physical therapy and home exercise helped, and soon I was mobile, able to dress and feed myself, finish my degree, find various teaching jobs, survive, and even socialize. And I had renewed interest in these activities, which for the past year had been unheard of.
Things went on this way for years. I had the occasional flare-up but my adjunct’s schedule allowed me to squeeze in the extended rest I consequently needed. Rarely were those flare-ups 4.0+, and even during the steady 4.0 days, I rarely experienced the total loss of interest that used to shadow my footsteps. I was able to lie in bed and read and write, even if my comprehension and writing output had slowed due to fibro-fog and fatigue.
I even managed to plan for the future. I collected equipment and converted my room into a pseudo-gym/yoga studio. I organized my closet not by color or level of professionalism but by level of pain. 0.0? Anything goes. 3.0? Stick to the looser tops. 4.0+? Can’t tolerate fitted shirt, pants, or even a bra. So yes, I have a whole drawer devoted to “look professional while going bra-less!” or, for the 4.5+ days, “look like a human, barely!” Friends have called this OCD but I argue that it’s survivalism. If everything is about to be excruciatingly difficult, why make life any harder by having to battle the fibro-fog to choose?
Then this past year occurred. I had made the decision to switch to Communication and was spending my last summer as a teacher teaching at the Harlem Children’s Zone. Maybe it was stress, or growing older, or some new as-of-yet undiscovered complication, but in August I simply stopped tolerating my medication and it stopped helping. The trigger points returned, and with it the fibro-fog, the exhaustion, the 3.5 hydrochloric pulses of pain in my quads every time I took a step. My blood pressure was so low my doctor proclaimed me (jokingly) clinically dead after attempting to get any reading at all. At my lowest point, I passed out on the sidewalk in Soho.
Thus, I had to wean myself off of this medication in September—just as I was starting my Ph.D. program. I remember that on the first day of classes everything was haloed, and my tongue clove to the roof of my mouth, partly from nervousness and partly from medication-withdrawal dry mouth. I was wearing heat patches under my clothes, and my short-term memory was Swiss cheese, meaning that even taking notes (never mind holding the pen) was an onerous task. Then in October, thanks to the insurance I was entitled to as a TA, my doctor switched me to Lyrica, and I was so happy I cried. Lyrica, chemical name pregabalin, has had an enormously high success rate with fibromyalgia patients, and I reaped the benefits with few of the side-effects.
I have more to say about Lyrica but I’ll save that for a separate blog post about the exorbitant cost of Lyrica and its ludicrous categorization as a narcotic-class controlled substance. To continue with this saga of pain, once I switched to Lyrica I began experiencing withdrawal symptoms courtesy of my previous medication. I couldn’t keep anything down, lost my appetite, and was struggling to stay abreast of my coursework and therefore keeping the late hours you’re expected to keep in academia. I lost fifteen pounds in three months. I looked ashen and dazed and cried frequently, on the train and in the bathroom and in my room while I did my homework.
But by spring semester I had adjusted to Lyrica and overcome the withdrawal symptoms. I’d put the weight back on. My trigger points were down. I had a forthcoming book chapter, two conference presentations, and I was happy. I felt the first stirrings of wanting to be social again, maybe even start dating again. And then Empire Blue Cross Blue Shield decided based on a strength evaluation for a single body part that my pain levels were “insufficient” to merit continued physical therapy. I couldn’t afford it out-of-pocket. I stopped going. My stiffness returned. There was 3.0-4.0+ pain roaming through my entire body. It kept me up at night, kept me from focusing. As in the year before my diagnosis, everything else stopped mattering.
This post is as much for your understanding of the condition as it is for your understanding of what it means to live with it. I’m lucky. My FM is not as debilitating as it is for others. I was able to hold a job. I was able to do my craft. I am able, hopefully, to complete a Ph.D.-level course of study. That said, I also know that as soon as my funding is over, I lose the insurance plan I was able to have so cheaply, and with it the low cost of Lyrica. Out-of-pocket, it costs nearly $700 for a 1.5 month supply. Whatever I’d like to think, my position depends largely on who’s going to give me insurance. I’m not idealistic, but that’s a damn near crushing fact to have to face.
So, this post is also for my own understanding: of why this past year was so difficult for me, of why it’s so hard for me (at 4.0) to force the happiness that’s so easy to fake (3.0) or that sort of comes naturally (2.0-0.0). What kills me, ultimately, is that the turning point was nothing of my own doing but of the health care industry, which prevented me from taking Lyrica earlier because it was too expensive on my old insurance, and which cut me off from physical therapy, one of the two things that enabled me to live relatively pain-free.
I’ve been meaning to write a post like this for years. I’m doing it now because I have been wondering, lately, how much it has fed and hindered my career choices and academic paths, how much or little it’s understood at school or at work, how much it is skewing my perception of this past year. I’m doing it because I’ve been experiencing a flare-up that’s lasted for weeks and left me confined to my bed in the midst of an impenetrable fibro-fog, unable to do much besides watch mindless television and write the occasional blog post. Even this minimal activity has been excruciating. Typing hurts, the sheets hurt, the breeze from my window hurts, and this is one of those months when I really don’t know how people survive like this.
Forgive me if I’ve rambled. The truth is that FM is not understood, and around when I was being diagnosed, it was sort of a joke, the diagnosis given when nothing else was discernibly wrong. It was the diagnosis for hypochondriacs. If I’m defensive about FM, or if I go to great lengths to hide how much I’m actually hurting, it’s probably because of that. It’s why I and possibly scores of others like me don’t explain why we dodge your touch, why we postpone dates that might end in physical activity, why we take frequent “bathroom breaks” so that we can do our stretches in private. It’s an invisible syndrome, mostly. We look well. There can’t be anything wrong with us, but under our skin, there always is. The kind of pain you could never accurately quantify.
This work by V. Manivannan is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License.