More sleep, less pain

This study uses healthy volunteers, but the anecdotal evidence and related science in those of us with pain conditions does suggest a profound correlation between sleep and pain:

Extended Sleep Reduces Pain Sensitivity

Interesting that they specifically note that less than 2 hours’ extra sleep is more effective than a substantial dose of codeine!

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Awash in "wow"

We are putting together a program called, “CRPS: Art & Spirit.” We aim to collect information — and creative work — from those who manage this disease with extra poise, focusing on what works (rather than profits or politics) and finding our way towards a cure.

The paperwork involved in getting funding and charitable status is a bit more than I can manage. Getting help with that is my holiday gift from Mom.

Designing a web page is essential to getting any message across. After months of flailing, a design suddenly came together that includes everything we need. (Details and testing are still in process.)

A hurricane hit as I was preparing for my journey. Apart from a few bad pain days and a localized power outage that provided some enforced rest, it’s gone easy on me (so far).

I might be able to get some small-business breaks from my bank and phone company (and if I do, I’ll link them.)

The clouds are clearing in more ways than one.

Curiously, I’ve started wondering what I’d do if I no longer had CRPS. I realized that, given how much has been beaten out of me and how much under the surface has been revealed, I’d probably NOT sink back into anxious denial and run as far from this as possible (as many with solid remissions do.).

I could be wrong but I think I’d stay in the thick of it, riding herd on this project with the power and vigor of an _able-bodied_ person — one who doesn’t take it for granted — and keep working a cure for everybody who has it.

None of us is free until all of us are free. I feel it in my bones. Even a perfect remission won’t take me off this road. That well-honed determination will keep me in the game. And, with a structure & funding to back me up, it’s hard to see how any success could stop me.

But what do I know? I’m still in the thick of the illness as well as the work. No point in imagining that things are different, but it’s fun to think about.

Dreaming is free, and when barriers seem to be rearing up only to fall away, anything is possible. 

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White matter map and why it matters

This article describes a new, life- and reality-based map of the white matter in the human brain:

First Micro-Structure Atlas of Human Brain Completed

It addresses two crippling gaps in our understanding of the brain:

1. Hitherto, brain models have been derived from microscopic analysis of a handful (so to speak) of cadaver brains.  Since significant physical and chemical changes begin to happen immediately upon death, this puts a hard limit on  how accurate these models can be — and gives us no real clue about the true extent of the inaccuracy, because there were no living models to compare them with.

2. Until now, the science has focused on grey matter. We don’t even really know what white matter does, except convey the messages the grey matter processes. (It’s a bit like not knowing anything about your internet uplink — not ISP contact info, speed, bandwidth, nor hardware — even though your work and connections depend on your internet access. You can still get something done, but if anything goes wrong, where do you start?) One day in the near future, we’re going to be really embarrassed about ignoring white matter for so long.

This map was made as follows:
– using MRI that yields unprecedented resolution, able to provide solid estimates of such details as the width of different neuron fibers (!),
– done on living brains,
– in the skulls of 100 different people — a much more meaningful sample.

This is a great day in neurology. All of us with CNS disorders have a brighter future, with information from this map making its way into the science.

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Clarifying nutrition: focus on Source, Process, and Time

This table shows the antioxidant contents of 3,000 foods:

The Antioxidant Food Table

On first glance, I was annoyed, because there was so much redundancy in the foods examined: 11 entries for blackberries? Couldn’t they make up their minds?

On closer inspection, a deeper story emerged. Take a look at this and see what you find:

Product Label Procured in Antiox. (mmol/100g) Prep
Blackberries, cultivated USA 4.02 6
Blackberries, cultivated Solabaer, Sola, Norway Norway 4.13 3
Blackberries, cultivated Norway 6.14 3
Blackberries, cultivated Belgium Norway 3.84 3
Blackberries, cultivated, canned, drained S&W Fine Food, USA Norway 2.34 3
Blackberries, cultivated, frozen Local grocery USA 4.06 6
Blackberries, cultivated, frozen Wholesaler USA 3.89 6
Blackberries, cultivated, with sugar Findus, Norway Norway 4.76 3
Blackberries, Dessert Berries, without sugar, frozen Norske Dessertbaer, Norway (berries from Poland) Norway 5.98 3
Blackberries, dried, “Loch Ness” The Norwegian Crop Institute Norway 37.08 5
Blackberries, wild Norway Norway 6.13 4

Comments:

3 Purchased in grocery store, restaurant, cafe, bakery or marketplace.
4 Handpicked or received directly from supplier.
5 Previously published in Halvorsen et al. 2002 or Dragland et al. 2003
6 Previously published in Halvorsen et al. 2006.

Notice how much variation there is?

This table indicates what’s behind those eternally confusing reports about which food has the  most antioxidant activity.

With a spread of more than tenfold in the antioxidant activity in blackberries, you simply have to look at two more factors:

  • Source
  • Preparation
Understanding these two critical factors helps clarify a lot of red-herring driven confusion over which foods are most nutritious.

It’s a reminder of something we know, but tend to forget in the barrage of information and anxiety around food. 

  • Plants and animals need nutrients, water, sunshine and air to grow; the quality and quantity of these things affects what they produce.
    More species-appropriate and healthful growing environments produce more nutritious food than inappropriate or unhealthful environments.
    Different strains of the same species have different attributes, as someone who has tasted longhorn steak and kobe steak side-by-side could probably tell you.
  • Food nutrients are reactive, which means that heat and light are going to make them change over time.
    If they weren’t reactive, they wouldn’t be nutrients, because nutrients need to be amenable to digestion and assimilation — that is, physical and chemical reactions — before they can do us any good.
    Therefore, food nutrients are susceptible to heat, light and time.

Source matters

Cultivated blackberries from 3 different places had an antioxidant score that varied by roughly a third. That’s a significant variation!

There was only one sample of wild berries, which rated about the same as the best of the cultivated fresh berries from the same region. Wild strains of berries are generally more nutritious, so it should be said that this study does not specify if these berries were from a wild strain, or from a cultivated strain found growing in the wild. Not everyone realizes there’s a difference, but heredity matters (kobe/longhorn.)

Preparation matters

Processing makes a huge difference in the amount of nutrition available per, say, 100 grams.

Notice how the canned berries, which are subjected to considerable heat in the canning process, have the least antioxidants.

The frozen berries, which are meant to last awhile (thus being subject to time) have less bounce per ounce than some, but more than the canned berries.

The fresh Norwegian berries that travelled to Belgium are likewise impoverished, and the distinguishing factor between them and the Norwegian berries in Norway is the transit… time.

This may also be due to using a strain of blackberry that withstands transport better — a trait which, in produce, often goes with a lower nutritional profile.

If fruit is dried correctly (a big “if”), then it retains much of its nutritional value and has the considerable advantage of concentrating it into a smaller quantity. Thus, the 100gm of dried, possibly higher-quality berries turned out to have the biggest antioxidant kick — by a factor of roughly 10 over frozen berries.

Subjective matters

I’ve been thinking about this article since I read it a month ago.

Then, as I was struggling with brain fog this weekend, I got a pair of half-pints of organic raspberries from a large commercial producer which is famous for consistently mild, sweet-smelling berries that hold their shape despite being shipped all over. They were on sale.

I ate a whole package, hoping for that antioxidant kick that would chase some of the fog away. Not wanting too much sugar in my system (and hating to spend that much money in one sitting), I hesitated before starting on the second package, but no good. I might as well have been eating cardboard for all the good it did. I began to wonder if I should bother with raspberries at all, given how every bite I eat has to matter.

The next day, I stopped at a roadside stand and picked up a single half-pint of organic raspberries from a farmstand, for slightly more than the brand-name berries cost on sale, but less than they cost otherwise. (Farmstands are generally worth the gas I spend on finding and mapping them.) They were much smaller, much darker, and some of them were squashed. They wound up spilling in the car, and I pulled over to scoop them up and keep them from messing up the rest of my shopping. I quickly gave up on extracting them neatly, and just shoved the spilled half into my mouth.

Quite apart from the flavor explosion — which was an eye-opener in itself — within a minute, the fog had lifted. My eyes were sharper and my head was clearer than it had been in awhile. THAT was the antioxidant kick. It lasted for hours, and I got another one when I ate the second half.

Summary and context

A lot of the fuss over what to eat can be resolved with a little common sense and remembering what you learned in grade school when you were sprouting beans in little cups.

How fresh your food is, probably matters more than exactly what it is.

How well it was grown, probably matters more than the packaging.

And, if you’re lucky enough to live near farm country, roadside stands are worth your time.

If not, build farmer’s markets into your schedule, because they bring the fresh food right to your neighborhood, with very little time between the soil and you.

I’ve found that each bite of more nutritious food is more rewarding in every sense, and I wind up needing less to meet my needs. It’s economical in the long run, although I remember it took a few months of eating good food voraciously to catch my impoverished system up. That cost a lot up front, but it paid off in the end: my system became more efficient and my tastes evolved for satiation, not overstimulation. I eat enough and am genuinely pleased; that eternal nervous quest for more-more-more is gone.

Grocery stores are for filling in after the farmer’s market and roadside stands, in my view. I have a limited budget and stringent nutritional needs, so I’ve come to that realization the hard way. This study just reinforces my discovery in a different way.

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Suicide, including veteran suicide, handled back to front

This article discusses suicide among returning veterans:

Suicide Prevention Expert Outlines New Steps to Tackle Military Suicide

The up-side is, it brings more attention to this national shame: “..while only 1% of Americans serve in the military, the suicide rate of veterans accounts for [20 %] of the overall total in the US.” [Emphasis mine.] They’re overrepresented in suicidal despair, even at this time of epic national meltdown, at a rate of 19:1.

There are some good ideas (badly put) under this deceptive title (new? Hardly), with an unfortunate insularity and gee-whizz ignorance in parts:  “the effects on the mental health of active-duty service members, reservists, and veterans is only just beginning to be felt.”

Only just beginning to be felt? By whom? Reports started streaming out of this population from the start!

The horrific rate of PTSD, brain injury and subsequent/consequent suicide among modern veterans has been in the news nearly since the Iraq war started. And the effects were “felt” by affected veterans and those who love them from the beginning.

That was an astoundingly insensitive choice of words, and when a social scientist is astoundingly insensitive, it automatically makes me question his insight and judgement. After all, social scientists have to pay attention to social cues and have some social awareness in order to do their jobs well.

The suggestions made by this article are,

  • Reduce access to guns and other means of suicide.
  • Watch for sleep disturbances. 
  • Prescribe opioid medications carefully and monitor.
  • Improve primary care treatment for depression.

These instructions are useful and appropriate (though not new at all), but the order puts the primary burden in the wrong place.

The reflex is to consider first how to change the patient’s context and control, and second how to change the provider’s context and control.

But which person — doctor or patient — do the policy makers have more access to?

Which has broader (and more cost-effective) reach per person?

Where does influence and support really come from — especially when the patients themselves are desperate and don’t have the resources to face what they’re dealing with?

Hint: Only one of these two people is licensed, monitored — and paid to show up.

It might be time to focus first on how to change the provider’s context and control — in this case, train primary care physicians in how to evaluate for mental health issues without losing their own minds, and make it easier for them to be more mindful, conscientious and appropriate when prescribing CNS depressants such as opioids.

Policies regarding these things may need to be updated. Despite some alterations and improvements, they still focus on controlling the patient’s access to meds and autonomy, rather than on changing the provider’s involvement and awareness of what’s going on.

This is exactly back-to-front.

This is the best we can do??

At-risk patients — those with PTSD, intrusive pain, or some other confounding factor — need to be seen more often and have mental health screens at each visit. Since many of the well-tested screening tools are short checkbox quizzes, that’s a reasonable addition to care. Some can be filled out in the lobby by the patient.

This serves several purposes: the frequent care provides a disproportionate feeling of support to the patients, reducing despair and helplessness; if the visits feel excessive, it motivates the patients to improve their own resources and self-care, reducing passivity, which improves outcomes; and bad findings on the quizzes provide quantifiable, documented need for mental health care, which can then be provided in a more timely manner and with less argument from payors.

Speaking as someone with significant confounding factors (chronic pain, neuro dysregulation, and acute life stress) I’d be delighted to know my doctor and health care system would do that for me, even though I’m not remotely suicidal myself.

When the behavior of those who are easiest for policies to reach AND most influential in patient care is more appropriate and effective, then it makes more sense to go to the trouble and expense to reach further out into the population’s private lives and try to manage them there.

A more rational and effective approach might be,

    1. Train and retrain all primary care doctors to look for mental health issues. This is something that suicide prevention specialists have been screaming for for years. It’s mentioned last in this article, but should be mentioned first: people who commit suicide were likely to have seen their doctors within a month. Talk about a cry for help falling on deaf ears!

      But most doctors turn into deer in the headlights in the face of mental distress, because they have no real idea about what to do. There need to be better guidelines, a clearer path to mental health follow-up, and failure to meet basic requirements of care needs to create problems for the provider — as they inevitably do for the patient.
       

    2. Manage access to obvious methods of suicide, like CNS depressants and firearms. There are many profoundly depressed people who will kill themselves if it’s easy, but fewer who will really put a lot of energy into it, because energy plummets with major depression — along with impulse control. A deadly combination.

      Reducing access involves having primary doctors get more involved with patients who get CNS depressants like opioids and benzodiazepines; implementing and enforcing access laws to firearms and ammunition; and noticing at-risk people with drug and firearm access and giving them the training they need to reduce their own access on an impulsive basis. (Yes,that’s right, engage the patient’s own inner and outer resources, rather than simply impose limits outside their control.)
       

    3. Increase time span between impulse and action, giving second thoughts a chance to kick in. This is important, because the despair is stubborn, but the suicidal impulse comes and goes. Give it a chance to go, so the person has a future and a chance to recover.

      This involves, again, noticing them; engaging them to leverage their own capacity for self-management; and getting logistical support from those around them.
       

    4. Look for early signs, like sleep disturbance, mood swings and eating or weight disturbances. Don’t know why the latter signs aren’t even mentioned here, when they’re easier to notice from the outside. Veterans certainly have them.

      We’ve been pushing for effective education for all primary doctors around both mental health and pain control (which are tightly linked) for decades. It’s not new, it’s just ignored, underfunded, and badly implemented, costing billions in direct and indirect costs.

      Mental health and pain control are tightly linked because:

      • Pain is depressing.
      • Pain is limiting.
      • The helplessness of those limitations is depressing.
      • CNS depressants are, literally, depressing.
      • Depression and helplessness significantly increase pain response in the brain and nerves.
      • And back around we go.

      It’s a vicious cycle, keeping overtaxed minds between frying pan and fire…

      Lasting treatment success is tied to increasing someone’s sense of self-governance and engagement with life (reducing actual helplessness) not limiting their options and patronizing them into submission (increasing actual helplessness.)

      [Limiting options is necessary and useful for inpatient treatment, but is highly problematic in outpatient care — which is where most mental health issues take place.]

      That same engagement and sense of self-governance also reduces the neural system’s susceptibility to pain.

      It breaks the cycle.

      One of these people is not engaged in life. The other is. Which seems better?

      Let’s do all that now — at last — and see how much faster the suicide rates drop than at any prior point in history. For veterans, civilians, everyone.

      It’d be cheap, effective, and useful. It’d serve our veterans and increase productivity. It’d brighten up the lives of everyone affected by it. Is there a downside?

      Links:

      Suicide Prevention Expert Outlines New Steps to Tackle Military Suicide. ScienceDaily (Sep. 10, 2012)
      6,500 US Military Veterans Commit Suicide Every Year, International Business Times (April 2012).
      Combat duty in Iraq and Afghanistan, mental health problems, and barriers to care. NEJM (July 2004)
      PubMed search for “PTSD veterans” results.
      PubMed search for “TBI veterans” results. TBI stands for Traumatic Brain Injury.
      Make the Connection, bringing generations of vets together for mutual support and counseling.
      Suicides — United States, 1999–2007 Centers for Disease Control (January 2011).

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      Serious business: reporting bad doctors, saving future patients

      Most doctors do good. They do lots of good, all the time, every working day. They’re not perfect (nobody is) but they do far more good than most of us have a chance to.
      Moreover, most specialists were drawn to their specialty because they thought it was the coolest and most intriguing use of their time and skills.

      It’s helpful to realize that it doesn’t so much take brains to get through med school, as the ability to work really hard on your own behalf. Moderate intelligence is enough, if you can be a solid student. It’s just a lot of hard work, with a guaranteed career at the end of it. This might explain why so many docs are simply mediocre, and most of the time, that’s really all they have to be. The trick is knowing when that’s not enough.

      No profession — in fact, no large human grouping — is exempt from the reality of the bell curve. And this means that, while a few physicians are truly outstanding, a few are truly vile; a  few are famous, and a few are totally invisible; most are somewhere in the middle.

      Almost all docs are honestly doing their best, and when they give up (which sounds like, “It’s all in your head” if they’re chicken, or “there’s nothing more I can do” if they’re not) or screw up (which sounds like, “whoops… it’s not my fault” if they’re chicken, or “I’m truly sorry, I’m still only human” if they’re not) it’s because the science, their imagination, or their intelligence is not always up to the challenge.

      And that’s fair. Our science is vast but still inadequate to match reality, and not everyone is a genius, not even all doctors. We have to be realistic.

      A very few are exceptionally smart, exceptionally diligent, and exceptionally good at communicating effectively with patients. They are at one tip of the bell curve, where miracles happen and people beat the odds.

      A very few are exceptionally egocentric, have an exceptionally good act, and are exceptionally good at communicating with administrators (which is a special skill.) They are at the other tip of the bell curve, where others’ losses and suffering increase exponentially while the doc’s career blossoms in the adulation of those who don’t need them for care.

      A few docs are so insulated from consequences and so accustomed to power that they become something distinct: they do more actual harm than anyone outside Congress or the judiciary can manage, and since they can’t be voted out, they need to be stopped some other way.

      It’s rare, but, sadly, it happens to those hardest-pressed to stand up to them — and their obvious allies.

      Those of us with rare and complex diseases are bound to hear of them, because rare and complex diseases are prone to develop “cults of personality” around physicians and institutions that get a good article written about them because the subject itself is cool.

      These vile docs are a tiny, tiny minority, but they do exist, and sooner or later, we have to deal with them ourselves or aid our friends who do.

      In a litigious country, it’s important to know what the agendas are. So let’s be clear about one thing, before going further with this article.

      • Those of us with CRPS and related conditions are not vindictive, we are desperately in search of effective care.
      • We typically exhaust all reasonable means of resolution, long after any normal person would have given up in frustration and despair. 
      • So, by the time WE are ready to trash a doctor or an institution, they have earned it — in spades.

      The merely careless, ignorant or foolish are damaging, but still not worth our very limited time and energy.

      When you really have to stop a doctor, you’ll know.

      While I do believe in evil, I don’t think anyone is past saving… but in order to redeem themselves, some people have to lose what they hold most dear. They have to hit bottom.

      In rare cases like this, where the lives of others are fodder for the cannon of someone’s willful and soulless arrogance, I have no trouble with that. Let ’em hit.

      How does that happen?…

      By them losing enough of what matters most to them, that they have to either change or fail. Bad doctors in rarefied positions have huge egos and huge paychecks, and in practical terms, that is what matters most to them.

      Egos and paychecks are tied together by reputation.

      If you’ve been a victim, you can help re-adjust their reputations to something more in line with reality. This could really aid their personal growth. (Nice way of putting it, eh? Still true.)

      If you’ve discussed it online and you’ve kept your paperwork, you’ve done most of the work already. It just involves cleaning up what you wrote to your friends, adding a few links, and laying your hands on the documentation created and collected along the way. I’ll write more about that soon, but for now, you can start with what you can easily get.

      So here are some ways to do the most good:

      • Report the physician/s to the licensing board in your state.
        You can’t do much about what happens after that, but it goes on record and makes that doctor’s/institution’s future screwups harder for them to do damage control on. And there WILL be future screwups.
      • Review the physician or organization online.
        These review sites get read by patients, doctors, and doctors’ staff, so patients are warned by your record of consistent stinkery and — bonus! — a really stinky review often gets back to the physician via other physicians, providing “reputation readjustment” among the very people they most value. It sounds cruel, but hitting them in the ego is second only to hitting them in the pocketbook in terms of the salutary effect you can have once constructive efforts have been exhausted.
         
      • Submit letters to the editor in that doctor’s or institution’s area.
        These are followed by the PR departments of hospitals, government agencies and universities (this means that university hospitals will have a double dose of PR departments.) Docs who make the institution look bad, cost money. Once they look like they’ll cost too much, they lose their jobs… And, at higher levels, find it very hard to get another one.

      In the end, maybe it’s not about whether you can get what you needed in the first place. Sometimes, it’s about protecting others, your cohorts in need. There are a lot more of them than there are of either vile doctors or great ones, but at least let’s steer them away from the vile. You can save lives this way 🙂 …

      Links

      …With surprisingly little effort, now that you know where to find all the links you need to get started.

      How to report damaging and dangerous doctors

      AMA FAQ on reporting physicians:
      http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/frequently-asked-questions.page
      Don’t be intimidated by the prim, imperative language. You’ve probably done almost all of that already.

      Contact info for physician licensing boards in all 50 states:
      http://www.ama-assn.org/resources/doc/ethics/state-medical-boards.pdf
      This is who has the authority to revoke a vile physician’s right to practice. A consistent record of vileness can’t be overlooked once it gets to this level.

      How to review your providers online

      This site is well known and widely used. Even though it’s generic, physicians themselves have told me they fear bad reviews here:
      http://www.Yelp.com/

      Doctor-specific review sites:

      http://www.vitals.com/doctor/rate
      Reputable. You need to register.

      http://www.healthgrades.com/
      Find the doctor, click “About This Provider”, look under “Patient Satisfaction,”  and click “Fill Out a Survey About [doctor’s name]”.

      http://www.ratemds.com/
      Looks rudimentary, but it’s been picked up by several national news outlets. Also, it has the perfect URL for its mission, so it will grow.

      http://www.healthcarereviews.com/HealthcareRating.php
      Seems relatively new. Could be worth it, if it saves one more person.

      http://www.change.org/
      Ideal for institutional-level stinkiness. You can set up a petition and this org will do most of the legwork to get others with relevant interests to sign it. This then gets mailed to the institution with aaaaaall those names on it. Also, if it’s a good story and the news folks are awake, it can hit national TV. Now THAT’s pressure!

      Letters to the editor
      – Guidelines for writing letters to the editor: http://www.pnhp.org/action/how-to-write-an-op-ed-and-letter-to-the-editor
      Most important advice: keep it focused, human, and snappy. Cite relevant recent news (on the institution, the doctor, the disease, health care, etc.) so it feels like part of the larger reality (which it is.)
      – Links to major news outlets’ Letters pages, with submission guidelines: http://www.ccmc.org/node/16179
      – Or search “letters to the editor [your state or city]” for more relevant links.
      These not only come back to the hospital administrators, but are followed by politicos. It’s a good way to make a big stink, especially given a good paper trail and a link to your petition. If you’re lucky, it could trigger some investigative journalism.

      You can also research investigative journalists in your area, and pitch your story as an idea for a project. This is more time-consuming than the other options, and not all of us have that time or can make those contacts.

      Not the last word

      Once a reputation has been trashed, it’s very hard to recover… And sometimes that’s the only way to keep these hateful, [expletives deleted], predatory, self-serving, [more expletives, really vile ones, also deleted] from hurting others.

      It would be helpful if more doctors stepped up to the plate and helped corral their own. It’s this damaging minority of trolls who stain the image of all doctors.

      Any physicians who know of means to do that, it would be tremendous if you’d let us know… If only to assure us that some effort is being made. Even after roughly a decade as a nurse and another as a patient, I know of no mechanism that still lets you police your own — so if it exists, it’s awfully coy. It’s too easy to feel abandoned by the profession when we wind up in the hands of someone like this, and see the colleagues near them just shut up and knuckle under. If there were a wider pool of colleagues they had to answer to, it would help us to know that.

      If you’re in the awful  position of needing to use this info for yourself or a loved one, please comment and let us know how these methods work for you.

      Best of luck. May all your future doctors be good, capable, and really know their jobs.

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      Pain is a pity, but really …

      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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      Reading uses split focus in the eyes and fusing in the brain

      This study looks at how the eyes behave when reading:

      http://www.sciencedaily.com/releases/2007/09/070910092543.htm

      It explains an observation I first made about 35 years ago, sitting on the rug and watching my family read.

      The old assumption was that both eyes look at the same letter at the same time. Speaking as a reader, I had sometimes wondered about that, especially when you read in chunks rather than letter by letter. I felt like  my eyes weren’t quite together, and when I looked at my parents or brothers reading, especially when I looked from below, their eyes seemed to focus a whisker or two below the page. If they were absorbed and reading fast, their eyes seemed to focus further below the page, like they were physically climbing into the book eyes-first; if they were less intrigued, their focus was nearly exactly on the page.

      It turns out that, when reading, the eyes focus a letter or two apart, and that polysyllabic portmanteau words can be read half by one eye and half by the other. The slightly split image is joined in the visual cortex of the brain by a process called fusion.

      Fusion combines the slightly different images from each eye in the primary visual cortex, right at the rear of the brain. It serves several purposes: gives us the complexity of 3-dimensional vision; lets us interpret faint images more accurately; and, in reading, it apparently lets us move faster.

      Focusing a letter or two, or even half a word, apart, would partly explain why my family’s eyes seemed to be focusing slightly below the page. When they get around to studying avid readers reading avidly, I think they’ll find that the eyes can diverge quite a bit more than a letter or three.

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      Neuroscientists show how brain responds to sensual caress

      Until now, medicos thought that first we perceived touch, then we assigned meaning to it. This study indicates that, in heterosexual men anyway, meaning is assigned to touch at the same moment the touch is perceived.

      http://www.sciencedaily.com/releases/2012/06/120604155709.htm#.T84zYXI1EKw.mailto

      Fortunately, they do plan on investigating other demographic groups, including other ages, gender and sexual orientations.

      I tend to assume that men are hot-wired to respond positively to sensual touch, in a way that seems pretty indiscriminate to many women; and, of course, straight men are socially far less likely to feel all that vulnerable or threatened by those who touch them than most other demographic groups.

      It’ll be interesting to see what turns up when they examine the responses of demographic groups with more inflections around tactile sensation. This is an interesting start.

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