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Pain is a pity, but really …

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I got a remarkably thoughtless comment from someone on the physician-driven site, crpsnews.org:

“Everyday is certainly a struggle for people with CRPS because they live in pain 24/7. While there is no cure for the disease, it can be slowed and likely to go into remission if treated early, ideally within three months of the first symptoms.”

This remark was so fatuous and misguided that I found it alienating, but it raised several important issues that do come up — especially in regard to people who mean well but don’t know much about it (regardless of their educational level.)

Here are the main points of that remark:

1. Pain is why people with CRPS are to be pitied.
2. It’s incurable, so don’t go there.
3. It can be slowed or pushed into remission…
4. If you catch it really early.

Those of you who’ve followed me, know what’s going through my head right now… “Where do I even start?”

Not with # 1. We’ll have to come back to # 1. Let’s go in reverse order.

4. “Diagnose it early, ideally within 3 months of first symptoms.” Physicians control diagnosis; patients can only control how they respond to it. Since most cases of CRPS aren’t even diagnosed for YEARS, that’s not a useful remark. Say it at every medical workshop you go to; leave it out of a patient-driven site, because it’s a slap in the face.

3. The remark on remission is slighly confusing.  Remission in CRPS is not like remission in cancer. It’s a fragile state which can revert at any moment over the slightest thing. It’s nothing like a cure. Remission is still possible years on, as the anecdotal evidence indicates.

2. A cure, as they pointed out, doesn’t exist — yet. And, with the wrong clinical focus and a hopeless clinical attitude towards a cure, it’s no bloody wonder.

It can be cheaply prevented in ~80% of cases by 500 mg vitamin C, 3 times daily, for 2 weeks before and 3 months after surgery (or 3 months post-injury.) That’s much more realistic than CRPS getting diagnosed within months, but so few people know about it that it doesn’t happen much.

Result: lots of needless CRPS.

Spread the word about 500 mg vitamin C. It could save lives.

Most people who don’t have CRPS focus on the pain as the reason for sympathy. Everybody has had pain, and the idea of pain is what they think they can identify with…
The pain of CRPS is like nothing else I ever experienced before. Yet I was an emergency nurse, motorcyclist, weightlifter, runner, horse rider, gymnast, martial artist… and a statistic, having endured more than one attempt on my life. (I’ve had an eventful life.) Plenty of opportunities to hurt; always recovered fast.

Yet, despite the often show-stopping pain I now live with, PAIN IS THE LEAST OF MY PROBLEMS. It’s the weakness, autonomia, and cognitive decline that are the real problems.

That’s where the research needs to be.

That’s where the help is needed.

That, honestly, is where the most empathetic and useful sympathy lies 🙂

Imagine feeling your ability to think, learn and remember simply dissolving, and there is nothing at all that you can do about it. You can hope it will come back to some degree, and eventually it does (if you avoid everything you’re now sensitive or allergic to, eat tons of antioxidants and greens, drink lots of water, and don’t screw up anything about your life at all — while you can’t remember what just happened, let alone all that you have to do…) but you know there are no guarantees, and after awhile, the repeated gapping starts to add up.

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For a brain, that sucks, eh?

Doesn’t that seem a bit more distressing than physical pain? I think so. It certainly has more of an effect on what I can do with my life.

Pain can be pushed through; the weakness, autonomia and cognitive decline are virtually impossible to push through.

Why is that? Because I need my muscles to be able to recover in order to rebuild melting muscles, my autonomic nervous system (ANS) needs to work well enough to let me regain control of my ANS, and I need my brain to work out how to help my brain.

It’s like opening a box with the crowbar inside.

Relentless attention to activity, food and supplements, and state of mind are mandatory for a bearable life — not because of the pain, but because of the weakness, autonomia and gradual brain-death. In order to barely stand my ground, I have to dance as fast as I can.

That’s very hard for most people to wrap their heads around. It seems too hard. But to those of us with chronic CRPS, it’s just another day. We have to manage all that and still somehow keep food in the house, laundry done, bills paid… relationships intact.

This focus on pain, to the exclusion of the more thoroughly disabling issues, has led to a serious misapplication of resources. A lot of lives have been damaged or destroyed because of that willful blindness in the medical and treatment domains. So it frustrates me, especially as a passing remark dispensed from a physician-driven site. (I wonder where their funding comes from… )

Sympathy is a lovely instinct, it really is, and I sure don’t want to discourage it. Though I don’t see sympathy in the remark I quoted above, I have heard people without CRPS express genuine sympathy in nearly identical terms. And they really do mean well. That matters!

There’s a lot to be said for being sympathetic to someone’s actual problems, which may not be exactly what you might expect. This would lead to more understanding, better connections to those who have it, more effective help, and in the end, to more effective care.

…

This morning, I woke up from a dream where I was running an international conference on CRPS, where 3/4 of the presentations were given by non-physicians: expert patients, massage therapists, PTs, acupuncturists — you know, the people who really know about CRPS, and the stuff that really works for the real problems it causes.

In this dream, doctors could get a lot of CEUs, but they had to spend 60% of their time in non-physician workshops to get them. (How did I come up with 60%?) There was, how shall I put it, a certain amount of fussing about that…

It was a weird dream. Who knows, though, it could happen… It might do people like that staffer at crpsnews.org a world of good.

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Repeated stress knocks out the prefrontal cortex

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… In a number of ways.
This article describes a new finding which relates memory loss and cognitive dysfunction to a loss of glutamate receptors in the prefrontal cortex (PFC):
body=http%3A%2F%2Fwww.sciencedaily.com%2Freleases%2F2012%2F03%2F120307132202.htm&subject=How+repeated+stress+impairs+memory
They state that this is why the PFC tends to falter in the face of repeated stress: the receptors for one of the key neurotransmitters become depopulated, leaving fewer sites to accept the glutamate and allow that part of the brain to do its job.
Cognitive impairment in the face of repeated or chronic stress is not a monolithic problem, though. Memory and decision-making are probably the most complex of brain tasks, and there are plenty of things that go wrong when memory and cognition fail.
Other factors include dopamine depletion, leaving less of that transmitter to carry messages back from the PFC, thereby making executive decisions harder to make and still harder to follow through on. (I wrote a previous post on dopamine and decision making. I’ll dig it up and link over.)
And then there’s the adrenaline overproduction and overuse that characterizes chronic and repeated stress, leading to disruption of the hypothalamic-pituitary-adrenal axis (the body’s entire signaling structure for body processes) which contributes to brain dysfunction in still more ways: by disrupting sleep, which disrupts memory formation and impedes logic; and by contributing to the rise of metabolic syndrome, creating less stable blood sugar — which, in the brain, adds considerable insult to injury: a hungry brain is a low-functioning brain.
Take your vacations. Simplify your life. Move your body around regularly. Meditate early and often. If you cherish your brain, you might as well let it work — and that means getting a half-Nelson on stress before it gets one on you.

Links:
The article on overuse of dopamine (on my Living Anyway blog): http://livinganyway.blogspot.com/2011/03/dopamine-poverty-and-pain-lighter-side.html
Another Biowizardry entry on neurotransmitters: http://biowizardry.blogspot.com/2011/08/scared-of-wrong-things-role-of-mao-in.html

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Assumptions & memory: elders are sharper than we think

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I’m intrigued by how much more capable the elderly are than we’ve been led to believe. Since only the luckiest and most sensible of us will even survive to be old, that makes a certain amount of sense.

CRPS, which typically attacks people in their “most productive” years (implicit assumption alert!), has shown us that many medications useful in CRPS, which have been given to the elderly like candy for decades (calcium channel blockers, antidepressants, benzodiazepines) have a serious effect on memory and cognition — which was documented only because we don’t expect 38-year-olds to suddenly lose their ability to track simple tasks.

But the elderly get no slack. If your whip-sharp grandad suddenly can’t remember your kid’s Little League scores, who’s willing to relate it to the meds he just started for his heart?

And who cares enough about grandpa’s brain to go to bat for him, and insist that the doc find another way to handle things? Hint: what you eat & what you do, do matter. Visits with nutritional consultants and PTs can be prescribed.

Back to this study:
http://www.sciencedaily.com/releases/2011/11/111104102129.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fmind_brain+%28ScienceDaily%3A+Mind+%26+Brain+News%29

These wonderfully sensible scientists framed an exact goal: they “set out to investigate how implicitly held negative stereotypes about aging could influence memory performance in older adults.”

They specified “implicit” stereotypes, in other words, ones we’re not aware that we’re responding to. (The kind that patients and doctors hold about each other all the time.)

When the tests were run with the stereotypes laid in, the older people did worse on the memory tests. When the stereotypes were made irrelevant to the outcome, the elders did as well as the youngsters. On the same type of test.

Which should tell you just how pernicious and evil those assumptions we make about old people are. When grandma’s memory starts playing up, ask her if she has started any medicine recently. Find out what it was for and how else that can be addressed. Ask if it’s the smallest possible dose that’s prescribed.

Give up the idea that pills solve problems freely, and recognize that each one imposes a tax on the body and brain.

If grandpa doesn’t mind losing his mind but won’t give up his risotto and vichyssoise, maybe the pills are fine, but if he simply assumes the doctor is offering the best deal without showing him alternatives, maybe it’s time to talk about alternatives.

Because doctors default to doing what’s easy and predictable — just like the rest of us! That’s not always what’s best for a mentally or physically active person. They seem to deal with a lot of lazy idiots, and if you or your elders are neither, it takes a lot of effort to bust them out of their groove and get them to think things through.

Try taking it seriously, because nobody should be forced to lose their mind before they lose their pulse.

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SSRI can improve cognition after a stroke

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This came out 2/2010, right in the middle of my being horribly overdosed on SSRI and SNRI medications:

http://www.sciencedaily.com/releases/2010/02/100201171523.htm

(This is where I give myself points for not being violently and irrationally opposed to the class of drugs that did me, personally, so much harm. It’s important not to throw the baby out with the bathwater.)

129 patients were divided into roughly 3 groups, one of which got 5-10 mg Lexapro daily, another got placebo, and the third were assigned to “a problem-solving therapy program developed for treating patients with depression.” (No idea what program that is and they weren’t specific about it.)

The Lexapro group had the best neurocognitive scores after 12 weeks, though the author doesn’t say by how much, or how they processed the data. These are both important issues in scientific studies, since some differences are significant and others are just curious, and how you arrived at those figures can have a considerable effect on how seriously your readers should take them.

“…reported changes in neuropsychological performance resulted in an improvement in related activities of daily living” — which makes perfect sense. When all is said and done, healing of any kind is about what more you can DO afterwards! Doctors, patients, and significant others tend to lose sight of that, getting lost in the compelling drama of symptomatology, misery, and pain. It’s not that that isn’t important, but being able to take care of yourself — or making it so your patient can do so — is absolutely primal.

This study used low doses, which I suspect is key to unimpaired cognitive function — not to mention avoiding the usual side effects of this class of drugs, as they did.

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Warning: Starvation and alcoholism don’t mix

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The latest candidate for Dept. of the Blitheringly Obv.: Young people eating too little and drinking too much is worse than doing either alone. No, really??

Lasting damage to memory and thinking, more bad choices, and increased likelihood of developing chronic conditions later in life, are far more likely because the damage from each form of fashionable self-abuse compounds the other.

This idea is certainly high on the head-desk quotient, but the article is mostly clear and sensible:

http://www.sciencedaily.com/releases/2011/10/111017171506.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fmind_brain+%28ScienceDaily%3A+Mind+%26+Brain+News%29

They mention that the risks to women are higher ounce per ounce, but don’t say why; that vagueness is annoying and wrong, and science is far enough along to know better.

The idea that real food might be good for you is kind of a shocking idea, to some. Encourage them to get used to it. Fresh salad, berries, roast chicken, apples, baked potatoes, butternut squash … There are worse things. Like brain damage, cirrhosis, kidney failure, strokes, chronic fatigue, and HIV.

And looking really bad by 30.

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Pain Manifesto

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This came out of cold chronic CRPS type 1, a debilitating condition of intractable chronic pain, nervous system disruption, and multi-system dysregulation — destroying the body’s ability to manage heat/cold, blood sugar, immune defense, circulation, sensation, bone density, movement, vision, digestion, heart function, and ultimately survival.

“Standard” treatments don’t work well for me; moreover, they involve invasive procedures too brutal to tolerate and medications I’m either outright allergic to, or that impair me so profoundly I can no longer function. At all.

So I took myself off my meds, thought things over, and came to the following conclusions.

MY CHRONIC PAIN MANIFESTO

Yes, it hurts.
It’s going to anyway.

So should I hoard my days
And fast from life?
Comfort myself with poisons,
Blister-packed and FDA approved?

Some think it would be best all ’round.
I’d cure them if I could (heh!)
But I’m too tired for
Yet another pointless struggle.

The sunlight pours through trees like prosecco
And reminds me what it means to live:

Voices warm with love, the
Mouth-smack of good food,
The hug of hills and the
Rough snuggles of the sea.

Hoard my days? I’ll spend each one
Like it’s stuffed with jewels
Pouring through my hands like a miser’s dream.

Feast on this:
The cost of life is much the same.
The difference lies in how you spend it.

How is this relevant to medical science? For one thing, it shows just how badly off base it is in vivo. Like any manifesto, it makes an explicit declaration: fundamental attitudes must change.

Policy determines what will be profitable, and profit opportunities determine what science gets funded. There is no profit in fully-functioning people, but there’s plenty in people who are too sick to function but not sick enough to die … for awhile.

Policy could allow my insurance to cover the things that do work (massage, reiki, homeopathy, yoga), especially given the detailed and vivid documentation I’ve provided of just how well they work. Nobody will fund science studies on these in any volume, because it is so much more profitable to drug people into silence.

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Scared of the wrong things: depressive chemistry and danger

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Funny how the whole delicate neurological/neurochemical structure is so interwoven:

“…The researchers suggest that the strange defensive behavior exhibited by the enzyme-deficient mice may actually reflect a limited range of adaptive responses and lack of emotional flexibility — the mice may only have one gear for fear.”

We’ve all known people who make exaggerated choices around danger that make no sense to ourselves. (Having heard my mother and my sometime partner on the subject of my riding motorcycles, I’m pretty sure of that.) However, only at my most desperately depressed have I engaged in unsafe sex, which is the second stupidest risk I can think of (the first having nothing to do with motorcycles.) 
The role of MAO-A and depressive neurotransmitters, combined with the dopamine-deficient sense of hopelessness and diminished executive function, make that make sense: 
“Monoamine oxidase A is the main enzyme in the brain that breaks down serotonin, norepinephrine and dopamine…”
Which makes me think that it’s possible, in humans in vivo, to be deficient in both MAO-A and in dopamine, serotonin, etc. It would explain a lot about certain mental states, even though it seems chemically tautological at first glance to be both Big 3-deficient and MAO-A deficient. As I’ve learned, though, deficiency and dysregulation do have additive effects, they don’t cancel each other out. 
I’d like to see more studies which monitor serum and brain levels of these key chemicals together, preferably in humans. Science tends to take the simplest possible approach, which is rarely the most realistic and not necessarily the most telling. It does get funded and it does make it simpler to design the studies. 

I look forward to having more sophisticated thinkers (and funders) get into this branch of psychoneurology, since all these lively lovely tiny bits of info won’t come together in a meaningful way until we can look at them in concert with a higher degree of exactitude and completeness. I suppose I’ll have to be patient. And careful. 
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Mechanisms of the special neurologic destruction caused by blast injuries

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This is absolutely thrilling:
“Bioengineers identify the cellular mechanisms of traumatic brain injury; New hope for treatment of TBI in veterans wounded by explosions”
http://www.sciencedaily.com/releases/2011/07/110722213427.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fmind_brain+%28ScienceDaily%3A+Mind+%26+Brain+News%29

These scientists discovered the answers to two frustrating questions that have been blocking effective treatment of blast-related head injuries (TBI, or Traumatic Brain Injuries.)

1. What happens to the brain’s axons? Why do the vital communication-arms of the brain’s nerve cells just disappear?

2. Why does TBI from explosions cause the brain’s blood vessels to shut down and turn themselves off, even though the the injury doesn’t seem that bad?

The horrific health cost to our soldiers on active duty has included being blasted by explosives. These cause profound and persistent brain injuries that seem too severe for the amount of shock experienced by the brain.

1. The axons are part of an interlocked structure that’s woven together by cells and intracellular “glues.” This structure is shaken apart by explosive shock. Axons have to release their connections and shrink, retreating into the body of the cell. This destroys the physical functional structure of the brain. The person instantly loses memories and processing power, as well as a pervasive host of brain tasks.

2. The vessels undergo a mechanical stretch caused by the explosive force pushing through the gelatinous mass of the brain, and then, as a result of that stretch, they become super-sensitive to the chemical messenger that tells them to snap shut and then stop acting like vessels at all.
Normally, #2 only happens in the case of severe hemorrhagic (that is, bleeding) stroke. However, we now know that it also happens in blast injuries that otherwise cause less apparent damage.
Clinical note: Blast injuries to the brain are uniquely insidious. They cause diffuse injury that’s invisibly disabling and incredibly hard to manage, let alone recover from significantly. Behavioral issues and so forth are mechanically and chemically imposed on the soldier’s brain; they are not wilful choices on the soldier’s part.

A lot of fundamental retraining has to be done, because emotional, cognitive and social skills have to be significantly rebuilt and rewired. The wiring that the soldier has built on since childhood has been torn up on duty.

Thanks to our present understanding of neuroplasticity, there’s hope and a path to develop, but it takes time. On top of psychological trauma and the damage that causes to the amygdala and sometimes the hippocampus, it’s a hell of a lot for any layperson to grasp, let alone try to handle.

One of the truly thrilling things about these findings is the discovery of a process that keeps the axons from pulling back in the first place. At present, it works in a Petrie dish if given within 10 minutes of injury; hard to see how that could work in combat.

If it could be formulated to be used in a person, it would still have to be administered extremely fast. Maybe send each soldier out with an inhaler of the stuff? Or a nose spray? A 50-cent bottle apiece to save millions in treatment, lost wages, cost of care, incidental costs on the family, for each injured soldier. Seems like a bargain!

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Chronic pain in homeless people not managed well

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Today’s very promising applicant for the Dept. of the Blitheringly Obvious: “Chronic pain in homeless people not managed well”:
> http://www.sciencedaily.com/releases/2011/07/110721112613.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fmind_brain+%28ScienceDaily%3A+Mind+%26+Brain+News%29
My cynical side is just delighted that people got paid to write that down in black and white. Smacken zie forehead.

For a change, I’m going to ignore the disingenuous and smug language putting inappropriate blame on the patient, because there’s so much basic information missing.

As anyone who has been homeless or worked with the homeless knows, indigence involves the following facts of life:

– Assuming you can even get to treatment sites …
– Doctors won’t take you.
– Hospitals don’t want you.
– Clinics can rarely fit you in.
– Pharmacies hate to see you — a gaping well of need — coming through the door.

And that’s just the medical side. In regular life,

– There’s no decent surface to lie down on.
– There’s rarely a good way to get clean.
– The concept of “good food” is irrelevant. You have to eat what you can get, regardless of whether it triggers a flare or messes with your brain, and are expected to be grateful.
– If you’re a woman or a kid alone, you’re going to wake up with some guy on top of you. This is very bad for back and hip pain, among other things.

Facts you should know:

– Being homeless is a perfect recipe for mental ill-health.
– Disabled people are over 10x more likely to be homeless than their equally-educated & -skilled cohorts.
– Chronic pain is part of most disabling conditions.
– Because of the economy, and despite the masses of money floating around in the stratosphere, disability and indigence are hitting historic highs.

Clinical take-aways:

– Take note of the link on the right to contact your political representatives. Let them know how you’d like the situation to change.
– ALWAYS ask indigents about pain: what, where, when, exacerbates, what they do about it, & most importantly, what they’d like to be able to do about it. Answers to the last will surprise you, because most of these people aren’t stupid. (Just weird.)
– Provide freebies, including toothbrushes and emesis basins. What they can’t use, they can barter with.
– When prescribing, be as generous with free samples as your drug reps’ handoffs permit. Your insured patients only need enough to get started; your impoverished patients need to get so used to feeling better that they’ll prioritize accordingly (beg, borrow & steal for their scrip instead of their booze? It happens.)

Keep in mind that a few days’ relief is just a break, but a few weeks’ relief lets them start to function for a change. Some will abuse your kindness, but big deal.

The rest will take the opportunity of having their burden lifted a little, to move forward in a way they couldn’t do before. And thus a good deed goes onward, invisible to you but not to those ahead.

Make it a habit. Eventually, you’ll see it come back to you. The feeling when it does is indescribable.

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Hemingway: How courage and depression go together

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This article is well-intended, but egregiously judgmental and woefully ignorant:

http://www.npr.org/2011/07/02/137540700/after-50-years-remembering-hemingways-farewell

If it weren’t for the inane babble puzzling over why Hemingway lived so intensely, this line would be the Winner of The Most Fatuous Statement award: 
“…in January 1961 he told his wife, Mary, that he could no longer write a single good sentence. And Hemingway would only settle for great ones.”
It wasn’t a question of settling for less than great, it was a question of how important it is to fulfill your purpose and dig some meaning out of life, even amid the unbearable. That purpose and meaning was taken from him, under the mistaken guise of treatment. 
Hemingway got electroshock therapy for his depression; a common side effect is to knock out your language abilities and cognition, sometimes for months and sometimes forever. The one thing that made his life endurable — writing like himself — was taken from him. 
Depressed people have more courage and determination than their non-depressed cohorts. Studies are finally being funded that verify this (which I’ll dig up later. Feel free to nudge me with a comment.) 
Think about that next time you curl your lip over suicide. It’s not about courage. It’s about unbearable pain and a degree of mental crippling that puts a valid life out of reach. 

Waiting and working at it until things improve is a reasonable thing to do: Hemingway waited and worked at it for  40 years, though with so little real hope for treatment. Talk about courage! It’s unthinkable how much courage he brought to bear on his life. His intensity and wild behavior were directly related to making his life bearable — and his work more compelling. Check his quoted remarks on that subject. What’s between the lines is breathtaking. 


The article’s remark about suicidal lineage is true, but poorly understood. A suicide in the family has the powerful effect of making suicide less unthinkable. There is often a genetic tweak associated with it, but that’s not all there is. The thing to know now is, we are not our predecessors; we can do more. Far more. 

Hemingway died before we developed SSRIs, SNRIs, and a tremendously improved understanding of neurochemistry, behavior, nutrition and psychodynamics. We have more options now. Lots more. Waiting and working at it is a real success path now. 
Be good to your depressed friends. You probably have no idea what they’re capable of, when they can be well again. Help them persist. 
It’s the most important thing to do: persist. A valid and bearable life is a reasonable thing to hold out for. Only death bars the door to healing. Things will change. 
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