As I’ve said before, much of brain-retraining has to do with speaking to the primitive parts of the brain in ways it can’t ignore.
Being overwhelmed is very common these days. So, this tool is helpful for far more than just my fellow painiacs. I originally laid this out for someone else dealing with very different issues, and realized as I did so that it was a darn good tool and I’d have to remember it for myself. It has already been a help to me, so I hope it helps others as well.
The State of Overwhelm
I can tell when I’m in the state of Overwhelm because life is just a big old mess of decisions and problems and unresolved issues which are so toweringly massive they stop making sense. My usual ability to sort and prioritize and manage information freezes up, and my brain skids off into the ditch.
Once I’m in Overwhelm, it’s unreasonable to try to reason my way out of it in my usual way. Each thought is blocked by half a dozen issues backed up against it.
I’ve got to simplify. Not just that, but I need to SUPER-simplify — break it down into binary questions — that is, questions with only one of two possible answers. It’s the only way I can start managing the pile.
(What follows is a technique used in several disciplines. I’m avoiding jargon and simply using the words I use in conversation.)
The roadmap out of Overwhelm
When I was rebuilding my credit, the first thing to do was to figure out what I really owed, and what someone else was supposed to pay. This is a good template for dealing with Overwhelm.
First, whose job is it, really?
When I get overwhelmed, it’s hard to tell what’s my responsibility and what’s really someone else’s. It feels like this:
All the jobs are kind of muddled around in the space and there are too many jobs and not enough space.
When I draw a mental barrier between the two, things suddenly start to clear up:
Notice that, at this point, I don’t need to know who the “someone else” is; the first step is to be clear about whether it’s my job or not.
Managing my care?
Ordering tests and prescribing meds?
Testing those meds on my system, tracking their benefits and drawbacks, and updating the prescriber?
Keeping the dishes clean?
Keeping the outside steps de-iced?
(It’s my one outdoor job, and my partner does everything that I can’t and a lot that I shouldn’t, so I bundle up and take care of the steps without a whimper.)
Second, is it something volunteers can do or is it a professional job?
This is an important distinction.
When in doubt, upgrade.
Take care not to abuse the skills of your volunteers. You may know lawyers, counselors, accountants, and so forth, but that doesn’t make it right to ask for free professional services from them, except under unusual circumstances.
If those who help me out aren’t being paid (either by an agency/employer or by me), then they’re a volunteer, regardless of the skills they have.
I tread as lightly as I can on my volunteers. It’s an important long-term goal not to alienate them, but to keep them comfortable with me and happy to stick around.
The corollary is, I have high standards for my professionals, and hold them to those standards with all the clarity-with-courtesy I can manage. I have no hesitation about firing someone who consistently fails to measure up.
I put a lot of legwork into choosing my doctors. Here’s an overview of the process and links I used a few years ago: How I find my doctors
It’s certainly worth the time and effort to find good people who can do justice to your life and your needs. The question is whether you can find the slack. I hope so.
Fix the heater?
Put us up for a night until it’s fixed?
Give hugs, tea, and sympathy when I’m recently bereaved?
Train me in how to get my brain to reprocess deep pain (and the staggering scope of loss associated with it) without short-circuiting?
This is definitely not for volunteers; too much knowledge about neuropsych and too much investment of time is required.
Professional level brain & mind care
For some things, talking to a friend, doing something strenuous, or meditating a lot, is enough to allow a person to heal heart and mind. Life itself is generally a good therapist.
Some things are too complex, too deep, or too dangerous for amateurs. Despite our longstanding social taboos, people with recurring trauma (like central pain or abusive relationships) or PTSD (like survivors of war or child abuse or those who’ve been through worker’s compensation or disability applications on top of a devastating condition) are right and smart to get highly-qualified care for resolving the damage that these things do to our minds and our brains. The damage is not imaginary, and sheer force of will is not a great tool for healing it.
It CAN be healed, even the worst of it. It does NOT require chewing over the past; in fact, that’s often avoided in modern trauma counseling, because that can do to the PTSD brain roughly what our recurring pain does to CRPS brains.
Some techniques DO re-map and re-train the brain to make room for more stability, more healthiness, and move even a CRPS’d brain closer to a normal state.
Less pain! More joy! Less instability! More abilities 🙂
Some keywords for finding relevant mental health professionals: trauma-informed, PTSD, pain psychology. These are jargon terms that usually indicate the professional understands how these profound experiences affect our brains, and how that can be rewound or reworked to a better state.
Another thing you can do
It helps to vote for legislators who see the value in health care, including mental health care. Conservative estimates say that each $1 spent on care saves between $10 and $100 in downstream costs (ER visits, health costs, police activity, lost productivity, lost wages, family impact, etc.) Middle-of-the-road estimates place the savings much higher.
Something to think about, in times like these.
Find your legislators here and let them know what you think:
In the US, here’s where you find national, state, and local legislator info: www.usa.gov
This is one of several blog posts I drafted late last year and got distracted from.
This isn’t the duckiest or most amusing one to read, but it’s so important for so many that I’m posting it anyway. (My mother will probably want to give this one a miss.)
This level of fundamental-ness has a certain appeal in the depth of winter.
Fortunately for me, I don’t have too much trouble with existential questions. At a certain point, when everything I thought defined me had been blasted away, and in my mind there was not a single structure left that held a fragment of my old self, and all I saw stretching away to the mental horizon was blasted mud and broken stone and shapeless lumps and rot… I asked myself, “None of ‘me’ is left. Who am I?” And I realized that something was standing there, doing the asking.
That was my answer: I’m what is left after everything has been blasted away. I’m the immanent awareness, unable to be seen or described, simply because only less-permanent things can be seen or described.
As I think about that last sentence, I realize why objects lost their fascination for me. It was weirdly easy to get rid of gorgeous and glorious things I could no longer afford to keep. A couple of them I still miss, like my old bedstead (birdseye maple, passed down from my grandmother), but very few.
Things did get worse for awhile, and only curiosity kept me alive. (I simply had to know how the story went.) It propelled me through the work of surviving when my body had failed.
Angels appeared just before it was too late — several times; my life was a solid group effort — and eventually I fled the area and got my disability check (yes they were related) and could afford to survive. I have some photos that seem ethereal still, I look so nearly gone, smiling back from the edge of the grave, happy I don’t have to take that last step.
As usual, lately, I’ve wandered off-course.
My ability to track a tale (remember I survived the impossible because I had to see how the story went?) is enfeebled. It’s barely tottering along on one of those cumbersome canes with 4 feet, too heavy to lift and too necessary to leave behind.
I grind to a halt in my post, forgetting what I started this for, but this time, I’m letting you in on the secret. This blog is not retired, and being incapacitated has not excused me before, as a flick back would show. Or even when I was blowing bubbles.
I’m approaching this winter with the determination that it will be different than the last, which was an endurance exercise — one that went on for 9 months, as Spring never sprung and my Summer was clouded by meningitis.
So far, I’m getting more physiotherapy, more outings, and even have a weekly pain group I meet with. The higher level of activity is key; because exercise is so important for healing and supporting the brain, I have to find ways to stay active, despite the obvious drawbacks for someone with roaring sensory and cardiovascular issues to leaving the house during a New England winter.
I’m pleased with that. Yay, me!
Now for the other part.
Too much exercise is poisonous, because I have a solid case of exercise intolerance. I can safely walk less than a mile, which really irritates me. It takes that long just to warm up!
Also, drawing and sketching is back to being hard work. For awhile there, sketches flew out from under my pencil like they’d been crowded in there too long. Now, it’s stick figures with bad hair. I draw anyway now and then, because it’s better to keep trying than to give up altogether.
I don’t want to exercise too little or draw badly, but I do it anyway. Why? Because there’s always an afterwards, and I still have to work on influencing an “afterwards” I want.
Meanwhile, as my ability to juggle logistics is holding ground, my ability to juggle language is slipping.
After I was a nurse, I was a writer. Before I was a nurse, I was a writer. I started calling myself a writer before the age of 10, and started rescuing and healing animals shortly after.
I’m crashing into the stupefying question: “What am I, if I’m not a writer?” I feel like nothing without that. I feel like an intrusive blob of snot on the face of the earth, out of purpose and out of place and not very pleasant to have around.
My immanent awareness looks on as my sense of self weeps helplessly. It is what it is. I am what I am… whatever that is. That will always be true, even as everything else changes.
Meanwhile, though my strength and endurance are rather better than I’d hoped, my blood pressure and pulse are less stable. One more set of variables (or issues) to chase down, one more group of tests to orchestrate, one more set of diagnostic efforts to get through, one more possible adjustment to my regime to figure out, integrate, and absorb.
By the way, that lower abdominal pain has no treatable cause. Nothing to be done but roll it into the bundle of issues (or variables) to manage and work around. Every. Freaking. Day.
This is what it’s like for me to head into winter.
A cousin and I promised each other that we’d live forever until the day we die. That agreement still stands, but gee whiz, could this be a little less tiresomely complex??
Update: And here I am, 2 months later, writing again. Still waiting for drawing to come back, though.
Digesting my food is hard work now, again. Always something.
After talking with patients, doctors, and loved ones — and, as a trained observer, carefully noticing the changes in posture, expression, and tone as I’ve done so — I’ve arrived at the following conclusion. I realize it flies in the face of current accepted usage, but there are some things wrong with current accepted usage, and I don’t mind saying so.
/SeeYarP’Yes/ is not that hard to say.
No, it’s not proper to call it CRiPS unless you yourself have it. This is partly because “crips” is a term of abuse for disabled people and using the term for a particular set of disabled people won’t change that, and partly because Crips is the name of a violent organized crime group originating from Southern California. Neither is an appropriate form of address for those who have the most disruptive and intransigent pain disease known to science, and can’t perpetrate violence because of the devastation it wreaks in their own bodies.
Those who have this disease sure don’t need to be subliminally messaged with either association.
I understand that young docs are being trained to use the term in order to remind themselves that it is, in fact, a disabling disease. My view is that, if you’re smart enough to graduate from medical school, you’re smart enough to remember that disruption of the central nervous system can be pretty freaking disabling, in CRPS as in spinal injury or Alzheimer’s or anything else that disrupts the normal structure, chemistry, and behavior of the central nervous system.
The fact that the current name focuses on “pain” is a problem of nomenclature, which will change again as it often has since the year 1548 when it was first described by Ambroise Paré, father of forensic medicine and physician to the French court at the time. (Look him up — great guy. Prefigured that outstanding physician and gifted schmooze-meister Dr. Silas Weir by over 300 years.)
CRaPS, as in the game of chance, is not recommended. It sounds like a vulgar term for bowel excretions, which is — if possible — even more inappropriate. It’s certainly a “crappy” disease, but having said that, it’s time to move on and not keep reminding someone that they feel (and believe they look) like shit.
Of course your CRPS patients say they don’t mind. Check the power differential; their ability to bear to live is in your hands, doctor/loved one, so they’re highly motivated to be nice and go along with anything that doesn’t involve an immediate threat. They want you to feel good about them, so they will laugh along with you, however unreal it feels.
Have some decency — don’t call them or their disease CRiPS or CRaPS, even if they say it’s okay. They don’t need to feel any worse than they already do.
The CRPS patients can call it whatever they like, because only they know how bad it really is, and have the right — and need — to cuss it now and then.
/SeeYarP’Yes/ is not that hard to say. It’s only 4 syllables, like “pain diseases” or “really bad day.” It’s 20% shorter than the word “dehumanizing.”
This moment of intellectual — and emotional — honesty has been brought to you by a nightmare I woke up with this morning. My nightmares are a direct result of my disordered central nervous system, which can no longer process things normally and has to roil around and tear up the pavement in between the constant push-back and re-organization that takes place in my waking state.
It’s pretty crappy, not to mention crippling. But I rise above it, yet again, as I intend to do every day until the day I die. I sure appreciate anything others can do to avoid making that harder.
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.
Remapping and the primitive brain are key concepts that come up often for people with chronic pain — though we don’t always know it. These underlie some treatment strategies that seem, at on the surface, anything from absurd to cruel from the perspective of the stressed patient. They also underlie a couple of those chronic misunderstandings between medical people and non-medical people, which are especially painful when the non-medical person is a chronic pain patient. I hope this will go some way towards creating better communication between palliative-care doctors and chronic-pain patients.
First, I’ll go over a few fundamentals. Naturally, I’ll translate the dense stuff into Plain English.
Basic brain structure
The brain has sections which have different jobs, but communicate intensely with the others. It’s impossible to view them either as entirely separate or entirely connected; they’re simultaneously distinct, and inter-linked.
Providers, I’m going to oversimplify. Be warned.
The hindbrain, or medulla and cerebellum, manage the business of pulse, respirations, and the kind of moment-by-moment activities of survival we don’t even think about. The cerebellum and cerebrum take in information about our environment, check for reflex response, compare it to learned and instinctual information and decide what to do about it. The cerebral cortex is where we start thinking we’re in human territory, because this is where much of our actual thinking takes place, linked into deeper structures in order to turn into words and deeds. Our thinking brain is very much in the minority and, whether it knows it or not, conscious thinking only happens on top of a great deal of unthinking response which has already happened.
That’s the key, right there. The thinking brain is never isolated, even though we sometimes act as if it can operate alone.
Think about the meaning of the word “objective”, then think about how that can possibly apply to thoughts and perceptions channeled by a mind that’s driven by unackowledged forces at inaccessible levels. Objectivity is only an aspiration, not a rational goal, but that’s too often forgotten or ignored.
When scientists forget this, it explains a lot about conventional medicine’s blind spots, certain doctor-patient miscommunications, and many crucial limitations of scientific method.
When the rest of us forget it, we’re already reacting on the basis of the primitive brain’s unthinking push. We lose our capacity for any objectivity right when we need it most.
The central nervous system (CNS) is “plastic”, a term in Medical Jargon which means that it morphs and changes to meet the requirements of whatever the CNS thinks is going on.
To be more precise, the CNS doesn’t change the shape of its cord, lumps, and lines, it changes the tasks (and pertinent chemistry) of sections of cord, lump, or line, when ongoing survival seems to call for it. The term for that morphing of purpose and chemistry is “remapping.”
During fetal and childhood development, the brain and spinal cord develop into certain chunks, and those chunks learn to store and pass along information and signal responses in predictable ways. Sounds, colors, sensations, Mom’s face, Dad’s scent, sibling’s voices — these all get processed in, stored for future reference and retrieval. The information finds its home in the CNS while the brain and spine build roads and rails to carry the signals on.
In Medical Jargon, this arrangement of storage and signaling is called the brain map. Unlike most other disciplines, in neurology, the map IS the territory, and mostly it works pretty well.
Therefore, a healthy brain has a normal map of the body, including how it signals normal needs and how to meet them. As the body, signals, and needs all change, the map gets re-drawn, and that’s how the brain and spinal cord get remapped.
This is appropriate in the developing years and in times of great change when we need to adapt. Brain plasticity is important and exists for good reason. However, in chronic pain, especially with central sensitization, it goes overboard.
Thanks to the remapping that happens with chronic pain, the pain signals can’t stop because the chemicals that carry the signals change, so the old pathways aren’t even accessible to them. You know how trains can’t use roads, and cars can’t use railroad tracks? It’s a bit like that. Your spinal cord/brain has blacktop where it used to have rails.
In central sensitization, it means that normal signals — excitement, touch, sound, lights — can get processed, not just as emotions (wow!) or touch (hey!) or sound (oh!) or light (ah!) signals, but as pain signals (ow!), because the brain’s remapping means the normal ways of processing feelings, sensations, etc., have been partly overwritten — sometimes completely erased. It’s all pain, showing up right there in the spine and brain; pure, gruesome pain. It doesn’t come from anywhere in particular; it’s just the essence of pure pain.
Yeah, it sucks.
This is why people with chronic pain and central sensitization get so quickly overwhelmed by things that used to be fun, like music, parties, dancing, socializing, and so on. The inputs, however delightful themselves, just get shunted into the “pain” tracks right in the central nervous system.
It’s not about not wanting to have fun! It’s about not being able to bear the unnaturally high price, which is so high the fun is usually lost.
When a normal person sees one of us at a party or other event, it would be totally appropriate for them to fall to their knees in admiration and gratitude, because our level of dedication to the events we do attend is truly special.
Not that anyone ever does, nor are they expected to … but it would be perfectly appropriate if they did 🙂
The primitive brain’s role in all this
The primitive brain is one of those terms that changes meaning depending on who’s using it. So, to be clear, I use it here to mean the parts of the brain that don’t use words a lot, and that underlie all the parts that do. Very simple.
Since pain is a survival function, it has deep roots in the primitive brain. This is kind of too bad for us, because once we understand the concept of remapping, we want to learn how to re-remap, so we can push our brains back closer to normal. The catch is, this is all rather intellectual, and pushing back on pain’s remapping means that the re-remapping needs to target a lot of primitive brain, which is primal, not intellectual. The approaches that have been developed reflect this. They’re hard to keep up with, because they don’t always appeal to our higher personality characteristics. (That is, they can be repetitious, trivial-seeming, and dull.)
Let’s take a look at the underlying concepts here, so the ways we communicate with the primitive brain make more sense.
The primitive brain relies heavily on nonverbal cues. Take a look a few paragraphs back, where I was discussing how sensory signals turn into pain. I’ll repeat the section here:
…emotions (wow!) or touch (hey!) or sound (oh!) or light (ah!) signals, but as pain signals (ow!)…
See what I did there? For each type of signal, I made a pertinent sound, and drew attention to that sound by adding an exclamation point. I was totally talking to your primitive brain, there.
Most of us find we talk more easily with people who don’t have arms crossed or brows lowered. That’s the primitive brain noticing the lack of withdrawn or threatening cues. Body language is 90% of visible communication, just as tone is 90% of audible communication, and it’s rarely noticed by the cortex at all — it’s primitive brain stuff, and humans respond as reflexively as Pavlov’s dogs.
Color (for those who can see it) sends powerful signals to the primitive brain.
Interior decorators may suggest painting the marital bedroom red, because red makes the primitive brain tend to feel passions more strongly and this can improve the sex life.
Some prisons use grey (which is depressing, and slows people down) or pink (which tends to promote calm. The nice theory is, it’s the first color we saw, as light penetrated mother’s stomach wall while we were in the womb. The mean-spirited theory is, it makes grown men feel like little girls; rather than learning to control their impulses, they get emotionally emasculated. Not corrective at all.)
Here’s a classic example of good intentions: In 1991, the administrators at my hospital decided to paint the walls of our HIV unit yellow, in a conscious effort to cheer the environment and counteract the depressing nature of early-90’s existence with HIV. They should have involved caregivers in the choice of shade… after only a year, the one they chose looked just like the serous fluid oozing from a skin ulcer. Still, they meant well.
Movement is powerful. The movement we see around us and what we do, ourselves, gets plugged in very deep indeed. Movement involves the most primitive parts of our brains. Because so many of us become limited in our movement due to central pain disease, what movements we do make, and even observe, become even more important, more concentrated.
Very primitive indeed. That’s why these things can be so effective.
Putting several primitive-brain cues together: food, pills
Eating is comforting to the central nervous system for all sorts of reasons, one of which is that taking something, putting it in your mouth, and swallowing, is something we first experienced before we were even born. Also, eating good foods and taking effective medicines makes us more capable and less miserable, because of what happens afterwards to our chemistry — a powerful reinforcement of that primal reward.
The sensation of feeling better is even more compelling when being alive is unbearable at baseline.
Freud went to town over this instinctual action, but he wasn’t completely wrong.
Putting hand to mouth and swallowing is one of the most powerful primitive-brain signals we habitually engage in. (Realizing this makes me think about how I eat, fidget, and generally do hand-mouth things. I’ll be less mindless about those actions — at least for awhile — and try to give my primitive brain its due.)
This is where we get to one of the things that seems so cruel from the patient’s point of view, but makes perfect sense to the doctor seeing it from the brain’s point of view. I didn’t really get it until mulling over my recent visit, so those of you who’ve seen me saying something different before, I apologize for not having thought it through. They might not be wrong!
This was not easy to write, but for the reader, who doesn’t know what’s coming until you read it, it could be triggering. I want to insert a reminder to my fellow painiacs, for whom black-and-white thinking is very easy to fall into… Take a breath, let it out slowly, and keep in mind that there are no absolutes here, just lots of context and a few guidelines. This can be pretty tough material, but you are way, way tougher.
What we can do about this
Now that we have some idea just how powerful the primitive brain is, how easily it remaps itself once central sensitization takes hold, and how powerful the act of taking and swallowing things that make you feel better is …
Ideally, think long term
We can see why, when doctors don’t want us to ramp up our daily meds when the pain gets worse or to become too regular about taking our breakthrough meds, these things worry them. It’s too easy to program the primitive brain in pain. They see it as powerful signaling that sets the brain up for needing an outside chemical push whenever it starts acting up.
Pain patients come in all sorts, but can broadly be divided into the passive care recipients and active care participants. The latter tend to have much better prognoses and quality of life, but the nature of bitter central pain tends to suck everyone down into the former approach now and then.
Thus, the doctor has no way of knowing if the patient in front of them is currently able to be an active participant and do their disciplines first, or if they’re sufficiently overwhelmed and disabled to just reach for a pill (ow! — mmm!).
None of us is immune from mental exhaustion. However appalling their terminology may be, good docs’ instincts are founded on caring for our greater good, even when we can’t think that far ahead.
Unlike acute pain, life with chronic pain requires us to take more than one approach at the same time. (Insurance doesn’t much respect this fact, which makes it all the harder to manage!) We aren’t expected to recover, unlike those lucky so-and-so’s with ordinary acute pain, so we have to think in terms of having a life while thinking ahead to being able to live the rest of our lives in a bearable state.
This means that all of those primitive-brain approaches and re-remapping tools — eating well, keeping moving, mental rehearsal, coloring, internal arts like meditation and yoga — PLUS individually tailored pharmaceutical therapy and occasional procedures — have to be part of the picture.
Doctors can help us, but they can’t save us; we have to do as much re-remapping as possible, and contribute as little as possible to the pain’s remapping. We aren’t talking about a couple of days or even a couple of years; we have to be able to keep life as manageable as possible for however many years or decades we have left.
The painiac’s barriers to success
Considering how devastating it is to think that we’ll most likely be dealing with this all our lives, our own brain-care requires us not to think about that, because so much perfectly rational despair is waiting when we do.
It requires thinking years ahead on every aspect of our treatment. This is more than usually hard for us to do, becuase thinking too much about this aspect of our future is so counterproductive in other ways.
Nobody’s brains are set up to stay detached and rational when our nerves are running riot with pain signals and our bodies are just exhausted with it. It’s okay if this seems insanely hard, because it IS insanely hard.
This is not a normal situation! We’re rational people stuck in a complex web of relentless, irrational challenges, and we are obliged to prioritize our current survival. Just do your best! It’s all you can do!
Personally, some days, getting out of bed and doing my tea-snack-pills routine is all I can manage, and I have to be glad of that. (Things could be worse.) I realize that, good as my disciplines (and consequently my perspective) are, they aren’t always up to the job of keeping this mile-high view. Also, I’m a brain-hurt human, and I can’t necessarily keep track of all the myriad things I’m supposed to do.
This is why I seek out and travel to such astoundingly good doctors. I need them to DO what I can’t, as well as to KNOW what I don’t.
Taking more pills and feeling better is powerful retraining. Yet… There are only so many pills in the world, only so many chemical boosts that can do any good at all.
What a set-up!
Built-in pain control and building up tools
On the other hand, remember that we have other tools available to us. For one thing, the brain/spine complex has many ways of managing pain and distress which can be leveraged by a conscious and determined owner of that system. These ways, from the descending inhibitory pathway to oxytocin, endocannabinoids, and endogenous opioids, can be consciously operated and can be nudged by what we take in and do. (Go ahead and google the heck out of those terms. I don’t have enough spoons left to dig up the best links.)
They take practice to master. Not surprisingly, developing these skills can be repetitious, trivial-seeming, and dull.
Just like building a muscle, it takes work to build — rebuild — and keep on building — the ability to counter pain in ways that use what your body has already got.
Letting the primitive brain slide into taking a pill for increased pain as Plan A or B puts the kybosh on those other methods. They wither, like unused muscles.
The pain patient is left with fewer and fewer alternatives, as the years go on.
Yeah, that REALLY sucks.
The one member of the doctor-patient team who isn’t currently losing their mind to disabling pain has the perspective to think ahead, and to realize that NOT retraining the brain to go with “pill as Plan A” is crucial to ongoing survival.
They aren’t always tactful about it, of course (!). They learned it in terms of Pavlov’s dog, and nobody likes being compared to a slobbering animal, so the usual explanation is deeply offensive. I hope they’ll figure that out and start using terms like “primitive brain” and “primal reflexes” and so forth, rather than “operant conditioning”, let alone “Pavlov’s dog.” Sigh.
This conflict of ongoing needs and current distress often winds up painting the doctor-patient team into a corner: the patient’s desperation may lead them to remap their brain to need something it can no longer make for itself, while the doc is not able to communicate real concerns effectively (between their own language gap and the patient’s neurological chaos) but winds up patronizing the patient to a standstill.
Where to go from here
So, when your doc says, “Don’t pill up,” this is why. They’re worried sick that you might be reaching for pills as the easiest fix — just like most normal people do. Just as they do, when they’ve got an infection or allergies. These days, reaching for a pill to solve a medical problem is the normal thing to do. That’s why it’s a natural assumption for them to make.
I know my readers are a lot better informed and more skilled at self-care than most people. So, if you find yourself having this kind of conversation with your doctor, pause a moment, take a breath, exhale slowly, and explain:
You understand the concern about screwing up your body’s reward-signaling,
You’d like them to know you’ve been using your alternate methods for days/weeks/whatever, and
The pills were the last ditch effort.
That’s exactly what breakthrough meds and med increases are for — last-ditch efforts when our home remedies and personal strategies can no longer meet our minimal requirements.
You may have to say this every time. (I do.) That’s okay; it shows they think of your survival before they remember their manners. These docs are seriously worried that you’ll wind up beyond the ability of modern medicine to do anything for you. (We want docs who worry for us!)
Some of us wind up there anyway, as we’re all well aware from our networks. Our best bet (though there are no guarantees) is to explore, discover, and refine the set of non-pharmaceutical management techniques that offer each of us, individually, the most manageable level of trouble/expense which give us the best results. We’re all neurologically different, so we have to develop our “toolkits” on the basis of what works for ourselves.
Suzanne Stewart (among others) at National Pain Report, intelligence diligently applied;
For the multiply allergic or drug-problematic, Taming the Beast, out of Canada, for more on home management and strategies that are as nontoxic as possible, discussed as pleasantly as possible.
These blogs all discuss strategies that are compatible — or at least not incompatible — with current science.
In the end, what tools matter to you is what tools work for you. You don’t owe anyone any explanations for those. It’s your body, your life, and you who have to face the consequences of every strategy used in your case. Might as well own it.
Other “ancillary” or “alternative” therapies
Once you include strategies and therapies outside your doctor’s bailiwick, it’s not fair to ask the doctor if they think it will help. They’re already doing what they think will help. Conventional mainstream medicine names these techniques with terms that specifically put them off to the side, because that’s where they believe these things belong, so it’s normal and appropriate for conventional practitioners to have a bit of trouble making sense of them.
For the pain patient, these strategies are likely to take more time and attention than conventional care, but only because they are so necessary to living with central disruption and pain.
As long as these therapies don’t disrupt or interfere with your medical care, then the physician’s opinion is not relevant; your experience with that therapy is.
This brings us to a form of intellectual integrity which many well-educated people have trouble with. Ready? Here goes:
Others’ belief systems are not relevant to your personal experience of less pain and greater function.
Even if the “others” are care providers, and even if their belief systems are based on the current state of our limited and ever-changing model of science.
The only proof we need, here at the sharp end of reality, is what kind of good something does, and what kind of bad it doesn’t do, for the only body we’re in.
If it helps, doesn’t hurt, and you can access it, success! It’s in your toolkit!
Below is a short table of “alternative” therapies and modalities I’ve used with success, with annotations about what I learned about how to make the most of my benefit from them. (With apologies for the weird formatting.)
Essential. Our brains are the most susceptible organ in the body to deficits. Air, food, and water underlie everything our brains do. Immune activity in the gut is becoming a hot issue for study, as the results can be multi-system and devastating. Nutrition is the first and most important step, in my view, to managing a life with serious illness. Eliminating or reducing immune triggers, maximizing nutrition within your practical limits, and being able to absorb and process your food, are key to getting your body to work right again.
As those of you who’ve checked the science know, nerves can’t work without mitochondria, and mitochondria can’t work without antioxidants. The only known preventive strategy for CRPS is vitamin C in frequent small doses for 2 weeks before surgery and 3 months after surgery or trauma. Vitamin C! So yes, nutrition is the base of everything. This also means, beware! Nutrition can interact and have side effects. Brassicas and soy can deplete the thyroid. Co-Q 10 interacts with Lexapro, a common neurochemical modulator used for central pain and depression. Check with your pharmacist.
The practitioner needs long experience to avoid accidental damage, plus specific training and experience with central sensitization. (I use LAc’s with over 20 years’ experience.) Patient needs realistic expectations and a pragmatic list of attainable goals: anxiety control, sleep/wake improvement, temp/sweat stabilization, digestive support, wound healing, whatever your practical concerns are.
Acupuncture is extremely sophisticated. Its methodological groundwork was being laid before my European ancestors even figured out where babies came from. Because of that sophistication, experience counts, because some of what they evaluate is very subtle. Inappropriate acupuncture can make local or central pain worse, so do be mindful and pay attention to the care you’re getting.
Can be GREAT for pain. It’s more “tunable” than many practitioners realize. If you have dysautonomia or suspect any other form of central disruption/transformation/sensitization, be sure to tell them: “Use SHK, and lots of it. CKR can be bad for central nervous system disruption.” Their likely reply is, “But Reiki goes where it’s needed; it can’t hurt.” The response to that is, “Reiki gets attracted by need. However, more than a touch of CKR can be like warming hands by pouring burning fuel on them. SHK is more stabilizing, and that’s what’s effective. CKR is great for a final ‘coat’ afterwards, but not for the main treatment.” (CKR and SHK are different “flavors” or “types” of Reiki energy.) I figured this out with the assistance of other Reiki 2 practitioners and other centrally sensitized volunteers. It’s absolutely consistent, both for in-person and distance work.
Level matters. A Level 1 practitioner normally needs to work on only themselves. If you have Level 1, consider working towards Level 2, as the rewards can be considerable. Level 2, 3, and Master practitioners can send transformative Reiki. Many massage therapists are also Reiki practitioners.
Therapeutic Touch ™
Came out of the nursing profession from a nurse-scientist who got some initial studies funded. Blood tests were so good it was unreal. Usually done by RNs. Usually helpful with pain, digestive problems, mobility, and wound healing.
May be available in-hospital, sometimes through private practice. Sometimes massage therapists get cross-certified in TT.
Be prepared for some rudeness if you tell people you use this. Its principles are founded on quantum physics (something called “signal propagation”) and conventional medicine still depends on Newtonian physics, which is 600 years old; predictable, but limited. Anyway, I strongly recommend getting competent, qualified help in working out what works for you. Hypericum perforatum is widely used for nerve pain, but it can go either way for us. It used to help me significantly but now my body flips it about half the time and it makes the pain dig in, so I no longer use it. Ignatia amara can help calm that emotional storm that comes with too much stimulation, surprise, or pain. It also eases my bursts of panic. I get great results consistently. I use Arnica pills for soft tissue trauma (which, for me, is a body-wide event), and heal in 1/4 the time with about 1/6 the pain of what happens when I don’t! Many have great results from Rescue Remedy ™; for me, it just calms my mood, but for my housemate, it brings her blood pressure down from the sky and cuts her pain. We’re all different.
As with Reiki, some say that “it can’t hurt”, but that isn’t correct for the centrally sensitized. Keeping logs of how you respond to each remedy is an excellent idea. Your diligence can result in a handful of outstanding remedies that help you enormously and very quickly.
These are the precursors to conventional mainstream medicine. Therefore, they’re a double-edged sword. Assume that everything interacts with something in conventional medicine (except possibly chamomile); know your interactions for what you use. Everything has side effects, although, with that said, whole herbs tend to buffer their own bad effects better than purified extracts. Freshness matters; potency varies. This means that, if you’re interested in the potentially vast bouquet of beneficial herbal support available, either start when you’re young and healthy with a great teacher (as I did) or find a very experienced practitioner with experience treating central sensitization.
Expect to do a lot of homework researching brands and regions and preparations, in your own defense. The market is huge and very aggressive. You are your own guinea pig, so keep track of effects, doses, potency (which you’ll have to figure by color, scent, and taste) if you’re wildcrafting or growing your own. Be wise with your herbs, and they can reward you.
Do your due diligence
As the blunt hints in that table suggest, there is no such thing as a free ride or a guaranteed fix — not even any such thing as “It can’t hurt you!”, especially when central sensitization is part of the picture.
Given all the side effects of our meds, the mistakes by highly qualified physicians, and the errors in surgery, not to mention the rank company of practitioners like Scott Reuben who get rich by urinating in the well of science, these characteristics of not being harmless don’t distinguish “alternative” methods from “conventional” medicine at all, from the patient’s point of view. It’s all risk, and nobody bears it as much as we do.
The obvious corollary is that there are highly qualified practitioners of these therapies too. There’s no substitute for good training and lots of experience, so look for those who’ve studied their disciplines long and hard, and remain enthusiastic about their field. These are the ones who can provide the best help and guidance.
Another handy fact is that there is a lot more information available on these therapies, at a much greater level of detail, to the determined pain patient. We don’t need medical school access or memberships costing thousands we don’t have, to access articles and reports (not to mention extensive fluff and pretty pictures) about physiotherapy, massage, TT, acupuncture, and any herb you care to name. Good resources for checking interactions with medication and devices are there with a little digging. The vocabulary and style is far more approachable. A bit of common sense and occasionally a friendly nudge from a cohort can help us screen out most of the rubbish.
After that, it’s back to trial and re-trial and lots of notes, the reality of patient-hood, which is based on empiricism out of necessity: WHATEVER WORKS FOR YOU IS WHAT MATTERS, NOT WHAT ANYONE BELIEVES “SHOULD” WORK.
As with medicine and surgery, the final sanity check and the final decision is up to you, the patient. It’s always up to you.
May our brains and spinal cords become more stable, less reactive, and ever closer to normal!
“Never give up. Never surrender.”
Leonidas of Sparta, Jael the wife of Heber, Alexander the Great, Queen Boudicca, Mary Magdalen, the Prophet Mohammed, Hildegaard of Bingen, Vlad the Impaler, Queen Isabel of Spain, Geronimo, Copernicus, Marie Curie, Winston Churchill, Aung Suun Kyi, Terry Pratchett, the 14th and Final Dalai Lama…
Rest and retreat, yes.
Pause for thought, please (unlike some of those listed above.)
Knowing when to acquire a sense of proportion, ideally (again, unlike some of those listed above.)
But… don’t give up. Don’t give your rightful self away.
It’s always been easy for me to be determined, but not easy to pick the right things to be determined about.
In my 20’s, I wanted to save the world.
In my 30’s, I was willing to work only on that part of it that wanted my saving.
In most of my 40’s, I was dying — sometimes by inches, sometimes by yards — and couldn’t quite save myself.
I’m 50; what a relief!
Given that trajectory, it’s no wonder that my priorities have shifted a little.
I figure that, as long as I have working pulse and respirations, I’ve got a job to do. (I suspect everyone does, but I could be wrong.) My particular job is to re-possess my physical self, and, given enough slack, help others to re-possess theirs.
Our bodies are not just machines, despite the inherent dis-inheritance proposed by Descartes (considering the body a separate entity from awareness), and the even more extreme model funded and fomented by a slightly misguided Hearst (who fell in love with interventionism, and drove the mechanical-problem-to-be-fixed model of medicine over the shifting-dysfunction-to-right-function model of medicine.)
Bodies are the media we experience life through, the means we have to respond with. Despite the relentlessly shallow concerns over appearance the media saturates our lives with, our fundamental experiences of life are not just seen. Life is an all-body experience.
Bodies are marvelously self-aware organisms on an enduring quest to care for and maintain themselves by communicating as effectively as possible within themselves, and responding as usefully as possible at every level — within the cells, between the cells, from cells to organs and back again — with the marvelously alert circuitry of the nervous system and the dazzlingly subtle chemical dance of the endocrine system drawing the whole show together.
That’s a bit more complex than just meat-sacks wrapped in hide.
I’ve been mulling the twined facts that my body is an amazingly tough, brilliantly adaptable organism, and at the same time, is an organism constantly under sieges both subtle and overwhelming. Yet it never stops trying to find a useful set of responses, it never stops signaling and listening.
It never gives up. It has never surrendered.
I admire that.
Just for grits and shins, here are a few other things that I mutter to myself over and over.
C’mon, you can do it.
Motion is lotion.
Use it or lose it.
Change or die.
That’s quite a set, when I look at it laid out like that.
Not all of them are cheerful. Sorry.
They’re all thoroughly grounded in my reality, though, and they all have had something to do with my getting this far. They are hammers and screwdrivers in my mental toolkit of radical presence, pushing back on neuroplasticity, and not settling for what this disease would leave me.
Naturally, I say these things to myself in tones of firm, loving parental authority, since it’s all about re-re-plasticizing my brain, and those are the tones it responds to.
FTR, I’m sincerely glad it responds at all. When I was in nursing school, they told us adult brains were fixed for life. I doubted that from the start, and events eventually caught up with my skepticism. Brain plasticity FTW!
I have loads of advice for surgery and invasive procedures, so I might as well park it in one place. I used to be an RN and I’ve had this monster for over 15 years so I’ll share the key things I know, and others can add more about what they’ve tried or heard about 🙂
One leg of my Holy Trinity of Healing: Nutrition, Activity, Rest.
With nerve or mitochondrial diseases, antioxidant support is absolutely critical and vitamin C is the cheapest, most bio-available antioxidant. It’s very straightforward — it basically works by refreshing and rebooting the others. The vitamin C protocols for surgeries and procedures with CRPS are simple:
500 MG per dose (more than that, and especially a fragile system will get overwhelmed and throw the whole lot away)
2 to 3 doses per day (2 doses for upper limbs, 3 doses for trunk and lower limbs)
Start up to 2 weeks before surgery
Continue for 3 months (12 weeks) after surgery
Have you had your D3 levels checked? If you’re chronically ill, do so. It’s becoming clear (finally) how crucial this is and how much of it our bodies need in chronic conditions.
D3 is critical for healing, especially joint and bone healing, as well as helping our calcium stay in bones and teeth, helping our skin, and maintaining soft tissue integrity. Get that checked when you can, but if you aren’t already taking it, get started. Something is better than nothing. Raise your dose until your serum vitamin D3 is well within normal range. This is important. The test is relatively cheap and easy to get.
Speaking from decades of clinical and personal experience, I’d add that this is the time to invest in a good, food-based multivitamin and take it with breakfast and lunch every day from now to at least 3 months after your procedure. After years of home care and being a patient myself, I have found nothing — absolutely nothing! — that speeds healing and reduces complications like really good vitamins. It’s like magic. Also, some science is beginning to emerge about the value of nutrition in handling CRPS.
I get my vitamins from vitacost.com, which has wholesale prices and lightning fast shipping, or luckyvitamin.com which has one week delivery. Amazon can sometimes meet those prices, and of course they make it very easy to give them your money.
The brands I can recommend are the capsule (not tablet) forms of:
RAW Vitamin Code (what I use), a Garden of Life line
Garden of Life “My Kind” may be good; it’s new and I haven’t tried it, but its sister line is great.
NOW is normally ok, but it’s not something I’d recommend around a procedure. They’re great for the price, but not top tier. Their multis are tablets which are noticeably harder for fussy systems to handle.
For targeted supplements (Calcium, 5-HTP, DL phenylalanine, magnesium chelates, etc.) I use and recommend (as of 5/2017) these brands:
Several other food-based vitamins used to be great but they got bought and really dropped in quality as the parent company squeezed their profits.
Several very famous brands, which I’m not lawyered-up enough to mention, are an absolute waste of money — go to the library and check out the issue of Consumer Reports where they investigated those.
Basically… don’t buy anything you can get in a major pharmacy. When it comes to meds, I always suggest discussing meds with your pharmacist, but when it comes to vitamins, the brands available to them are frauds with great advertising budgets, and they aren’t allowed to say so even if they know it.
Talk this over with a chronically ill person who is a vitamin geek, if you want more recommendations. Some health food stores have good vitamin geeks on staff. Ask around.
This is based on the 12-week period that covers most procedures and most traumatic injury-healing. This is not for everyone, it’s not comprehensive, it’s just a generic brain-dump from one former RN and current chronic patient. If you’re planning to use this as a guideline, PLEASE take this into your doctor and highlight the bits that matter to you, so you can get a sanity check from the person who’s actually aware of your particular case and is guiding your care.
If your doctor expects less than 12 weeks, smile politely, bless their optimism, and plan for 12 weeks of intensive self-care as the better part of wisdom.
If your doctor expects more than 12 weeks, BELIEVE YOUR DOCTOR. If they tell you to stay in bed for a year, then the survival path and the wise thing to do is to stay in bed for a year. They simply don’t want you horizontal for any longer than strictly necessary, so take them seriously and don’t finesse it. Just don’t even go there. They’ll get you up the very minute it’s even vaguely safe.
Since spoonies are more likely than normal people to have a longer healing period, plan accordingly and mentally prepare a Plan B that includes yet another 25-50% of rehabilitation and recovery time. For each day in bed, figure it will take 1-3 days of activity to recover afterwards, depending on your basic fitness and cardiovascular tone.
It’s okay, don’t let the numbers scare you. I just button on my pig-headedness so it faces the right way, and make myself do the long, slow slog of building back up again. It’s hard work, but the time will pass anyway, and I want to be better at the end of it.
You are not a normal patient, if you already have something like CRPS. Don’t panic; there are lots of abnormal patients out there! You’re not alone. Just plan wisely.
EARLY RECOVERY PERIOD
Early recovery is a bear, but it doesn’t last long. Some things we just have to white-knuckle our way through, one breath at a time. Early recovery may be one of them. It will pass.
At this point, a certain amount of swelling is good and helpful, because it keeps the area flushed with nourishment and growth cells.
Keep your affected body part ABOVE HEART LEVEL if at all possible, to allow the “used” fluid to drain out. Your heart should be able to push the blood up that slope (dysautonomiacs and those with existing circulatory issues, watch this closely), but your body needs a gravity-assist to help it come back down. It also helps keep the pain down. Letting a healing limb hang below heart level will usually immediately increase your pain.
This is where you corral all the pillows you can get your hands on so that, during recovery, you can park that puppy up there and put your head down to lower the bar even further.
Work out a pain management policy in advance with your doctor, so you have a Plan A, B, and C for managing different levels of pain after surgery.
If you’ve had to go to the ER for pain crises before, then ask your doctor to contact the ER and arrange a patient-specific set of interventions for you in case you have an after-hours crisis after surgery. This should ideally:
Be time-limited to the post-surgical period,
Cover both pain and infection and whatever other surgery-specific complications are most likely, and
Indicate when/whether they should call your doctor/surgeon.)
This will save a whole lot of time and fuss, and would make me feel a lot safer about the post surgical period.
Not all ERs make it easy to do that, but you’d be amazed how much silliness a bit of surgeon’s bluster can cut through. The ER will find a way to capture and recall that information all right. They just need a little push sometimes.
Speaking as an old ER nurse, I felt a lot better about treating a chronic patient in crisis according to their specialist’s or surgeon’s requirements, than us having to figure out something so fraught on our own.
Pain crisis and post-surgical emergency protocols tailored to the chronically ill patient are a huge benefit to everyone involved.
There should also be a limit on how many ER visits before your surgeon gets called in, because if you need more than one (maybe 2 on the weekend) then you really need to be seen again by the surgeon on an emergency basis, since something may be wrong with the surgery.
Bones and joints
Those of you with bone and joint trauma or surgery, please be aware that the number 1 cause of non-healing bones is… using the darn things! Here’s the lowdown on fracture (and ligament) recovery:
For the first ~3-5 days, the “callus” is forming. This is the foundation of all the healing that happens after. There is no substitute. This is when there is the most swelling, and there needs to be: there isn’t much blood flow inside bones or connective tissue, so this is the best substitute. Extra hydration (to keep things moving through my tissues) and basic nourishment, featuring vitamins, antioxidants, and digestible protein, is my appropriate dietary focus.
For the next couple weeks, “knitting” is happening. The fractured ends are reaching across the nourished gap and, strand by strand, are pulling together. There’s no hurrying this process, but it’s easy enough to disrupt it, so keep staying off it. Supplementation with bio-available calcium (food-based sources are usually the easiest for the body to get hold of and integrate) with vitamin D, magnesium, and (according to some studies) boron and strontium, can be a real help with rebuilding the bone. I take phosphorus in the middle of the day, because it should not be released into my gut at the same time as calcium, because it’ll block it from being taken in. I take calcium, D, and the other bone-building supplements morning and night.
For the rest of the healing time, the bone break is turning that knitted lattice into solid bone which you will eventually be able to use normally again. I keep up the vitamin and mineral supplementation above, and, trust me, I did absolutely whatever it took to STAY OFF THAT FRACTURE until the bone had gone through its full healing cycle.
After that, it’s just rehab. That takes patience, pacing, and diligence, plus more pain that before, but normally, with the antioxidants and hydration and pacing, it does pass and the bone and muscle are all right at the end of it.
Ligaments take time. They don’t naturally have much blood supply, so they don’t heal quickly. However, with time, nutrition, diligence, and with moving enough to provide as much blood flow to surrounding tissues as your condition permits, these will normally come back in time too. Remember to go easy on that joint’s over-flexion and strain for a couple of years, because it won’t have the old elastic strength for some time.
Organ surgery and trauma
Abdominal surgery usually requires a coughing pillow, to protect healing and allow you to cough and clear your lungs without hurting yourself. (See the part on scar management.) The nurses should set you up with one, but any small, very firm pillow — or a bathtowel folded and taped into shape — will do the job.
Post surgical care for abdominal surgery boils down to:
Keeping your lungs working well. If you can’t breathe well, then you can’t do well. Simple as that.
Keeping your drains — natural and surgical — as clear as possible. (Tips: farts are good! Poop is great! Urine is the key to life!)
Keep moving in small, frequent bursts, so you heal faster — and to help with the previous bullet point.
And, for us painiacs, we add:
Managing pain, so the other stuff (breathing, excreting, moving) is more manageable in turn, and we don’t come out of it worse than when we went in.
You will be discharged with specific instructions about food, fluid, medications, antibiotics, wound care, and so on. FOLLOW THEM.
I know — antibiotics suck and it takes weeks of probiotics and soluble fiber and maybe Senakot to get our guts back in shape. However, the pathogens that can grow in there are far, far worse; finish your antibiotics and kill them dead.Then take the time to rebuild your gut.
I’d love to be able to say otherwise, but that’s the way it is these days; we as a society have to stop creating resistant organisms, and that starts with the ones we, as patients, treat in ourselves.
FIRST 6 WEEKS
The first 6 weeks is the “knitting” part, or, in joint replacement, the part where the bones bind onto the joint insert and make it part of your body.
Keep a close eye on your surgical area for signs of infection or rejection. Be sure your surgeon discusses this in advance so you’re prepared to take the right meds (might be as simple as Benadryl and Advil) at THE FIRST sign of trouble.
For these 6 weeks, the bone care and the skin/nerve care diverge.
With bone fractures or bone surgeries, NO STRAINING OR BEARING WEIGHT on that part. Do your prescribed physiotherapy if you have any, but don’t go *one ounce* over the line. Pushing it now is the surest way to screw up your healing and have a much bigger and longer-lasting problem.
Just stay completely off the darn thing, ok? Doesn’t matter what it takes.
I’m speaking as someone who crawled to the bathroom on 3 CRPSy limbs (think walking on hands and knees over live coals with hot electric wires sticking out of them, no kidding), 5-6 times a day, for this entire length of time, due to a broken foot. It sucked, but I did it. It was a nightmare and I’d rather shoot myself in the head than go through it again, but I did it, because that’s what it takes to get the bone to knit.
STAY OFF IT. Seriously. Just STAY OFF IT. Figure out how to make that happen, for 6 (in some cases, 8) whole weeks. The time will pass whatever you do, but you’d rather have one less major problem at the end of it, right?
Soft Tissue and Scarring
I scar quickly. This used to be a good thing.
Most scar tissue is laid down in the first 12 weeks, and 50% of that is laid down in the first … I forget.. 2 weeks, or 4? Like I said, my healing rate is odd, so I’m not sure what the usual numbers are.
The first stage of scarring needs to happen as undisturbed as possible, so your tissues can be closed up and the integrity of skin and organs and so forth can be maintained. However, after the first stage (which is when the surgical splints come off), it’s time to start managing the scarring, so that the tissue comes back as close to normal as possible.
Scar tissue is more brittle than regular tissue, especially if left to its own devices. If scar tissue is managed correctly, 3 things will happen:
There will be minimal brittle scar tissue, with minimal risk of subsequent tearing and re-injury.
Regular tissue will grow in and restore normal function, circulation, and flexibility, leaving only a little brittle scar tissue.
Underlying structures, like nerves,vessels, and ligaments, will not be trapped in the scar tissue, so they can continue to function normally.
If scar tissue gets out of hand, those good things don’t happen. And then you have more problems: tearing and re-injury, stiffness and limitations, reduced function in that body part, or, as in my case, nerves and other structures getting completely tied up and trapped in scar tissue (in record time.) Any of these is a whole new set of problems with added complications waiting to pile on.
Some Occupational and Physical Therapists specialize in scar management. Stretching, gentle massage, deeper massage after a certain length of time, silicon pads, heat therapy, bead therapy — they have tons of good tricks up their sleeves.
Case study: Me
I had come out of the post-surgical splint with 4 degrees of motion in my wrist. (That’s not a typo. Check that on a protractor.) Because I was still in the acute-healing phase, the scar tissue was being laid down faster than we could manage it, and if we didn’t have substantial improvement by Week 8 after surgery, I was looking at painful splints and possibly more surgery to loosen up my wrist/forearm so I could use it again.
A warm pack and pain meds, followed in half an hour by diligent massage and stretching for 10 to 20 minutes, three to five times a day, with a silicone pad on it otherwise, was my routine for over a month. I watched a lot of movies to distract from the horrible pain and keep going, because I couldn’t take narcotics — they had hospitalized me with life-threatening side effects.
That’s probably what sealed my fate with CRPS: ineffective and even toxic post-surgical pain control followed by months of brutal rehab with continuing ineffective pain control. We didn’t have a Vitamin C Protocol for hand surgery then, so I didn’t know to take additional antioxidants, the one thing shown to reduce post-surgical CRPS.
Sure wish I’d known that then! It’s so simple, so cheap, so effective!
My wrist has never totally regained all its flexibility, but it used to be freakishly flexible, so it’s technically all right now.
The caution and care you take in these first six weeks will pay off HUGELY. Put your natural stubbornness and self-sufficiency (which most spoonies have a LOT of) in the service of your healing for a month and a half, ok? 🙂
SECOND 6 WEEKS
Now, if things have callused well and knitted properly, the second half of the “12-week healing circus” gets more interesting. This is when you gently and persistently put that part of your body back in service, and remind the nerves there that their job is not to be hysterical and overly dramatic, but to report only/exactly what’s really there. Seriously. It’s a bit like self hypnosis. One great technique is in the “Mental Rehearsal” heading.
Another is a dry version of the Epsom baths described here. Keep in mind that you can use a washcloth or soft cloth dunked in Epsom solution instead of taking a bath, in order to benefit from the de-programming and re-programming you can do on your body in this way.
This period is crucial because that’s when 80-90% of the healing is completed. So, this is why the vitamin protocols, physiotherapy, and medical care really focus on that period. Problems are best found early in this period, so they can be fixed, mitigated, or worked around.
It’s not short, but it is finite!
PHYSIOTHERAPY AND REHABILITATION
Do what you can to get the best rehab possible, and be as communicative and involved as you can. Remember, whether you like your rehab professionals personally is not the point; it’s simply a question of whether you can communicate with them and get the care that you need. If you can’t communicate with them despite your best efforts, change therapists. There has to be 2-way feedback — especially with the tricky cases that we always are — or else it’s not a therapeutic situation.
Retrain the Pain
There are several ways to manage how the CRPS brain mis-handles the new pain information. These are different ways of hacking into the ways that the disease grabs the part of your brain that corresponds to the part of your body that CRPS wants to climb into.
Naturally, there are no guarantees, but mental-plasticity techniques can be hugely helpful.
When you are using that limb in the rehab stage, mentally practice the motion first, playing it out painlessly in your mind. Imagine the whole motion going perfectly comfortably. Then do the motion. If this doesn’t go well, work with your physical therapist on details of the technique (there are several ways to conduct the imaginary and real movements) and figure out what works best for you. Persistence is key in rehab.
The point is to make the movement you mentally practice as realistic as possible, as much like the real motion as possible, and have it be painless and comfortable in your mind when you practice it. Keep doing the mental rehearsal before the movement, and refine the mental rehearsal until you can predict the shape of your movements fairly exactly. This was one of the best tricks I ever learned for de-programming my body’s pain responses and getting back a TON of function.
If done wrong, it can have pretty much the opposite effect, so go carefully and find good guidance if it’s not easy for you.
This is kind of like acting out a metaphor, and that metaphor communicates with the body-mapping parts of the brain in a way it’s hard for them to ignore.
I find it makes a big difference if I approach all this with an attitude of parental authority toward my own body. I can’t control my body completely, just as a parent can’t completely control a child, who really is a separate entity; but a parent can exert a great deal of influence, when they do so with tones of loving, generous, insistent declaration.
“This is best for you, and I know that, and what happens to you matters, so do this and we’ll go from there.”
For paraesthesias — the garbage-can term meaning “weird skin sensations”, including numbness, tingling, or allodynia — I simply stroke from a non-weird area into the weird area.
I pay attention while I’m doing that, mentally pushing the non-weirdness into the weird area, and telling the weird area to pay attention because this is what “normal” feels like and “normal” is the appropriate way to feel. Kindly persistence is key.
Every now and then, I hear Jim Carrey’s character talking to his dog Milo. This clip isn’t in English, but somehow the meaning comes through in the first minute: “Come here, Milo… Come on, there’s a good boy… You can do it… PUT SOME EFFORT INTO IT!”
PAIN REHABILITATION can take longer than 12 weeks! Keep at it
Be patient. Be diligent. Above all, don’t give up. It just takes time (months or years in some cases) but it can usually be done, and the time will pass either way so you might as well have something to show for it.
Keep working on it. Mental rehearsal, brushing, self-hypnosis, calming meditation, Epsom baths, vitamins, etc. It all helps. Keep at it.
If you don’t already have a good pain psychologist, this is the time to get that referral. Pain psychologists have special training around understanding how pain impacts the brain, and how this, in turn, affects our feelings and behavior, and what we can do about that. Most importantly, they have special training about how to use the characteristics of the brain to better our frames of mind under varying stresses. It’s pretty brilliant.
There is a ton of good science on how we can learn to use our minds to improve our lives, and pain psychologists are the ones trained in how to identify our strengths and struggles and train us as individuals in using the tools that can benefit us the best.
NUTS-AND-BOLTS PREPARATION FOR PROCEDURES AND SURGERIES
Basic activities of life have to go on… So, plan ahead, clear the decks for action, and prepare some things ahead of time so that you have less to flail about when the time comes.
You need to be able to get a meal with minimum effort for a couple of weeks. Before surgery, stock up on easy food. For me at my surgeries, that was apples and nut butter, nitrate-free cold cuts and veggie chips, romaine lettuce and Cabot Extra Sharp cheddar — which I slice and bag up ahead of time. Trader Joe’s and good grocery stores often have pre-made wraps, soups & salads, and good frozen meals. For normal people with fewer allergies, it’s probably instant soups and microwaveable food. Whatever works for you. As long as you’re taking your vitamins, packaged food may be a reasonable compromise within your limits.
Say it with me: “Do what works for you.”
Clean clothes and sheets
Also, catch up on laundry and get rid of any “stupid problems” around the house — a door that makes you fight with it, a sink stopper that doesn’t work, a rug that always catches your foot. Fix the door, pull out the broken stopper and replace it with one from the dollar store, and get rid of the rug. I hate those kinds of rugs. (Old trauma nurse, remember.)
Making a “day nest”
If you don’t already have one, set up a “day nest” at home. It’s absolutely essential to get out of bed every day if possible, because it’s much better for your brain, but for awhile you won’t be up to much more. Make a comfortable place to lounge and watch tv, with your body-part up, some kind of toileting you can get to, and your comfort kit handy (books, comics, hot water bottle, meds, snacks, etc.) for hours at a time.
Personal hygeine (sigh)
You’ll need to waterproof that body part for bathing and showering. You may need back scrubbers and other reaching aids to get clean, too. At certain times, a wet washcloth may be the best you can do, so make it easy to reach the washcloth, soap, and a manageable towel.
Try to work this out ahead of time. Give yourself slack for different levels of ability: washcloth while sitting on the toilet, soaking in the bath with the body part perched on the rim, showering in a chair or stool, or standing under the running water. Remember to figure out how to clean and manage your hair.
Having this mapped out ahead of time simplifies the hygeine. For another, it’s powerfully healing to know that you’re taking good care of yourself.
The first few days are… special
I find that the first 2-3 days are too bewildering and painful to handle alone. After that, I’d begun to learn how to change position, dress, and wipe myself adequately (hey, that’s important!) and the IV site had healed.
If you’re on your own normally, try to find a helpful friend to stay with (or ask them to stay with you) for the first 2-3 days. All you need is someone to remind you that there’s life outside this, to pass your meds and a tissue, and, if necessary, call an ambulance to get you to the ER. Simple enough.
If you’re facing surgery or invasive procedures or a major injury, you’ve got a tough gig ahead of you, but you can manage it. I’d be wetting myself with anxiety if I had to face that again, but I’d do all this stuff anyway because I know it works.
Now, having said that, this is the part where I have to insert the reminder that I am not a doctor, I have not examined my readers, and I have no business making diagnoses or conducting treatments on them.
Since I’m a pretty straightforward old cuss, I’ll add that it’s your own body anyway and you have to do your own homework, follow your own inner promptings, and take responsibility for the choices you make accordingly.
May all things go well for you, especially recovery.