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.
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.
G Bitch,
I had no idea that you were suffering so much from this dread condition. I think Jerry had mentioned it through Derek but he didn’t mention the disease you were suffering – bet this happens all the time because of the diversity of problems/symptoms. I know you don’t know me well but I wanted to say three things – I am so sorry that you are having to live this way. There are lots of things that people have to live with but this is, I know one of the most difficult. Please take this as a supporting and caring boost (I hope) to get you through today.
I wish you could rest here,listen to the birds (doves will drive you crazy.) watch the mullet jump and watch the water move in the canal. I have “retired” – got kicked out of my job because of politics and have time on my hands. I’m 62 so not expecting any job offerings jumping my way. And clinical depression is not often seen as a “real” disease anyway. Jerry’s here most of the time since he is on leave sabbatical but he is is on the computer too so wouldn’t be bothered. I’ve got a vegan cookbook and need to learn that anyway.
If you don’t feel comfortable doing that, I am free to run errands, buy groceries, wash clothes. These might be only on a short-time basis when you are having a specially bad time. I have a camry which has part- fold down seats. I know that you have family but if I can help, I would be happy to do so. Finally, you write pain well. Not many people do. anyway, I am not trying to solve your problems. I just wanted to sympathize and help in any meaningful way.
Charlotte, your compassion has made me teary. Thank you so much, mostly for your understanding and kind words. It’s hard to ask for help but you may just hear from me. Soon. Thanks!
[…] If you or someone you know suffers from this condition, please go read this excellent piecehttps://b2l2.com/2013/05/20/1585/ by the wonderful G […]
So, have chronic from mixed connective tissue disease. Daily aggravating pain in the ass,. I really hate the part where your brain goes dead. Can’t think cause you hurt so much. What a bitch1 I am smart except when i can’t see straight cause the pain is overwhelming,.
I also hate when your pain-occupied brain makes you forget a word mid-syllable. I forgot that part. For good reasons. I think the intellectual hit is what I resent, and mourn, most.
So novel #2 will be a while yet. Sigh.
Try Crocs for shoes. They are sooooooocomfortable. Dumb question but have you tried acupuncture? Good luck.
Acupuncture is hit-or-miss, and not covered by insurance, and the out-of-pocket expense is too much right now. I had some things I was doing that helped—warm water exercise class, whirlpool, stretching, physical therapy exercises, walking, very gentle yoga, etc.—but I had to stop or severely curtail them once this back pain hit. I’m doing what the doctors say and trying to be a good patient….
I haven’t been able to wear Crocs for years, not enough support for my feet or back. I loved, loved Keens. Can’t wear them anymore either. I get Easy Spirits.
The hardest thing to convey is the changeable nature of this kind of illness—FM, mixed connective tissue disease, RA, etc.—because what works Monday may not work Tuesday but again next week. Even when you do as many of the good, right things as you can, you still feel like a bus ran over you; the size of the bus may change, and the weight of the passengers, but it’s still a bus.
Thanks.
Thanks for writing this. I had no idea.
I am going to steal your expression, intellectual hit, cause that’s what it is. I have learned to deal with my physical limitations, which are many: but fuck! when the mind goes I just hate it. I am reasonably intelligent and you are so right.You can be right in the middle of speaking and your brain dies. You completely forget what you are saying. Then everyone looks at you in pity. I hate it.
other than that I do fairly well. But it’s approaching 40 years. that’s a long time to deal.
So very, deeply, fuckingly true. [I didn’t admit how many times I edited and re-edited and added to my last comment, much less the post itself.] It’s hard to do it every day, and it’s hard for your loved ones to see it every day, and there is no secret trip to Hawaii if you’re A Good Girl. Sucks. I’m still mad about the physical limitations. I think, and have said outloud, That was too damn much? I hardly did anything! The long haul of it is exhausting. Girl, do I feel you.
You know I’m here and I get it. I’m so proud of you for writing this. It was hard for you to get all that out and then actually hit the “publish” button, of that I’m sure. Know you’re loved.
I stumbled across this while trying to find FM studies, not sure how, but so glad I did. I’ve told my partner and one friend about my diagnosis, no one else knows but doctors, I was determined not to make an identity out of this. I work in corporate America which is less than forgiving with its chronic illness. Anyway–for that reason and so many more, your words were resonant, moving, chilling…I feel your anguish and feel it for you. While I did have one dark morning where I had to come up with a good reason not to drive off the bridge during my morning commute because of the pain, I don’t think my pain, in general, is anything close to yours. And mine is really bad.
I know you know the drill with supplements (careful with the 5-HTP and SAM-e; if you’re on anything else that boosts serotonin like Tramadol or amitryptiline there’s a risk of serotonin syndrome which sounds fucking horrifying and not at all like the party-in-the-brain I would have thought it’d be)…anyway, an awesome source is Swanson Vitamins. They’re online, just throw the dot com on there. I’m not affiliated; our naturopathic vet told us about them and they rock. Great quality and really great prices. And if you eat the magnesium citrate and ecklavia cava by the boatload like I do, price matters. (Ecklavia cava is brown seaweed extract which has shown promise reducing chronic pain. It’s also an antioxidant which apparently ppl with FM have less of. Brown seaweed extract is sold as a diet supplement for $50 but it’s at Swansons as ecklavia cava for $5.99.)
Anyway, my point wasn’t to provide shopping tips; I’m sure you have that all down pat (I’ve had this all my life but a doctor a few months ago told me, “Hey, you’ve got this.” I said, “No. That doesn’t work for me. I came here for back pain.” Then I looked online and basically read my biography. But I’ve researched obsessively for the past few months because I didn’t even know this was a thing. So I’m fresh off the research trail. I haven’t read ANY blog entries or message boards, that was my rule, for that way madness lies. Your entry tonight was the first one I rad, and I’m so glad I did.
Thank you for writing such a brave, raw post. And thank you for saying “fuck” so much in it. It’s virtually impossible to describe how one feels during a flare without liberal use of all declinations of “fuck” and “motherfucker.” Speaking of which, I have to be up in three and a half hours, and will certainly be fucked at work all day tomorrow. Have done well with sleep for two weeks and fought down both a flare and the brain fog, thanks to 20mg melatonin, amitryptiline, super strict diet, and exercise. Then for no good reason at all, up until 2:00. Well–got to read your post. Worth it.
All the best to you. I know I’m a stranger crashing your blog; pardon the intrusion. I’ll be sending you healing thoughts. Stay strong, sister.
I hope you come back to see this reply…
First, with a blush, thanks, and second, thanks for the SAM-e and ecklavia cava tips—I’d never heard of ecklavia cava and was about to look seriously at SAM-e. Most of my initial research into FM was drug-centered, and only recently have I looked at alternatives. I’ll look at ecklavia cava. I’d like to compare notes, research, hypotheses—I have a few, and have discarded some as not exactly applicable to me—and offer what support or tips I can, and maybe point you to some online groups you may not have come across yet. gbspotmailATgmail_com.
You wrote back and I remembered to check back…yay! Even more kismet-y and weird, I just googled your nom de plume, and if you’re still in NOLA, we live in the same city. Cue the Twilight Zone music.
Have got to escape this wretched desk but will email later (will not be email address I registered with, but same name).
Thank you! Looking forward to exchange of information. Have found very interesting information lately about substance P (neuropeptide) that definitively distinguishes FM as completely–COMPLETELY–different thing than CFS. (Apparently there is much controversy around this and the FM and CFS camps ate like the Hatfields and McCoys. Or Saints and Dirty Birds. Having only the vaguest of notions at best that they even existed, I’d no idea.)
This made my day. Will send a short email now just to get your email in my contacts.