I’m now attending a weekly meeting of fellow pain patients in the area. It’s very good. A few things came up which I felt confident to share with the group and am now sharing with you, because the body of info is so useful… even if it’s only connected “under the hood.”
Pain care in the western New England region
Here are the local resources I can (to some degree) recommend. Those of you from other states and regions, please feel free to make recommendations in the comments! 🙂
Baystate Pain Management
There’s a Pain Management Center in Greenfield, MA, which I never knew about. It describes itself as “interventional”, meaning their focus is on procedures and injections and the like. (This means they aren’t currently doing much with the material mentioned in the Readings heading, but that may change in time.) They also provide PT and acupuncture, the latter only at the Springfield site. https://www.baystatehealth.org/services/pain-management-center
The Springfield site is the old home of a doctor I’ve mentioned before and don’t want to mention again. I noticed they don’t list staff on their current web page, but I do intend to follow up and learn a bit more about their current practitioners.
My doc, Lloyd Saberski, is intellectually conservative, and will do nothing that has a fair chance of hurting the patient. (Since I tend to be more gung-ho, I consider his approach a necessary complement to mine.)
There are a couple of other specialties (stem cell treatment and a weight-loss thingy) attached to the clinic, which is probably how they stay in business despite putting something as rare, time-intensive, & low-paying as advanced pain diagnosis at the center of the practice. I have never had the least hint of being nudged towards either of those; rather, Dr. Saberski specifically mentioned once that stem-cell treatment was still an immature modality with only a few conditions it was proven for, and that it would be totally unsuitable for me. Despite my poundage, he has never mentioned weight-loss, not even with a glance.
Readings on brain plasticity, with guidance on pushing back
I consider this the best lowdown on trauma gets put in place into the brain & body (and why this shows that Worker’s Comp and the insurance industry are specifically trying to destroy us, so don’t buy their evil story about you): “The Body Keeps the Score” by Bessel van der Kolk
It’s pretty science-y, so feel free to start with other authors like Pat Ogden or those listed below.
He’s a doc who developed central pain in himself, realized the current medicine on it was, um, let’s call it ill-informed, and eventually turned his extensive study on the subject into accessible material for the rest of us. He’s a good story-teller with an eye for the compelling detail that makes his point. He has two books out, both of them excellent, informative, and inspiring, avoiding all the usual pitfalls of physicians who like to write. He stays on topic, refers to the science, defers to the patient’s experience, and each side-trip turns out to be relevant and interesting.
I now mentally push my pain back up my spine and squish down on the pain regions in my brain every time I think of it 🙂 Week 2 — 4 more to go! Read more from him to understand what that’s about.
Credited with developing one of the most-recognized techniques (called EMDR) for accessing the neurobiology of distress and reprogramming the mind/body response to it. Some of her work is very clinical, and some of it is designed for anyone to pick up and use for themselves. Be aware that EMDR techniques tend to be multi-stage processes, and the “at home” techniques involve a little advance work to set up your mental safety-net. (I did that during my designated meditation time, which I use for any solitary mental healing work.) With that done, you have a lot of options later for catching yourself and quickly restoring your ability to cope.
An outstandingly practical person with tremendous insight and depth, she is one of the founders & leaders in the field of understanding how ghastly experiences interact with the brain, and how the individual can get consciously involved and get back in control of these systems.
Note: These last two skillful practitioners produce, not only video clips and their defining books, but also accessible articles, textbooks, narratives, and workbooks for both professionals and patients. This provides many ways to get into their information, whatever your sensory learning mode and attention span, so you can see what works for you.
A lucid speaker and explainer with many videos and a couple of books, especially (but not exclusively) for brain-science nerds. He co-authored several additional books that turn his theory into practical tools and techniques to use in real life. He focuses on hot issues for painiacs and those who love us: re-training our brains to identify and embrace the feeling of safety, developing healthy relationships in spite of twitchy brain responses, and re-developing our neurological coordination so we can get back in charge of ourselves.
Multiple access-points to get to the same root issues of healing our neurobiology
These brilliant practitioners have come up with different ways to access and engage with our natural neurobiological wiring, in order to manage our own brain and body responses better. Many of them focus on trauma recovery rather than the ongoing disruption of central pain etc, but, where that’s the case, I mentally edit for ongoing “trauma” (which ongoing pain is, strictly speaking), and I find considerable insight and useful techniques there. Great stuff. Also, if you’ve had awful things happen in your life, you may find a useful healing approach in one or more of their works.
Resources & info in this blog
I’ve been keeping a blog for ~9 years, though the earlier years got lost in a move. (Just as well; I was flailing.) Questions I could probably bore you to tears answering in person…
As I say elsewhere in this blog, it’s a bit of work to generate the first set of documents, but maintaining them is easy, and the payoff in personal poise and doctor response is tremendous.
Why is sitting in a moving car for hours so rotten?
Oh, boy, let me tell you what I’ve found about this! I think of it as 4 main issues, each of which I’ve developed ways to mitigate for my own case:
Our skin (where all those peripheral nerve sensors hang out) is hardly moving and half of it is pretty much unable to breathe, due to the mechanical pressure of our limbs against our bodies and the seat against our backs & thighs.
Hungry skin, with cellular & intestinal metabolic waste building up, no way to flush itself, with unhappy sensors, makes for serious discomfort.
I find a good song and dance & gently gyrate in my seat :))
Believe it or not, cars (especially American cars, sadly) are made of plastics that release molecules, which is called outgasing. Most plastics (including fabrics) outgas, meaning that molecules evaporate off the surface and escape into the atmosphere. These aren’t body-friendly molecules. Variously, they may interfere with endocrine (hormones) and aprocrine (sweating) activity. Many are neurotoxic, capable (depending on individual factors) of reducing impulse control, spiking irritation, and triggering emotional and physical pain. (Many of the studies around this have disappeared from the web, which somehow doesn’t surprise me. Sigh.) This lessens as cars age, but doesn’t go away as long as there is plastic, car fabric, foam, treated leather, varnish, etc, in the car.
The vehicle itself compounds all the skin stuff, and adds a constant low-dose exposure to neurotoxins.
Even in cold weather, I roll down all the windows every hour or so and purge the air in the car.
Our joints are not able to move much. The position, with the hips rotated slightly back, the shoulders reflexively rolled slightly forward to compensate, and not much room to do otherwise, is an unnatural position to be strapped into. It reduces ordinary motion, CSF/lymphatic flow, and nerve transmission, especially through the hips and spine. Our joints carry a lot of sensors, including those for blood pressure and balance; having them stuck in one position (while we’re breathing outgas, of course) makes the sensors unhappy, contributing to that general sense of yucky unpleasantness.
Unhealthy stasis in the joints, spine, and circulating body fluids, including CSF, lymph, and blood. This contributes to a central (brain & spine based) body-unhappiness.
When I’m driving alone, I stop every hour and, at least, stretch and move until I feel okay, or do t’ai chi/qi gong/yoga if I feel safe enough. When I’m being driven, we stop every 1-1/2 to 1-3/4 of an hour. We usually stop for 20-30 minutes, unless we’re in a real hurry, in which case it’s 15. I don’t tolerate less.
Mitigation bonus: stopping this often means I can get potty breaks, making it easier to stay hydrated and up on my electrolytes — which makes everything more bearable and significantly reduces recovery time.
For many of us, vibration is a problem. It certainly stimulates the nervous system, especially in the spine and feet, and wherever you’re touching the structure of the car.
Whether vibration itself is obnoxious or not, car vibration is irregularly irregular, having no consistent pattern whatsoever. This means my brain/body has no chance of anticipating or compensating for the rhythm of it, putting my body in a constant state of jolt. I find it exhausting, and it pushes up my dysautonomia as well as my pain.
Central stimulation in a relentlessly irregular vibrating pattern can be really harsh.
I adapted the inside of my car to reduce my exposure to seat outgas, improve airflow to my skin, and cut steering wheel and seat vibration to manageable levels. I also chose my car carefully to get maximum smoothness & good shocks in the first place.
I’m working on a novelette about the meningitis madness of last month. Until I get it done, let me entertain you with another tale of traveling with pain.
About five years ago, I fled an intolerable situation in California and, being pretty sure I was in my last few months of life, went back to the Northeast to visit with my nearest and dearest and stay until I mended or died, whichever it turned out to be. In short, I was not at my precarious best. I’d thinned my belongings down to what would fit in a suitcase small enough for me to handle, plus a spare set of “smallclothes” and meds in my laptop bag.
I flew into JFK airport and made my way (eventually) to a New York suburb down the street — and downmarket — from Scarsdale. I thought flying across country was hard work. Leave it to New York City (and environs) to adjust that perception. Anything worth doing is worth doing BIG!
It started with getting my luggage — the carousel changed 3 times. It had my supplements and laptop power cord in it, so there was no leaving it behind, as there was no knowing where it would wind up if I abandoned it and tried to get it tomorrow — it could land in Athens stuffed with either explosives or maple candy, or in the garbage scow on the Hudson stuffed with random bits of unsuccessful mobster; the contents would be more oddly distributed still. I’ve been flying into and out of JFK since the early 1970s, and I never leave my luggage uncollected there.
Each time a new carousel number was posted next to our flight number, herds of wilde travelbeests lumbered across the linoleum plains, flowing around eyots of irrelevant carousels and travelers from other flights, who huddled against treelike pillars and carousel islands in order not to be trampled underhoof.
I limped gamely after, unwilling to leave my luggage to the mercies of the feral crowd. We ultimately wound up back at the first one, which somehow didn’t surprise me.
I managed to get my bag unhooked from the carousel lip, but no further. It was just about to throw us both into the guy next to me, when he kindly popped it out and dropped it neatly next to me, with a brisk nod. Then went back to field the hefty steamer trunk of the twitchy Givenchy skeleton behind him.
I debated taking the bus to Penn Station ($3.50) vs train-shuttle (unstated) to the shuttle-bus($1.50); figured train-shuttle would be free, as my training in UI & signage, and casual acquaintance with the law regarding same, made it absolutely clear that prices must be stated up front. No price stated, ride is free. Sweet!
Of course, every other international airport I’d been to in the past 20 years provided free transport within the airport complex. This was New York, where you’re charged even for the gum on your shoe, so I was a little wary, but I was also exhausted and poor.
Got off at the end of the train-shuttle, pulled my wheeled suitcase to the exit door, and there found a sign stating it cost $5 to exit the train-shuttle station.
Stared at sign for 2 solid minutes, flies drifting in and out of my open mouth. SO. BLEEPING. WRONG.
Briefly considered going back, but too tired. I gave up my prospect of a little “real” food in the city to get out of the shuttle track area (why did I think $5 would buy anything in NYC?), and got to the shuttle bus.
The leaderboard read, “Penn Station.”
I asked the driver when the bus came that would take me to Grand Central. He said, “This bus goes to Penn Station.”
I asked again when the bus came for Grand Central Station, and the bus driver again said, “This bus goes to Penn Station.”
I said, “I understand that. I’m wondering when the bus is that goes to Grand Central.”
“This bus goes to Penn Station, lady.”
It finally dawned on me, as he was about to close the door in my face, to ask if there WAS a bus to Grand Central from the airport.
“Nope. This is the only shuttle into the city.”
“Nope. You have to get from Penn to Grand Central yourself.[I interjected, in shocked squawk, “STILL?” He nodded.] You can take a bus or the subway, but with your luggage, you’ll want to take a cab.”
I hitched up my jaw and hauled self and luggage in. He almost waited until I was seated to take off.
A teenager tripped over my suitcase on the wide, spacious, brightly-lit shuttle-bus. My suitcase came up to mid-thigh and was HOT PINK. Somehow, he walked right into it and went down with it — wrenching my wrist and elbow of course. After looking around blearily, initially wanting to blame someone other than his own clumsy butt, he very sweetly picked up all 38 pounds that encompassed every object I owned other than the clothes I had on, which was more than I could do, and put the handle back in my hand. I re-wrapped it with the scarf I used to cut the vibration and, with an added loop around my forearm, provide some stability against my weak grip. But, in case of other spaced-out passengers, the loop didn’t go back on until I was off the bus… at Penn Station.
Because it’s NYC, where a good conflict should never be resolved but should be handed down for posterity, they have NEVER IN THE PAST CENTURY figured out how to link up the northbound train station with the southbound train station, despite the fact that the trains are the lifeblood of the city and, on top of that, millions of customers travel from south of NYC (Baltimore, Washington DC, and points south) to north of NYC (from White Plains to Buffalo, all of New England, and Canada) every. freaking. year.
The JFK shuttle comes into the southbound train station, Penn. I needed to leave from the northbound train station, Grand Central. It was up to me, as it has been up to every single individual traveler in the past 100 years, to figure out how to get from provincial-sounding Penn to the arrogantly misnamed Grand Central. Let’s review my choices:
A cab was out of reach, especially as I’d just blown $5 on a ride that should have been free.
The subway meant more confusion, bumping, and stairs (the elevators and escalators are always out of order or being fought or pee’d on, sometimes both at once) than I could even think about without screaming.
The bus required finding secret, unmarked bus stops where they WILL ignore you if you’re off by a few feet and, I’m not kidding, either one or two transfers for one of the most essential routes in the city. There was no direct bus between the two major terminals of this train-dependent conurbation.
I can’t make this stuff up!
I decided to haul myself and my hot-pink suitcase the X blocks of crappy city sidewalks to Grand Central. “It’s not that far” — famous last words. “I’ve done it before” — 20-odd years ago, pre-injury.
I checked the map, got a sighting on the sun, went one block to read the street sign and check my direction, turned left, and marched off — for about 5 steps.
There were many adjustments to work out: soft tethering scarf, arm used (eventually, both), length of stride, and what to focus on — the directions, the pedestrians who mostly swerved nicely, the truly awful surfaces I had to traverse. The surfaces won in the end, out of sheer necessity. The occasional bozos, who thought I could steer better than their unladen selves, bounced off of either me or my sharp-edged case, spitting vile things without drawing breath. I kept on, pushing through the yawing wobbles the collisions caused as I pitched and heaved steadily onward.
Dear heavens, it was arduous.
Halfway there, dripping soot-laden sweat and hauling my grimy, now ashy-rose suitcase which had accumulated about 15 pounds of pollution by then, I found myself heading towards a cluster of burly cops standing between a parked cruiser half in the road with its butt half blocking the driveway, and the loading dock behind.
They gave me that dry, supercilious stare that city cops learn in the Academy. It says, “For our comfort and convenience, we’re deciding whether or not to kill you right now. Don’t try to make our day.”
I thought about that for a moment, trudging along with my case baulking at the bad paving, yanking my swollen wrists around like a fighting tarpon. I glanced at the path around the cruiser, involving 2 curbs, bad patching, and a pothole; quite apart from the random, fast, and dangerous traffic in the street. Definitely worse than the sidewalk.
I realized what I looked like: a grubby, chubby, oversocialized, White middle-aged female, evidently too poor for a cab. Very low on the food chain.
I realized I didn’t care.
I flashed back to the Jaguar my friends used to call me.
It was a youthfully arrogant and vigorous period of my life, when an off-duty cop in a bar in Manhattan wanted me to tie him up and beat him black and blue, because he’d really enjoy that. (I refused ever so courteously — which went curiously with the well-worn motorcycle jacket and wash-and-wear lack-of-hairstyle — and walked away, eyebrows twisting at the sheer novelty of the experience.)
I refused to walk around into the street. It was insane and vile to expect it, when I could clearly hardly put one foot in front of the other and was towing my life with battered arms.
No. Not playing that game.
One tactic of successful women:
If the game is rigged against you, change the rules.
This clot of cops got the twin-engined, diamond-drill stare from under my beetling brows, the burning power of pure womanly disgust and exasperation doing the work of 5 bodyguards and a million dollars.
New York’s Finest peeled back from my path like an amateur drill team, stumbling slightly and eyes wide.
Yeah. That was more like it.
I heard their startled and admiring voices behind me. I almost smiled. I wondered what they’d say if I turned around and demanded a lift. It was almost worth the effort, but turning back was unbearable, even for that entertainment — so I kept on.
NYC cops weren’t so racist then; it might have worked even if I weren’t White. The good old days.
Stumbled into Grand Central, at last.
After dropping my sweat-sodden self onto a bench until my breathing evened out, I got up on pure willpower (my legs certainly didn’t have much to do with it) and wobbled up to the ticket window (One of those funny alcoves on the right.)
Despite the unmitigated chaos and relentless interference of my cross-City odyssey until now, I had the pleasure of getting good instructions, delivered clearly; the right ticket to my destination; explicit directions to exactly the right track and the right train; and which cars to avoid — “The drunks use that one, and it’s never clean.”
I fell into the seat nearest the door, then slid to another when someone dumped a heavy bag which fell over onto me, edge first of course. I let the bag lie and he eventually picked it up.
A lovely young woman, the quintessence of perfectly-formed and perfectly-presented modern American beauty, got on in one of the suburbs, sat down across from me, and gave my weary, grubby, chubby, middle-aged self the sweetest and most open smile. I did my best to repay such sweetness from out of the blue with the best smile I could dredge up in return, and a nice word.
I got off at the Scarsdale stop and there was a slight pause in my progress as I resisted the boisterous flow of commuters scenting their stables. Clutching the rail that had kept me from being swept under, I saw a car door open. In a few steps, I fell off of the train station and into the arms of my old friend.
I asked her later why such a beautiful, clean, discreetly made-up, perfectly turned out young woman would greet such a gargoyle’s appearance with such sweetness. My friend replied, “I’m not sure how to tell you this, but it’s envy. You can afford to let yourself go [finger-quotes.] She can’t. She wishes she could be like you.”
It finally penetrated what a trap the relentless and expensive looks-slavery of upscale New York is for women. My lifelong sarcastic envy of “Barbie dolls”, not to mention “Givenchy skeletons”, died on the spot and I was glad I’d added the nice word. Anyone who could envy me at that point was in really bad shape.
The cross-country flight was originally going to be the funny story I told to amuse my hostess — delay, changed gate, dashing around in a wheelchair, turbulence, sick babies, nervous lady with long arms and huge rings taking up the aisle and risking the eyesight of those nearby — but it really paled next to the story of the last few miles. She laughed and applauded and then, once I was fed and pilled and washed, tucked me into a soft bed with endless pillows. I slept better than I had in months, safe and still and comfortable at last.
I haven’t tried to cross New York City since, except when I can afford a cab all the way from the airport to Grand Central. Life is too short for that much work and physical battery… and the NYC cops have changed.
I had a day off from driving around. After wonderfully quiet morning, I took a walk to the nearest park, half a mile away. The mistletoe was going like gangbusters:
It was shocking to realize how much the tendons in front of my hips had shortened. I had to use a bit of the washing-machine action through the hips, to get a stride more than a couple feet long.
That’s way too hard on the cartilage, so once the washing machine warmed me up enough to stretch without injury, I stretched enough to let me take a tolerable stride without grinding my knees.
There’s only so much my tendons will release, in one careful stretching period. There’s quite a bit of work ahead of me.
I really haven’t been taking position seriously enough: spending so much time driving is not just hard on the torso (which I have managed with better success) but it’s hard on everywhere you bend, especially when your body sucks at bouncing back.
Short tendons in the front of the hip pull your lower back out of alignment, dragging on the front of the spine. This is terrible, as anybody who has ever had the least little bit of low-back trouble can tell you.
The way CRPS makes your tissues less resilient means that a few good stretches will not do what they used to do, back in my 20s and 30s, when 10 min. of dedicated work would put me right back in trim. Like most athletic young adults, I had no idea how good I had it… 🙂
Taking care of my hinges now has to be part of my daily routine. Especially since the driving isn’t over yet. Stretching five or six times a day, like I do my neck, which I’m still losing ground on; walking absolutely every day, or at least six days out of seven. At least it will buy me time, until I come up with something more definitive.
I fight hard to keep CRPS out of my legs in terms of circulation and sensation. Not interested in losing them to any kind of laziness!
Taking a day to rest has been just the thing.Now here’s what I mean when I say, “I took an Epsom bath…” And I’m sorry to say that getting images loaded will have to wait for another day, so use your imaginations for now 🙂
Nearly all motels have a bathtub. I consider this essential. They’re small, but adequate. With a swipe of cleanser and a quick rinse, I’ve found all of them usable so far.
I should add that baths are not essential to Epsom treatment for CRPS. Here are a couple of tricks I’ve used, with a degree of success which not only included the targeted limb but also improved CRPS for me generally:
I’ve immersed my arms in an Epsom solution in a sink or basin. This is great when I’m not up to a bath, but I’m too chilly to sit around with wet limbs. I lean into the basin, with sleeves all the way up, and slosh and slosh and just soak it up. I’ve found that not only does it help my arms, but the relief goes up through my shoulders, down my back, and even my feet feel better after doing this with my arms for 15 minutes or so, 20 minutes if I can stand there that long.
When the dysautonomia is being REALLY bratty, I sit with a basin of Epsom solution and a tea towel nearby, and simply wipe the bothersome limb, stroking from healthy area to painful/spasming/misbehaving area, with the same mental chants I describe below…
Both of these strategies work extremely well. Many of us are accustomed to sink baths, and it’s no harder than that — easier, because rinsing is optional.
Temperature – the first consideration
People with chronic CRPS have two substantial issues that affect bath temperature: wonky signals to the circulatory system, and screwy temperature regulation.
Hot baths are a thing of the past. They aren’t good to me any more.
I like a bath that’s just a few degrees warmer than the temperature that feels like nothing on your skin. That seems to provide the best results.
I find chlorine to be counterproductive, so I let it go first. I run the tub a little hot, with the fan on, and leave the room for 5-10 minutes until most of the chlorine dissipates. (This really works.) Then I adjust the temperature.
MgSO4, my ally
I’ve gone up to using about 2 pounds of Epsom salt for one bath. That’s about a third of the 6 pound bag, costing between $3.50 and $6.50, depending on where you buy them. I used to use a cup or two, but I really get better results with a stronger solution.
Remember, this is about re-regulating and re-normalizing, so leaping into the bath and getting busy is the wrong thing to do!
Going one step at a time and persuading my body to stabilize at each point is how the process works.
So I take a couple minutes to just sink into it, let the mottling pattern on my lower body and arms fade, and get some circulation going to my overworked skin.
I brush over all my limbs with my hands, introducing them to the idea of tactile input, and how that should go. This is an important first step, because the touch of a hand wet with Epsom solution is softer than silk, and it’s important to start with the most positive possible sensations. This helps de-alarm your central nervous system as well as re-acquaint your skin with the world. This is supposed to start, and end, as a definitely positive experience. In between, there might be some work.
When working on such deep and challenging health issues, it’s important to set yourself up for success whenever possible!
Back to our bath.
Nearly all motels have washcloths with a nice scrubby texture. The soft kind that you get in the bath and body store feels to me like turgid gelatin, soaking up a lot of soap and doing very little in the way of exfoliation – which is what I used to use washcloths for.
Now, it’s all about renormalization – or, to use the standard allopathic medical term, desensitization.
Leave it to medicine to make returning to normal sound like something bad!
I start with the soles of my feet. If yours are too sensitive to touch, start where you can touch. Remember, set your body up for success. This second pass distinguishes between contact on the surface and underneath, which are two different sensory realms. The first thing I do is go underneath, to the tissues below the surface of my feet, in a gentle and encouraging way.
I hold the washcloth in my open hand, using a big, squishing gesture.
With that big gesture, and a certain amount of gentle elbow grease, I reassure the soles of my feet that they’re doing fine. Once they start sending appropriate signals of touch and motion, I work around the foot and up my ankles.
Using the washcloth in one hand, and nothing in the other, I alternate strokes, soothing the frazzled burning sensation left by the terrycloth with the silkiness of Epsom water in my palm. The frazzled sensation eases off gradually.
I don’t just notice what the sensations are from my skin, I tell that part of me what the sensations ought to be: It’s just terrycloth. There’s no burning here. It’s just terrycloth. It should feel pleasantly scrubby, nothing more.
Every now and then, I move the washcloth to a part of my body that still thinks terrycloth is just terrycloth, and give myself a brief demonstration. That seems to help.
Once the signals start calming down a bit, I can go deeper. My calves take a little extra care. I start on the left, and it feels like a hunk of plastic. I tell it to calm down – in firm, maternal, authoritative tones – and go squish my right calf instead. When my right calf and shin are sending nice, normal signals of terrycloth texture in motion, I go back to my left calf, reassuring it that you can be normal, you know perfectly well what that feels like, there you go, you can do it.
Firm, yet loving, maternal tones are hard to resist. It’s a great re-progamming tool for bringing your brain closer to normal.
Eventually, my left calf loses that awful dense feeling and starts to feel like a leg again.
The next step is to address the surface sensations on up the rest of me.
I coach my skin not to send sparkling messages of hot and cold where the washcloth goes, but just the sensation of terrycloth rubbing moderately over skin, and that that’s okay and the right thing to do.
I work my way up my legs, paying attention to the major nerve path and the major muscle groups (always with big, squishy gestures, not too challenging, but very tissue-mobilizing.)
I go back to my knees a couple of times, where the main effort is to mobilize the circulation and draw away the swelling.
I work on my low back and hips until the inclination to spasm turns off. I tell them to take it easy, just let go, you’ll know when it’s time to contract, now settle down.
Then I lean forward to dip my arms and work on them, with somewhat gentler gestures. Since I can’t remember just what normal sensation is there, I look for overall warmth and better mobility in my forearms, with touch signals as close to normal as we can get.
Part of the idea, obviously, is not only to re-normalize my skin as much as possible, but to improve surface circulation, so that as much magnesium as possible can be taken up by the troubled tissues.
Once I have squishy-massaged my arms from fingertips to collarbones, I do a quick scrubby pass on my back (where I used to get symptoms, and don’t want anymore)…
And then I get the Calgon experience, lying back in a warm bath, feeling alive and remarkably well, with nothing to do but enjoy myself until the water cools.
Speaking to my brain in a way it can’t ignore
Health professionals dress it up in fancy words, but this is what brain plasticity boils down to: our brains take in messages that are so simple and so primal they slide in below the level of words. The way to push back against that plasticity and make it go the way you want, is to address your brain in ways that are simple, primal, and slide in below the level of words – even if you use words at the time. Even in spoken exchanges, remember, 90% of the communication is nonverbal. This is true when we talk to ourselves, as well as others.
With enough persistence, and a persuasive enough message, the brain can be re-reshaped.
Since so much of CRPS’s maintenance relates to the brain having been reshaped in a distorted way, part of the task is to reshape it into a healthier structure.
Dr. S. V. Ramachandran’s work on mirror therapy and lens therapy for people with amputations and other limb pain problems led the way in brain plasticity work, highlighting the very powerful (and nonverbal) effect of visual input on brain remapping.
There are several other ways to do this, including forms of brain retraining such as hypnosis, biofeedback, meditation, specific and clear visualization of painless movement (which, if done clearly enough, can cause brain activity nearly identical to the real thing) – and, naturally, using tones of parental imperative with your own sensations.
Speaking to my body in tones of loving maternal authority, I find, is remarkably persuasive.
Why I start deep and work my way out
I find that it’s often easier to start with deep tissues and then address the surface issues. It sounds weird, but it’s often easier for me to get past the surface sensations when I’m reaching into the muscle and fascial layers, and then, when the deeper tissues are responsive and the blood is flowing through them again, it’s a lot easier and more productive to work out the surface sensations.
Conversely, if I start with the surface sensations, I may not get far enough to be able to dig in to release and mobilize the deeper tissues. Getting halfway through surface pain leaves my body a lot more sensitive to intrusions than just charging in and starting with the deeper tissues.
On the other hand, there are times when the surface simply has to be dealt with, or there’s no chance of getting to the deeper tissues. My left calf was like that when I first wrote this, though it has improved a lot since then.
YMMV. Each of us is different. That is part of what makes CRPS so interesting, and at the same time so darn hard to treat.
In mobilizing tissue, the washcloth provides traction against my skin, so I hardly have to use any hand strength at all. This is important, because if I had to rely on my grip to get hold of the tissues, this would be totally out of the question.
The water neutralizes a lot of gravity, so it’s easier to control a limb you’re massaging. I can squish the muscles with either one hand or two, boof them against the bone, and jostle them around.
I can mobilize a lot of tissue with very little effort, if I use a washcloth in the bath.
I figure I should spend at least a solid 20 min. in the tub, to absorb as much as possible of the magnesium, the warmth, and the chance to melt all the little knots out of my brain. It’s not a bad prescription. Not bad at all. There is always considerable improvement, and sometimes it makes me feel almost completely well.
With some relief in sight, I can admit that being on the road somewhat underequipped and jnderfunded is really hard. The overnight options, as I learned in Centerville, are fraught with the potential for devastating toxic exposures. Packing and unpacking dvery day is painful and an egregious time sink. The solitude doesnt bother me but the lack of distraction does. The constant, relentless struggle with tbis poor body leaves the words “frustration” and “hovering bitterness” feeling hopelessly inadequate.
I’m supposed to create a budget fod implementi g the CRPS: Art & Spirit projdct. I’m much mord clear about what ig will need to include. Good information to have.
I’m either half a day ahead of schedule or half a day behind, and I’m honestly not sure which. It’s roughly another 5 days to Denver, and with my sweetie’s troubles slowly and expensively resolving, it’s probably best not to try to rush, but to let things unfold.
Mind you, an hour’s reiki this morning might be helping me think that way.
Badly as I want to be there already, snuggled up to him and brainstorming, here I am …
My room has a fog of mildew which stopped me on entering, but I paid before asking to see the room, so I’m stuck. I can’t remember where the AC power cord is for the car’s air filter, though I may have tossed it in a burst of mindless efficiency before leaving.
The window is wide open while I do laundry on the other side of town, so we’ll see if that makes enough difference. If I wake up brain-dead, I’m sure you’ll hear about it.
Despite good energy and good progress, I decided to reef it in and stop early tonight — largely because I’m out of long-sleeved shirts, and needed to save arm-time for dealing with that.
I stopped here, precisely, because I had mail forwarded here to me at General Delivery — a system that actually seems to work. It included my permanent Massachusetts driver’s license (which might be handy after the temporary one expires) and a really lovely card from one of the really lovely people I’ve met on this trip. A wonderful cherry on top of a rather good day.
It occurred to me that I haven’t discussed my accommodative strategies much. Here are a few things I’ve done, redone, and learned on the way: Grabbing the wheel
Those of you who know CRPS well know that vibration is absolute hell, and a steering wheel is a big vibrating thing that’s made to press against the weakest, most pain-frazzled tendons in my entire body. So that had to be dealt with.
I’ve learned, from all my adventures with tools when I lived on the boat, that no amount of padding will make up for harsh hardware. So buying a vehicle with the lowest possible level of wheel-vibration in the first place was a major consideration.
My car, Henrietta, is a Toyota truck:
… but it’s built on a Camry base:
This means it has a much more forgiving frame than trucks and truck-mounted SUVs (though it can still tow 5,000 pounds!) and it handles the road very gracefully.
I’ve learned through many years of athletics that gel provides the cushioning my body likes best. So that was the next thing to go on:
That’s extra-thick gel-padded bicycle wrap on the steering wheel.
(And, incidentally, that’s the driving grip I use half the time. Holding the cover, rather than the wheel, nearly eliminates vibration altogether, and it’s very easy to grab the wheel if I need to dodge.)
Years of nursing and my own experiences with increasingly, um… responsive skin have made me a HUGE fan of good wool. It breathes even when wet, pads even when squashed, and if you keep your eyes open, you can find wholesale prices on new sheepskin (– and get sturdy sweaters of cashmere, merino, or alpaca for $5-10 at the right Goodwill stores, but that’s another post.)
In Massachussetts, I live near the Sheepskin Outpost on the Mohawk Trail, and I lucked into a sale there. That got me:
– The steering wheel cover, to provide more padding and keep my hands off hot rubber; – The seatbelt cover, to keep the edge of the belt off me and keep the skin on my shoulder and chest aired; – The seat covers, which I wound up getting for half of wholesale, because they’d just bought the stock of a company that went out of business and had more inventory than they could afford to store.
Boy, did that ever work out for me!
Covering my can
This is about traveling with disability, so here’s some physical reality.
I started megadeath antibiotics a few days ago, and the first symptoms are making themselves felt. Kefir just isn’t enough to save my skin.
My very favorite brand. I’m getting nothing for saying so, but I’d like that to change 🙂
Also, I’ve really been having trouble getting the circulation in my left leg to behave.
Today, in the middle of my day, I had a brainstorm that would minimize the reduction of circulation to my legs and maximize airflow to my antibiotic-ravaged sit-down.
I swapped my underpants for my white silk long-john bottoms instead, and decided I could just wash out the silk each evening and hang-dry it overnight. Besides, the extra layer kept the chill from cutting into my leg every time I opened the door.
Tonight at 6:22 pm, my left leg is feeling better than it did at 2:22 pm, when I made the switch — despite a couple of hours in the car and far too little activity. Who knew such a little bit of material could make such a difference?
And I’m happy and relieved to say that the parts my undies have to cover are doing better, too. I had no idea that white silk was so healthful.
No more elastic around these legs. It’s too bad, because I’d just stocked up on undies. But of course, I got them on sale. It could have been worse.
Gratuitous toilet humor…
I stopped in a gas station that had the kind of bathroom I grew up thinking of as a gas station bathroom. It’s not chair-accessible (in fact, there’s hardly room for a standing person to turn around in) and the tile might be original with the building.
However, in a totally novel approach to graffiti, this gas station found a new use for the wrongest possible shade of brown paint:
I’m happy to say that it has been an otherwise fairly uneventful day. I’ll have to repair the male connector that activates Oliphaunt’s tail-lights, but it’s taped up and will do until I’m somewhere warmer and hurting less.
Heading South was a good move. It was bitterly cold on I-80. It’s getting more bearable every 50 miles.
I’ve discovered that not only stopping every hour and stretching, but running in place for a few minutes — until my whole body starts getting warm — really makes a difference.
Exercise not only improves circulation and oxygenation, it helps stabilize the autonomic nervous system. This is my substitute for a 20 minute walk at every break, which is rarely realistic at highway rest stops.
I got 4 hours of driving time today, which was my target amount. Considering I’m in hard recovery from the previous 36 hours, that’s pretty good!
Well away from Pennsylvania’s peculiarly slimy water, here in roaring downtown Ashland, Ohio (you can blink without missing it, but don’t blink twice, or you might), I’m curled up in a rather luscious little Super 8. (I did say my needs are simple…)
View Larger Map The bath overflow is halfway up the tub, leaving a depth suitable for a footsoak. I tied a couple of loosely folded tissues into the plastic bag they leave in the ice bucket, stuffed it into the overflow gap, and it blocked it completely.
I put about a pound and a half (~3 kg) of epsom salt into the bath, and had a looooovely warm bath. My spine and hips and legs and arms are sooooooo much happier now, and I can bear to be inside my left leg. The thought of doing it again tomorrow is bearable, and that’s all I ask.
My sweetie is safe and well, my last lovely hostess’s internet is up and running, and I am warm and at rest. Life is good.