1585

The average cold lasts 5-7 days; the flu can leave you feeling dragged out for a couple of weeks. Even a broken bone heals eventually.

I have had daily chronic pain since 2009. 4 years, 4 months and 19 days. 225 weeks. 1585 days. Almost 40,000 hours of nearly non-stop aching, burning, gnawing, itchy, lancinating, pulsing, radiating, shooting, spreading, tearing and/or throbbing pain.

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I was diagnosed with fibromyalgia in 2009, which slowed me down, but a[nother] herniated disc, pseudoclaudication, and spinal stenosis since December 15, 2012 have added new levels and kinds of pain and stopped me cold. Only for 152 days, though.

“Chronic pain” lasts weeks or months longer than it “should.” There could be an initial injury or a chronic pain-causing condition like osteoarthritis [OA] or rheumatoid arthritis [RA]. A chronic condition or acute injury can use the plasticity of the nervous system against the body to create pain and other symptoms caused not by observable physical injury but by the dysfunction of the central nervous system.

Neuroplasticity is also called Brain Plasticity [PDF]. Neuroplasticity is the ability of your brain to reorganize neural (nerve) pathways in the brain. In simple terms, every time you learn how to do something, you are unconsciously memorizing the process of how it’s done and what the outcome will be. As you learn, your brain is making subtle changes to accommodate the new information and ability.

…Where neuroplasticity comes in is when acute pain develops into chronic pain. Your body reacts to acute pain as it warns you that something is wrong. Usually, once the acute pain has been dealt with, either with medications or other treatments, the pain goes away and becomes a distant memory. However, over the course of a few weeks, months, and sometimes even years, your brain’s “wiring” may reorganize itself and tell your body that the chronic pain should be there and will stay there.

Because of the prevalence of back and other spinal problems, including multiple back surgeries, in fibromyalgia [FM] patients, and in those I’ve met in person and online, I think that some form of pain coming from the spine without it being damaged, or obviously damaged, enough to be recognized as a chronic condition but it still wreaks havoc on the nervous system and the body as a whole, and eventually the constant pain, the sleep problems, the fatigue, the digestive problems, become consistent enough to be “fibromyalgia.”

[“Plasticity” does not mean an easy, mind-over-matter fix. If you have RA or serious OA, it is not a rule that meditation, attitude adjustment and “gratitude” will solve your pain. Non of that, nor yoga nor exercise nor prayer, stop the pain—these things help you cope with chronic, intractable, crazy-making pain. I can tell you that meditation, heat, massage, distraction help but the pain doesn’t go from 8 to 4 because I meditated or talked to a therapist about how frustrating it is to be This New Me I Don’t Like; the pain is still 8 but I am not adding to it with tension, worry, fear, or being totally overwhelmed by everything. It is not a “cure” or real treatment or proof that neural plasticity is a cure-all or, conversely, that chronic pain is caused/created by not having the right attitude or not toughing it out or not handing it over to God.]

I sit for longer than 10-15 minutes but it hurts, a lot, more and more, and I get up when it is too much of a distraction or “Shit!” and a Lortab are not enough. Standing doesn’t stop the pain but eases the intensity in some places. For a while. Then standing is as bad as sitting is as bad as bending is as bad as twisting is as bad as getting up from anything. The only moderately comfortable position is on my back, knees up on pillows. It is hard to read or do much of anything in this position, unless the big-screen TV is on the ceiling.

I have to buy different shoes because the ones I have either do not have enough support to absorb the shock of my foot hitting the sidewalk that goes up my spine and through my hips, occasionally making me gasp or curse outloud, or are too heavy, or are hard to get into because the arthritis in my fingers makes getting them on too painful, or they are worn down so much they keep my spine off balance and just standing in them causes extra hip, spine, lower back, mid-back, and leg pain.

I have bought a walking stick to go with the foldable cane.

No one, except me, is that concerned about the psuedoclaudication, numbness, almost-daily tingling, the numbness and pain in my toes or the burning in the soles of my feet–it feels like my feet sat in a thin layer of rubbing alcohol too long. The Pop Rocks sensation in my left calf got a quarter of a nod from the specialists and a gabapentin prescription from my fabulous, compassionate GP.

The pelvic pain is not crampy or even the tearing of severe menstrual cramps but burning stabs and spikes, prickling and stinging, heavy pressure that feels like it might pop but never does. Sometimes, for hours, it feels like each hair [not on my head] has been tugged until the follicles are inflamed.

But I’m not disabled. Not legally. Only in quality-of-life terms, which few people give a fuck about. We apparently earn or court our own suffering. That said, life-as-suffering doesn’t help either. Without any breaks, relief, escapes and, sometimes, compassion from anyone…Chronic pain sufferers have high rates of suicide, suicidal ideation and suicide attempts.

Martha Ainsworth, founder and director of Metanoia, a non-profit organization dedicated to suicide prevention, describes the problem of suicide succinctly. She writes, “Suicide happens when pain exceeds resources for coping with pain.” There are many kinds of pain that may lead to suicide, and individuals vary greatly in their capacity to withstand pain.

Your relationships suffer or end or fade because Non-Chronics don’t understand you bailing out at the last minute, not going to x or t which you did last year or for the previous 10 years and why can’t you walk the whole route; needing to get up from the table “too often” or apologizing for losing a train of thought or your own train of thought mid-syllable; not being able to absorb the needs, demands, projections, and psychodramas of others; and saying No more in 1 week than in the previous [I keep typing it as “precious”] 4 decades.

After I got sick and my energy was so much scarcer, I realized that in some of my relationships I had been doing most of the work to keep us connected. Once I began living within my energy envelope, I found that I was no longer able to sustain these relationships without overextending myself.

Some people in my life adapted to my new limitations and our relationships continue. Some, for whatever reason, were unable to adjust and we gradually drifted apart.

They don’t get it. It’s like a secret society. After I had an abortion in 1993, I found a whole sisterhood I hadn’t known about. We chronics are online, a lot, and not just Googling health info so we can harass doctors who, too often, write off chronic pain patients as hypochondriacs, complainers, or depressed women who just need to get over themselves or exercise. Or we are when we can be—it’s hard to type flat on your back or if your photosensitivity or shingles or RA is flaring.

I was thinking last summer because of FM that I needed to scale back/down my education research goals and fantasies. Now, I need to scale down to 0 because I can’t hold more than a few trains of thought, long-term, at once not because I’ve gone stupid but because the pain is too tiring, draining, distracting, and it takes 4x what it used to to concentrate and finish what I used to multitask through. My brain is already multitasking pain and is too busy to be bothered with my fool-ass shit. 

a mad black woman in New Orleans

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