Loss of Full Life: Pain (A work in progress) – Peripheral Neuropathy Support Network

Summary:

PN is uncomfortable. Virtually every PN patient has discomfort or pain. This reflects the standard pattern: discomfort, possibly substantial, while PN silently destroys our ability to stand.

A substantial minority of patients report major problems with pain. To many of them pain is the primary problem, not the degradation that destroys balance. Many have either not been told of balance danger or have not heard it emphasized. For a few, life seems unbearable without relief from pain. “Doing something about pain” becomes the focus. That focus can have severe personal downsides if the balance aspects are not concurrently addressed. Using “least pain possible” as the only goal can get in the way of “getting on with life”. Pain relief can reasonably be primary but should not be the only goal.

The primacy of pain in PN reflects a basic and natural misunderstanding.

Pain is vital to our health. We would not survive childhood without it, as shown in some rare cases. The kind of pain associated with a temporary issue (such as a cut) is fundamentally different from the kind of pain that is associated with PN. PN pain is “chronic”. It is “persistent”, not temporary. Severe PN pain, like other chronic pain, CAN be treated effectively. Often it is not. Worse, those with the most pain may be least likely to accept the logical basis for effective treatment methods.

The most easily understood, and often the most persistent PN patients, are those with significant pain. Their voices dominate most public discussion of PN. Other aspects of our society, such as our health system, tend to encourage that dominance. Such dominance bodes ill for such patients. In the broader effort to reach the goal of “finding a cure for PN”, failure to explicitly attack that misunderstanding has severe social downsides. (though such aspects are only lightly touched in this essay; see Section 10).

This appears to be a case of “Be careful what you ask for”.

1. “My pain needs respect”

Peripheral Neuropathy is uncomfortable. A little or a lot, it’s usually painful.

In the material below, I will be talking about dealing with that pain. However, you may, especially if you live with much pain, react as follows:

I’m in pain.
This author does not understand.
I’m strongly tempted to stop reading right now.
This author does not respect me. Or my pain.
This author is trying to tell me that “It’s all in my head” or “It’s my imagination”

No, I’m not saying that. Pain is quite real. The body and brain work together to create this phenomenon. Normally, pain is vital to survival. While my pain is not like yours in some respects, it is “like yours” in highly relevant respects. To justify that claim, in the next section I will describe my personal experience (so far) with PN pain. Of course, the message below can certainly sound dismissive. Every lecturer on modern concepts of pain is obligated to explicitly reassure the listener that their pain struggles are not being dismissed. There are reasons, as discussed in section 7, why this message is hard to grasp.

If you are a normal human, pain is probably not what you think it is. Or, if this essay has its intended effect, not what you thought it was.

There are two illusions in play here. First, the chief illusion, pain is “in” the body. Second, a secondary illusion, your life will improve if you do “everything possible” to remove it. The bulk of this essay addresses the chief illusion.

2. My Personal “Chief Illusion” with Pain

I was diagnosed in 1997 with a “tingle” in a toe. The usual question: “What’s that?” That is what my brain is supposed to say. And did. Curiosity, certainly. A bit of fear, maybe? Worry? No, not at all. Way more important other things to worry about than a “tingle”. Nevertheless, employed by a company with generous health insurance (unlike major portions of the US population) the “tingle” got checked out.

After diagnosis, primary fear shifted: “Will I lose feeling in my fingers and be unable to work my normal career activity using a computer keyboard”. Oh, many years later, how naive that sounds. As this essay will try to show, “fear” is a major factor in PN pain.

After struggling to pronounce “peripheral” and spell “neuropathy”, discussions with others almost always went like this: “Many people say they have pain with PN. I have some, but not much. I’m pretty lucky.” Rising levels of naivete.

After a few more years, I noticed more pain. Especially in my right big toe. Especially when trying to go to sleep at night. Annoying. I started listening to recorded lectures at night to help distract me. Trying to hold my right foot under something to, I don’t know, comfort it or something. Having prior experience with Trazadone, I knew it had a transient sedative effect, so I kept using it (the standard minimal dose) merely to help me get to sleep. Often, it was a challenge to return to sleep after waking in the night.

But life with PN seemed OK.

Numbness slowly expanded up my feet and then my legs. The numbness and pain intensified, but the functional impact of such “feelings” were minimal. The “feelings” rarely intruded when I stayed busy. And I did stay busy. Enforced idleness without available distraction became something to be endured. A couple of attempts at “mindfulness” collapsed, crushed between active “mind wandering” and the feelings in my toes. I never made the required time investment that experts recommend. Makes me wonder what else in life has been lost by impatience.

Sleep became a larger problem as the pain gradually worsened. I often worked late into the night. In 2006 I got the Wii game system, liked it and used it regularly until I upgraded to the Nintendo WII Fit game with its “Balance Board.” I became a devotee and got up at five o’clock every morning to work out. Loved it and felt cheated when I could not “indulge” in morning exercise. My sleep pattern became more regular.

Then PN got to the point where I could no longer balance on the Wii Balance Board. Water aerobics and gym helped but were less compelling. My exercise routine degenerated, late-night work returned, and, again, sleep suffered. Several attempts to adopt a more “normal” day/night distribution of activity failed.

Soon after retiring, I joined a PN support group. Listening in the group, it became apparent that I have never had their experience of pain. (Note: In a section below, I will address the critical importance of “variation of individual experience” not only for “perception” of pain but, crucially, for ability to “understand” pain.)

As I’ve read more about chronic pain in the last two years, I’ve begun to see the pattern with my pain:

I get ready for bed. No thoughts of pain. No pain in right big toe.
Lie down, settle. No pain. Can’t help it, but the question comes: “Will the right big toe start hurting?” I can feel it looming. I fight it. Sometimes for a few seconds. A minute at most. Then it starts. I squirm. I start playing a recorded lecture. I shift from side to side trying to tuck the toe away. I fight with a pillow that seems to warm too quickly. If I am tired enough, sleep comes. If not, frustration comes. If I wake during the night, the pattern often repeats. Sometimes sleep never returns.
I tell myself “This tingle or irritation is not dangerous.” “Brain, calm down.” “I don’t want to listen to this, go away”. These words are my answer to the following question: “What can I do that is consistent with what ‘the pain experts’ are telling me?” Does it work? Not always. But usually. And the “usually” is increasing in frequency. Nights when it does not are frustrating, but the trend is positive. Knowing that the trend is positive helps too. I’m slowly winning my “big toe fight”, even as other symptoms of PN get worse.

The next day, rested or not, I return to winning most daytime battles with PN pain. There’s increasing confidence that I will win many of the nighttime ones too.

In recent months, I have started “Round 2” with my pain journey. For about a year I have had more and more shoulder pain. In the fall of 2020 I approached a surgeon about it and he informed me that I had no cartilage in that shoulder and a “total shoulder replacement” was in order. What bothered me about that was fear that during the rehabilitation process, with only one arm to balance with I would either fall or be idle so much that my PN-damaged leg muscles would weaken seriously. Fortunately, there was a complication that delayed the operation date. During the interim, I practiced doing daily chores with my arm restricted. During that process I slowly found that my pain was retreating. Eventually, I decided that I did not need the replacement surgery. My shoulder pain is slowly ebbing and has little impact on my life now. How is that possible? Read on.

3. Chief Illusion: pain is in the body

“My body hurts.”

Not so. All “pain” is in the brain. 100% of it. We have sensors in our body that send signals to the brain. But we have no “pain sensors.” None. They do not exist. Sensors cannot create the complex mental state that we call “pain”. (Note: the origin of the phrase “pain sensor” will be addressed below.)

We have sensors that sense “different” and will send a signal when they sense “different enough”. They sense chemicals, temperature, pressure, and strain. If what they sense is “strong enough” a signal will be sent. Technically, as a group, these sensors can be called nociceptors (though many sources use that word only for chemical sensors). Our nociceptors are like smoke alarms. Smoke alarms sense stuff in the air. They do NOT sense “danger”. They just sense stuff in the air. Like a smoke alarm, nociceptor signals are designed to warn the brain of something that might be dangerous. It is up to our brain to assess the situation. Our brain “knows things”. That knowledge creates context. Using that context, it can decide that (a) the situation is, indeed, dangerous and some action needs to be taken or (b) the situation is not dangerous or (c) something in between. Similarly, a smoke alarm sound could be triggered by a dangerous fire – or by innocuous steam from the soup. It takes a brain to make that distinction.

Note: Some refer to nociceptors as “danger sensors”. That is helpful and closer to the truth than “pain sensor”, but still an overreach. “Danger”, like pain, is an assessment by the brain.

If the brain decides something is “dangerous” AND “action” is needed, the brain will create a feeling of “pain” to prod us to take that action. That is what pain is. Our body uses our brain to combine signals, memory, and logic to assess danger. Then our brain creates the “feeling” we call pain. Pain then prompts us to protect ourselves from that perceived danger.

The “and action is needed” phrase is especially important when thinking about PN.

If you sprain your ankle while running into the grocery store, you will feel great pain. Your brain is smart enough to realize that it is more important to avoid more damage to the ankle than to keep shopping. The “action needed” is to stop running.

If you sprain your ankle while running away from a hungry lion you will feel no pain (from your ankle). Your brain is smart enough to realize that further damage to the ankle is less important than avoiding death. Your brain does not want you to stop running.

When we feel pain due to nerves damaged by PN there is no “action” we can take to “fix” the damaged nerves.

At this point, despite any disclaimers made above, the reader who suffers greatly from pain is probably ready to put this document down in disgust. “This guy has no idea what I’m going through!”

While somewhat true, please continue reading.

How do I know of this reaction? I will address my personal experience with this response in a section below.

4. Life as a Deceptive Teacher

Early on, perhaps before birth, our brain was “trained” to regard those sensory signals, especially chemical ones, as strong signs of danger. For many of us, we lived 50 years or more protected by that training. Suddenly, with PN, our brain has got it wrong. Usually it has it wrong on two counts. First, the situation is not dangerous (at least, not immediately) but the brain is using pain (ranging from tingles to terror) to murmur (or speak or whine or scream) “DANGER”. Second, after living with PN for a while and being told by the doctor that there is no cure, our brain is still insisting that we “fix it.” Hey! We’ve already established the fact that there is no way to fix the damaged tissue.

Stupid brain? No, it just needs some retraining.

When we don’t, won’t or can’t take some action to resolve a situation that seems “dangerous”, there are consequences.

We can be fearful. We can feel trapped and helpless. Even hopeless.

With some time and knowledge, we can relax a bit but still “feel worried”. Worry stresses us. Worry is a form of pain. Worry is a major part of PN pain given that there seems to be no “action” available to “resolve the situation.”

Unlike a cut finger, there are no direct physical actions available to fix pain. All available actions are on the internal side, the learning side. The brain’s side. Actions include training the brain (to be less alarmed), distracting the brain (involving it with something else), modifying brain processes with chemicals (such as Lyrica or alcohol), or treating brain illness (such as depression).

Combinations can work. Any satisfactory long-term solution will involve brain training (AKA “learning”, “adapting”) to some degree. For some, this is easy and inexpensive, perhaps after a transition. For others, it takes a lot of work and time. It may need guidance and perhaps teams of helpers. A growing body of strong evidence (such as the videos listed at the end of this essay) suggests that combinations that emphasize training (and use drugs cautiously) eventually work better.

Again, the reader in great pain is tempted to snort. “Don’t you think I’ve tried all that stuff?” “How dare you, an admitted ‘mild pain’ person, talk to me about this?”

I know. But please continue reading anyway.

5. So, What’s Happening?

Still, PN is doing something to our body. Something is triggering our sensory neurons to send signals to our brain to “get alarmed” and generate pain. What might that be? A simple explanation involves the fact that any sensor is surrounded by other sensors. In particular, the “chemical sensors” that sense the substances thrown off by any cell, such as a neuron, when it is damaged. Signals from those chemical sensors are especially relevant. It makes great sense for our brain to interpret them as dangerous. Our brain “knows” that temperature, pressure, and strain sensors have legitimate functions other than being used to signal possible danger. But the brain also knows that most chemical sensors are “on-the-alert” for damage, not some innocent function.

There is another factor at work. A sensory neuron is a rather different actor than most neurons. Most of our neurons are used to pass a signal from one neuron to another neuron. Sensory neurons, such as those in our skin, are tied to structures (“receptors”) that “originate” the signals, not simply pass them along from elsewhere. In those neurons, the signal generation process can be damaged in such a way as to generate more signals.

Nevertheless, the signals are “useless”. They serve no function since there is no “treatment” that can stop the damage. They are like a battery powered smoke alarm that is still making noise after the house has burned down. Our job is to learn to ignore the signals.

6. Why “My” Pain is Different

More deeply, why do some have more pain than others?

Is there convincing evidence that some of us are in more imminent physical danger than others? [Answer: No]
Are “my” sensors fundamentally different from “yours”? [Answer: possibly, but probably not] Outside the cases of some rarer forms of PN, there seems to be no convincing evidence of much physical variation. And there’s no obvious evolutionary reason for sensor physiology to be significantly variable.
Is “my” damage from PN more wide-spread or of a different character? [Answer: possibly] People differ in many ways. It is reasonable to suppose that past illness, genetics, “cause” of their PN, lifestyle, stress adaptation and other physical variations could modify PN’s speed of onset or damage. But, given our current knowledge of PN and inability to “see” PN damage, the evidence of variation in pain signaling is not readily at hand. Of course, it is possible to gather evidence about functional variations via various tests such as nerve conduction and balance evaluations. But, other than “numbness”, I am unaware of correlation between those functional measures and reported levels of pain. I certainly see little correlation in talking with people at our support group meetings.
Might it be that differences in pain reflect the specific context of memories, experience, skills, and history each person is bringing to his own life? [Answer: almost certainly yes.] We are certainly aware of vast differences in all these factors.

If the differences in perceived pain reflect, to a significant degree, differences in both physical and emotional experiences, approaches needed to help will be just as varied. One should not expect any single health specialty to have a one-size-fits-all answer. It is best to have access to all tools of medical care (not just, for instance, chemicals or acupuncture or …). In the last 20-25 years a board-certified medical specialty on pain has emerged. Even better, we need access to powerful primary medical care that can “orchestrate” our care across the board.

7. Deceptive Language

So, we need to stop using the phrase “pain sensor”. A nociceptor, a so-called “pain sensor”, only measures some physical status. Each sensor is isolated and does not have access to the kinds of memory, context information or logic capabilities that the brain uses to create the complex mental phenomena that we call “Pain”. Even a collection of sensors, such as the entire set of chemical sensors in your right big toe, is limited in this same way.

Note: The body is complicated. There are some “mini-brains” in the spine, heart, and gut. They can integrate multiple signals into a combined signal (for instance “stomach ache”). They can, in the case of the heart and gut, prompt some “automatic” local “actions” by that body part. None of these mini-brains are capable of “creating pain” – that requires our brain. At least, I can find no one claiming that the mini-brains “feel pain” in the same sense as our central nervous system does. Apparently, the complex digestive and cardiac nervous systems simply pass signals to the brain. But, to my knowledge, our visualization tools (such a functional MRI) have not been deployed to investigate the possibility that the digestive, endocrine or cardiac systems create any “perception” analogous to “pain”.

8. Why we Fall for this Deception

So, where did the inaccurate term “pain sensor” come from and why does it sound like a reasonable term?

Let me try an analogy. If you have a smartphone it may have a “map” to help you efficiently move from your current location to another location. In the “good old days” we used big pieces of folded paper for the same thing (if less efficiently). Analogously, the brain has a “map” that logically connects parts of the brain to “corresponding” parts of the body. When we stub our toe, cut our finger, bang our knee, or “get a stomach ache”, that “mapping” allows us to efficiently (that is, immediately) find and treat the part of our body that has the problem. As a tiny child we learn to use that map. We use it so much that we call it “natural”, ignoring the incredible complexity of what our brain is doing to make that happen.

It is so “natural” and familiar that we use short-hand language like “my toe hurts”. Because we are social creatures who all grew up learning to use these “brain to body” maps, that short-hand way of describing things works as an efficient way to communicate with others. For instance, “My stomach hurts” might prompt mom to go to the medicine cabinet for a Tums. Or a doctor to touch your tummy.

When dealing with the usual stuff, talking and thinking like that sustains us well. It has worked for each of us our entire life. And still does for things like a cut on your finger.

With PN (and vast numbers of other problems that cause chronic pain), that “natural” way of thinking about pain fails us.

Fails spectacularly.

With PN we need to pause. Pause to ask: Do these signals coming from my body indicate something immediately dangerous? Is something about to attack my legs in the next minute, hour or day? If not (and with PN it’s almost always “not”) there’s no urgent action needed to “save” our feet and legs. There is no imminent threat. There is no attacking lion or flesh-eating bacteria. No crying baby. No boss about to fire us. How can we convince our brain to stop sending us those unnecessary alarms, that pain? How can we get our brain to “learn” non-danger from danger?

Learning to handle pain consistent with the material in this essay is an emerging arena of medical treatment. Its successful practitioners take an “integrative medicine” approach. But such approaches are not well accepted by current US medical insurance systems. For now, those systems do not have the extensive case experience needed to find successful practitioners and accurately estimate their cost risk. Nor (unlike most TV doctor shows) are most systems set up to encourage the efficient use of multi-disciplinary “teams” strongly controlled by primary or internal care specialists. Given their limited experience with integrated pain treatment and teaming, these insurance systems are further hobbled by needing to use older “procedure codes” and “fee for service” payment practices.

I earlier described my personal approach to deal, so far, with my mild (if revealing) PN pain. I also described my personal transformation from “fear” of a shoulder (severe pain) to simple acceptance that it just does not work as well as it use to (nuisance pain). The set of videos referenced at the end of this essay contain many suggestions and some case studies (though most are on chronic back pain, not PN neurological pain).

For you, the reader, all I can offer are the words of this essay with the hope that, so armed, you will “accept” these words as relevant and use them to guide your interactions with sources of care. I’m not a doctor. I don’t even play one on TV. But discussions with doctors young and old suggest that the younger ones are firmly in my camp

9. “Accepting” harder for some. Why?

The Scene:

One: A person with severe pain. Sitting upright, arms folded. Clearly unconvinced.
Some: Polite, tolerant because they know the speaker “wants” to help. But wounded by many prior experiences with disappointing results.
Some: “Doing OK”, living with frequent, occasionally disabling episodes of intense discomfort. But curious, always alert for new info, but not wanting to “get their hopes up”.
Some: Have heard elements of this story, tried some techniques as time and funds allowed. But focused on “getting on with life,” not wanting to put “too much more” into dealing with “pain”.
Many others with various situations, all experiencing some bothersome sensory issues, perhaps just numbness.
Plus, a person like me, trying to “sell” some ideas.

This is not easy.

First, an example. My wife worked with me at every stage of writing this essay and the larger document it is a part of. She “understands” the logical flow. She “sees” and accepts the evidence. Nevertheless, she has a difficult time “feeling” the truth of it. She has struggled with back pain, off and on, for 40 years. Intuitively, as described above, it “feels like” that pain is “in her back”. But there is more to the story. A few days ago, we had a revealing “blowup” over this.

She is sensitive to “being pushed” by me, especially when tired. I have learned to be cautious. And I usually am. But not that night. While urging her to join me in some exercise, I launched into a lengthy, pushy defense of that suggestion using the “logic” of this essay.

Her response: “You just don’t understand how bad the pain is.”

Ouch. True. True on at least three counts. At that moment,

I did not have back pain (at least, not much)
I did not have the pain of memories of past “pushing” suddenly rubbed raw
I did not have a history of seemingly minor movements suddenly hurting, accompanied by decades of doctors and the world telling her to “be careful” and “protect your back”.

Whatever the “truth” was, I (and “the logic”) had no chance of being understood. Not then.

It’s Ok. My wife and I had recovered our cool by noon the next day.

Note: While treatment of back pain and PN both emphasize exercise, the details are quite different. Experience tells my wife that movement can bring on back pain. It intuitively “makes sense” to her that such hurting will cause additional physical damage and lead to worse hurting. Hence any new or unfamiliar exercise carries a smell of “danger”, despite her years of conscientious exercise and a normally busy life.

Reading the above words, our friend Pat says: “I have some of these same concerns when working with my trainer and find my toes/feet burning so badly I can’t do what she’s asking. There is anticipation of pain the next rime she asks me to do the same exercise – but mostly, I repeat “exercise, exercise, exercise,” grit my teeth and do it.” Like my wife, Pat “knows” the pain is in the body.

Unfortunately for PN, most of the videos emphasize back pain; PN “gets no respect” even in YouTube. But the role of the brain in connecting sensory signals to “danger”, as described in this essay, is identical for both. PN may “get no respect”, but the PN community owes a deep debt to back pain research for revealing how the brain works.

Presumably, the larger “pain” looms in a person’s life, the harder it is to break the bond of this (normally useful) illusion that “pain is in the body”.

Even worse, modern psychology has come to recognize that addictive behavior (such as over-consumption of food), often has roots in untreated trauma. The hypothesis: people do these self-destructive things to “self-medicate” current stress or memories of past events.

Those stresses or trauma cause “pain”; the brain is dealing with “danger”. The “medicine” of food (or even alcohol or drugs) can temporarily “treat” that pain. But such “medicine” is ineffective (or worse) because the underlying problem has not been addressed.

The PN sub-hypothesis: PN-related sensory signals simply add more “danger”. A traumatized person struggling to cope, now has more to cope with. This sub-hypothesis seems testable. If correct, we should find that PN patients with recognized signs of mental distress (depression, money problems, marital conflict, etc.) tend to report more problems with PN pain.

After the PN damage-machine sets up shop, it is hardly surprising that something like “it’s all in your head” would simply add insult to injury. Insults rarely encourage calm reflection.

It may not be too much of a stretch to suggest that PN caused by type-2 diabetes or pre-diabetes may often have a direct link (via addictive behavior) ??? to stress and trauma “pain”. It seems possible that the “obesity epidemic” in poorer populations (with associated rise in PN) may reflect this “self-medication” use of poor quality food. (Mike, not understanding this – addictive use of food to mitigate stress/trauma directly links to obesity but PN?

By the same logic, those with much less pain should find this essay easier to swallow.

10. Implications of Chief Illusion: Pain Is in the Body

With PN, that “natural, familiar, obvious” language (ex. “I have pain in my toes”) points us individually and as a society directly away from the best solutions for pain. There is the obvious danger of falling into the arms of the snake oil vendors. More subtly, it leads us into the “compare treatments” game. We never ask: “What makes you so fearful?” or “Is this really dangerous?” We are too slow to put these signals in their proper place.

With PN, after the testing is done, the question “Is this really dangerous?” always has an answer: “No.” As Pat reluctantly, not quite convinced, puts it: “So, we need to be focusing on what we can do to derail the inevitable train wreck – disability, falling, death?” And further, “We should focus on re-training the brain to ‘see’ pain as part of the illness, not to be cured but to be managed (non-chemically) with alternate life styles – in essence, distracting it — and allowing one to move on with life?”

Yes, that is what I am saying.

Far more ominously, this misuse of our language, by directing most of society’s PN research, attention, and personal spending towards chemicals and distractions, has left us nearly defenseless before the oncoming train – disability and premature death.

11. Secondary Illusion: There is something “out there” to fix this

You have heard the stories: “Captain Kidd may have…”, “… believe there’s buried treasure in Elkhart, Texas.”, “…treasure hunt started by Byron Preiss in 1982…”, “…. treasure boxes buried at secret locations in…” And so on.

And you have seen the images of reasonably sane-looking people spending inordinate amounts of time searching for those treasures.

With PN, the illusion concerns “doing something”.

Once we get our brain to minimize alarms about PN things we cannot fix, the “illusion” is that there is something “reasonable” we can do to stop the damage or completely shut off the signals or the pain. There is no known way to stop the nerves from dying. Once dead, there is no known way to bring them back or replace them. So, numbness will continue. As PN continues, more nerve tissue will die, signals will be generated, and the brain will (and should) remain alert to them. It is even conceivable that the brain can provide pain without the signals (you may have heard of amputees with pain from a leg that is no longer present).

12. Implications of Secondary Illusion

Of course, we should remain alert to future research, but how much of our life should we reasonably devote to hunting for those last measures of PN-pain relief?

Perhaps those in the greatest “PN pain” should consider seeking peace in the hands of skilled life counselors. Counselors who can iteratively knit together a program of tools and techniques aimed at “sufficient peace”.

Perhaps, for you, the best place to look might be hiking in the woods looking for buried treasure.

Finally

None of this is “normal”. Chronic pain is a massive problem. Our society wastes huge amounts of resources and human happiness on ineffective treatment. Effective treatment is possible. For most, such treatment simply needs a clear understanding of the problem.

As Pat points out: “Our group discussions have clearly shown that people are seeking effective treatment in any way possible, including – beyond medication – accupuncture, reflexology, supplements, equipment, counseling.” All of these treatments have the potential to “bridge the gap”. They can help people move from confusion and alarm to acceptance. The patient needs time to continue functioning during the transition.

Once you buy into the notion of misunderstanding pain and deceptive language, there is a need to understand how to “retrain your brain system to be less protective” (see the Moseley lecturers, referenced below). The simple end result is learning to ignore the pain. The brain is lying to you. The brain is screaming “Danger”, but there is no danger. This learning process is gradual and takes time. All the “treatments” are there as tools to help you live and function until the lesson is learned. Preferably, using treatments that do not cause too much damage (physical or financial) during the transition.

For tougher cases, it needs sympathetic leadership by those with successful experience. Where can such leadership and experience be found? Eventually, the American medical system will come around. For those with funds, such help is already available within private clinics that focus on counseling. For those with conventional health insurance, help will come only by firmly resisting “conventional” shallow “take this pill” responses. For those with neither, we need advocacy.

Supporting Videos

“Tame the Beast” https://youtu.be/ikUzvSph7Z4 Good 5 minute graphic video by Lorimer Moseley

Prof Moseley is currently Professor of Clinical Neurosciences and Foundation Chair at the University of South Australia. He has authored 300 papers and five books on pain and rehabilitation. Professor Moseley is particularly interested on how education about pain can lead to better pain-related outcomes.

“How does your brain respond to pain?” https://www.youtube.com/watch?v=I7wfDenj6CQ Another 5-minute graphic video. Over 2 million views. by Karen Davis, a pain researcher at the University of Toronto (and Google Scholar)

“The Pain Revolution” https://www.youtube.com/watch?v=nifGFIuVkUk – Lorimer Moseley (20 min) This extract from a much longer lecture hits all the major points about modern approaches to chronic pain.

There have been some amazing pain discoveries over the last 20 years. They’ve opened new opportunities for people in pain. This talk explains that when pain persists, your body learns to expect pain and becomes over protected. You can use proven strategies to slowly retrain your pain system to be less protective. To begin, you need to rethink what pain is (as opposed to what it “seems” to be), what factors contribute to your pain and how you (or your helpers) can tailor a suitable brain retraining program.

“Pain, the Brain and your Amazing Protectometer” https://www.youtube.com/watch?v=lCF1_Fs00nM – Lorimer Moseley (1.5 HOURS! – but really good.) A great storyteller. Wildly funny in places. Longer and more detailed than the previous video, it has an excellent Q&A at the end. For additional fun, you might want to watch his original 2011 video that has been viewed almost a million times (https://www.youtube.com/watch?v=gwd-wLdIHjs )

“In search of a unified theory for pain relief” https://www.youtube.com/watch?v=DkjkA2JTg3Y – Howard Schubiner, M.D. (31 minutes) Stop telling people to “just adapt.” People will reject that. It’s bad advice. Encourage people to attack pain the best ways (plural) and understand that it is reasonable to have hope of some success.

My 2017 blog entry “Chronic Pain: The Mind on Fire” on the dcpnsupport.org site summarized the concepts behind integrative medicine’s approach to pain (as then described by Dr Kaplan). Since then his practice has turned even more completely in that direction, changing its name to “The Kaplan Center for Integrative Medicine”. His website (kaplanclinic.com) has a wide variety of resources, including a downloadable document with guidance on selecting specialists to treat pain. Its “professional-resources” page lists the websites of organizations that list and certify specialists in integrative medicine.