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.

Remapping

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.

Nonverbal cues

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.

Body language

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

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

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.

Re-remapping strategies often involve deliberate movement, combined with some other primitive signal (like seeing or feeling.) This is behind mirror therapy, my Epsom bath routine, mental practice/motor imagery (one article on the science, one explanation of how it works, one article providing charming context outside pain treatment), and other great tools for re-remapping the brain. Even coloring involves movement, and part of what calms the brain down is watching the hand move between the page and the coloring tools (lateral visual movement, not unlike EMDR.) Simple as that.

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.

Tough situation.

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:

1. You understand the concern about screwing up your body’s reward-signaling,
2. You’d like them to know you’ve been using your alternate methods for days/weeks/whatever, and
3. 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.

Developing our toolkits

To find some of the tools in my toolbox and ideas about how to customize them, check my other blog posts on self-care techniques, sleeping despite all this, and retraining the brain. Also, investigate these intelligent and thoughtful blogs from my international cohort:

• Elle and the AutoGnome, UK, funny brilliance by a professional researcher;
• Princess in the Tower, Australia, warm and inexpressibly kind, with not a shred of b.s.;
• 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.)

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!