Intrathecal Baclofen vs. intramuscular Botox for CRPS-related dystonia

If you’re considering injectable therapy for CRPS-related dystonia, you have probably heard of Botox (which is commonly used in spine-injured people to help with spastic bladders and other muscular issues), and you may have tried oral baclofen, which has the systemic and cognitive effects of its class. You may not know that baclofen can be injected into the spinal cord (intrathecally), providing therapeutic effects below the level of injection.

Based on the studies found in Pub Med, baclofen is far more effective, but requires more vigilance, largely due to it’s invasiveness and the equipment issues of intrathecal injections.

Botox doesn’t seem to do anything consistently in CRPS, for either dystonia or pain, except perhaps for prolonging the effect of stellate ganglion blocks; its rate of complications is low.

Of course, it does work for some people, but that can be said of almost any Level 2 or Level 3 medication used for this condition. CRPS is highly individuated, and its treatment certainly has to be individualized. This is the one constant feature of CRPS management.

On the basis of overall results, I would expect to see a wider acceptance of a more generally effective agent like baclofen, over the popular but generally insipid Botox injections.

Dystonia, unlike pain, is specifically crippling, even in a mild case. It impairs function in the most basic life tasks, from walking to eating.

INTRATHECAL BACLOFEN (ITB)

• Studied in CRPS since 2000.
• Results generally very good for dystonia, pain, or both. The best- designed study on dystonia showed excellent results.
• Doesn’t work for everyone (of course.)
• Dose and duration must be sufficient.
• Careful monitoring for complications.

INJECTED BOTOX

Pub Med only has two relevant studies.
• Of these two studies, one says it’s useless for dystonia, one says it’s great for pain.
• One study for allodynia: it’s no good.
• One study for improving stellate ganglion block: it’s excellent.
I haven’t looked outside of pub med. I’d be interested to see more solid data about it. This seems pretty random.

These bullet points, plus accompanying tables showing the studies and results referenced here, are in the PDF below.

ITBaclofen-vs-IMBotox

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Good findings and bad conclusions on post-op pain treatment

Today’s “egg in your face” article from the American Academy of Orthopaedic Surgeons (via Science Daily) says:
One out of five adult orthopaedic trauma patients sought additional providers for narcotic prescriptions

http://www.sciencedaily.com/releases/2014/08/140811125114.htm

Link to the original JBJS article: http://jbjs.org/content/96/15/1257.long

Overview

Sadly, the orthopedic industry is still blaming the patients:

“Many suspect that orthopaedic trauma patients may be at a higher risk for pre-injury narcotic use and ‘doctor shopping.’”

The underlying accusation of addiction in that prejudicial statement is wholly unsupported in the information provided.

Moreover, that prejudicial opening statement opposes their own findings about the psychosocial context of these people:

“The “doctor shopping” patients had an average age of 39.6 ±12.2 years, and were primarily white (89 percent) and male (63 percent). Forty-four percent were uninsured. There were no differences between the single-provider and multiple-provider groups with regard to age, sex, race, injury type, distance between the patient’s home and treating hospital, tobacco use, psychiatric history (depression, anxiety, attention deficit hyperactivity disorder, or bipolar disorder), or comorbidities.

[Emphasis mine.]

Findings vs. conclusions

Let’s address these points in order:

  1. Men handle pain worse than women. They’re not well-designed that way. White men of mature years feel entitled to be treated. (Note that people of color are more likely to avoid conventional care, for good historical reasons. Women feel greater pain for the same injury, but are used to being undertreated and ignored, also for good historical reasons.) If adult white men are restricted by pain, they’re going to get pain meds, because they must function, and they cannot function past a certain limit of pain.
  2. The uninsured (who were counted) and underinsured (who weren’t) who’ve had a recent trauma requiring hospitalization are going to be under geometrically more stress than they were before: issues of money, mortality, and function can be overwhelming; work may be hard or impossible because of the injury, so ongoing survival is at risk; and recovery may be threatened because of the interplay of stress, undertreatment, and lack of rehabilitative care due to insurance and financial issues… all of which exacerbate post-operative issues and grind in stress levels. Any guesses about what significantly higher stress levels do to pain and pain tolerance over time, not to mention healing speed and nutritional needs? Right. More pain meds are needed.
  3. Most importantly, there are NO CORRELATIONS with the biggest addiction of our age, tobacco, nor with psychiatric history or logistical issues; these folks aren’t out for an easy fix, they’re doing what it takes to get what they need. (It’s important to reiterate that these scientists discovered those points themselves, but ignored them.)

This last issue, alone, is a big fat hairy clue that postoperative orthopedic pain is undertreated nearly 20% of the time — not that 20% of these ordinary folks are suddenly mainlining narcotics or flogging them for a few bucks a tab.

Two more points deserve critical attention:

Patients with a high school education or less were 3.2 times more likely to seek multiple providers (p = 0.02), and patients with a history of preoperative narcotic use were 4.5 times more likely to seek multiple providers (p < 0.001).

People with higher education have better command of information, can generally get their hands on better nutrition, and can more easily seek modes of self-care other than, and in addition to, conventional medicine. Assuming that, just because people are poorly educated, they must be seeking drugs for recreational use rather than because they don’t have access to good alternatives for pain management (including less physically demanding work), is a straw-man argument with contemptibly classist roots. I suspect I’m a lot closer to a lot more poorly educated people, and have made a much closer study of the data around their decision-making processes, than these orthopedic surgeons.

As for the second point in that quote, there was no assessment as to why people were taking narcotics pre-injury, and the assumption that doing so is necessarily wrong is blatantly daft.

People who are already being treated for pain, and then go through something as brutal as orthopedic surgery, know full well what’s going to happen if they ask one doctor for all the pain control medication that they need. Because their physiologic margins are already being stressed, it is perfectly reasonable to expect their medication rates to be higher, but the guidelines for narcotic administration don’t allow for that outside of late-stage cancer treatment, because cancer patients are presumed innocent where other pain patients are not.

Moreover, people who live with pain tend to have a harder time moving and are physically slower to react, so they are more likely to get injured. I speak from bitter experience. It doesn’t mean the pre-op narcotic use is inappropriate, but instead follows logically from the nature of living in pain.

The echoing silence on that issue alone pollutes all the rest of the study.

Consider the source

This prejudicial article would need to look elsewhere for data to support the idea that ~1/12th of pre-op and 1/5th of post-op orthopedic patients are users or pushers or both, but it consummately fails to do so.

As a sometime RN in homecare and emergency care, as well as a longtime pain patient with an orthopedic-surgery-triggered iatrogenic disease and a wide network, I find it far more believable that orthopedic pain is hideously undertreated. On top of the usual issues around invisible problems and pain conditions, orthopedic surgeons really don’t get it about how deep and hard that pain is.

They trivialize pain and recovery time because they don’t see the patient through to 100% recovery, only to the point where they aren’t likely to have acute complications. Thus, they really don’t understand the impact it has on real life. Far too few orthopedic surgeons have undergone major injuries, let alone orthopedic surgery, and fewer still have had complicated recoveries.

Basically, in orthopedics, the blind are treating the lame.

The real issue: narcotic abuse is on the rise

I’m not dismissing the anxiety in the article. Diverting narcotics is a real problem with ghastly consequences, including a tragic death toll and wholesale disruption of families and communities. Dealing with that as an addiction issue from a public health standpoint and a community-engaged model is the useful approach. Demonizing patients is not.

The useful approach requires social spending, which is currently unfashionable despite the rate of savings (~$1:$3 to ~$1:$1000 annually, depending on issue being addressed, depth and efficiency) which it provides. Demonizing patients comes for free, but the downstream costs in health, productivity, long-term care, and ultimately police and court costs, is horrific, but rarely calculated.

It’s indefensible to continue to condemn patients to needless pain and debility, the misery and humiliation that accompanies it, and the outstandingly hateful and contemptuous treatment they get from “care” providers if they’re suspected of being drug seekers.

Repeating: I was an ER nurse; I get it about drug seekers. Criminalizing pain patients does not address that issue.

Related issue: addiction does not bar treatment

In my view, it is never acceptable to withhold appropriate treatment. People with addictions may develop pain syndromes; this doesn’t mean they shouldn’t be treated with them. It requires more and better communication from both doctor and patient, and the patient’s physical needs have to be met within the context of their behavioral needs.

If I were treating someone with addiction and pain, and found that narcotics were the best option for handling the pain, then yes, there’d be more monitoring, because that’s a practical form of support for their sobriety. Focused counseling and CBT would be appropriate, because they may need help with redefining sobriety to mean, “taking meds as prescribed,” especially as that involves the sobriety skills of honest information communication with care providers — a big step.

The current fashion for dehumanizing addicts is predictable, given the divide-confuse-and-suborn political environment, but it remains utterly unethical. The road to sobriety must be a feasible challenge before anyone can be expected to rise to it. This does not mean abandoning them with untreated or under-treated pain.

Outcomes

When the scientific establishment ignores its own findings to perseverate on an outdated, counterproductive, fiscally and intellectually indefensible meme that penalizes and further harms patients, nothing improves.

This is a problem — and because legislators and the public tend to listen to these organizations, in defiance of the hard data and common sense, it’s one that breeds lots of other problems, each one as unattractive, expensive, and useless as its parent.

Clinical takeaways

It’s important to distinguish between real needs and artificial worries. The clinical takeaways are threefold, in order to take that into account:

  • Orthopedic pain is undertreated roughly 1/5 of the time. Current treatment parameters do not account for a significant proportion of outliers, and should be used with appropriate flexibility.
  • Postoperative treatment is more problematic than ever. With nearly half the population still uninsured and many of the rest underinsured, and simultaneously pain treatment being examined more narrowly every day, then recovery, rehabilitation, and patient education around these issues is more important than ever. Every patient should go home with printed, illustrated aftercare instructions which include the following:
    • Expected timeline for stages of recovery to 100%, with instructions on how to track and record stages, and what to do for complications or setbacks before, up to, and including calling the doctor. No surprises, unless both you and your patient are surprised.
    • General, practical, ADL and work-task focused guidelines for gradually progressed activity, day by day or week by week as appropriate, until 100% recovery is expected — with instructions on how to handle variances and setbacks. No surprises, unless both you and your patient are surprised. These should ideally be written jointly by orthopedists, occupational therapists and physiotherapists.
    • Nutritional guidelines for healing. These are absolutely basic but doctors, especially surgeons, consider it beneath them. A bit like breathing is beneath them, really. Let’s focus on the facts, and the fact is that vitamins and minerals in appropriate forms and quantities yield enormous benefits (vitamin C, 500 mg BID, prevents 80% of CRPS conversions, for instance) and deficiencies in calcium, magnesium, phosphorus, B vitamins, D vitamins, protein, EFAs and antioxidants result in more complications, slower bone and soft-tissue healing, and greater post-op needs.

    Posting those instructions online in generic form, perhaps under a Creative Commons license to facilitate collaboration, could be very useful to countless patients and care providers. If you have such instructions online, please post a link to them in the comments here and share them wherever appropriate. People need that.

  • The data from the American Academy of Orthopaedic Surgeons seems good, but their stated findings are highly political, not logical or practical. Go to the data and use your own intelligence to draw conclusions, because politics change but the principles of good practice do not. We all need to be reminded of that periodically…

Postscript

Highly attentive readers will notice that the study mentioned no correlation with comorbidities. I can’t access the full text of the study, and in the outer material, there was no description of what they considered comorbid. It might imply prior illnesses or conditions, or it might not. Given the gaping holes in the work otherwise, it doesn’t make sense to weight this statement at all. There is no indication, on the basis of the available information, that prior pain or musculoskeletal issues were assessed or accounted for at all.

Links

Science Daily article, with quotes from the study authors: One out of five adult orthopaedic trauma patients sought additional providers for narcotic prescriptions

JBJS posting of the study’s outer material (full article only available with subscription; this free material is what the authors chose to show): Narcotic Use and Postoperative Doctor Shopping in the Orthopaedic Trauma Population

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Makes my brain explode — but now it can be repaired

It’s almost impossible to discuss this article without leaping out of the chair and waving my arms around, squealing with the sheer thrill of its deep and wide implications for treatment and understanding:

Precisely Engineering 3-D Brain Tissues

Using a 3-D printer, transparencies, and binder clips, these wunderkinder can create neural tissues that mimic the cellular proportions and relationships of real, living brains.

On this basis, here are some possibilities discussed in the article:

  • Watch how brain tissue responds under different circumstances, leading to new understanding of brain growth, disease progression and structure-dependent brain abnormalities.
  • Repair damaged brain tissue. With historic rates of traumatic brain injury in the most productive age group, this alone is world-changing.
  • With samples from patients, custom brain cultures can be grown, and drugs tested against them, targeting drug treatment that works on the first trial. This saves people who need CNS-affecting drugs countless weeks and months — even years — of untold misery, as different drugs get pushed through their systems in an effort to find one that works.

Harvard Med and MIT at their collective finest.

The great challenge, of course, is getting this OUT of the lab and INTO the populations that need it. I hope it’s not kyboshed by those whose profits depend on the current ineffective, inefficient, expensive, and unspeakably brutal systems of CNS treatment.

Let good medicine prevail.

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CRPS, ANS dysfunction, and chronic vertigo

The central nervous system is bathed in fluid. This fluid provides a buffer against shock, as well as providing a good medium for the transmission of chemical signals. (Electrical signals are handled by the neurons.) The central nervous system is extremely sensitive to dehydration, which is why headaches are so common: most people are somewhat dehydrated. We consider ourselves too busy to drink water and whizz it out again.

Water is also the main ingredient of blood and lymph. These two essential fluids bring nutrition to the cells, transport chemical signals such as hormones and regulatory signals, and carry away cellular garbage. When there’s not enough of them, that doesn’t happen very well. More garbage piles up in the tissues, aging happens faster, disease trends faster, our muscles get stiffer, it’s harder to recuperate from injuries and illnesses, our sex lives suffer, and we just don’t feel as good.

With that in mind, not having the time to drink in water, process it through, and whizz it out again doesn’t really make sense, but a lot of us are really attached to that idea.

Reality checks

One of the really ducky things about diseases like CRPS, especially when there is strong autonomic involvement, is that normal quantities of fluids (and vitamins, proteins, and other nutrients) are often inadequate to our unusual metabolic needs. It may be possible for a basically healthy person to meet all their needs with three good meals and three or four liters of water per day, but for systems so consistently under siege as those with CRPS, it may be impossible to meet metabolic needs within these (otherwise very reasonable) parameters.

I have several friends with terrible vertigo, due to autonomic dysfunction in CRPS. This isn’t the, “I held my breath too long,” kind of dizziness. This is the kind of dizziness where you can’t keep your feet under you, you feel like you’re going to throw up, and it JUST WON’T QUIT.

The mechanism behind this has only been researched recently. It’s not very well understood. I’m hoping for an informative comment from an expert on this…

What’s happening (partly) is that the vessels, which are directed by the autonomic nervous system, are flopping open too much. This means that the normal amount of fluid in the blood, lymph, and cerebrospinal fluid has to fill a space that’s considerably larger than normal. What you get is a type of hypovolemic shock, where the brain and major organs simply can’t get enough nutrition, oxygen, and garbage collection.

This normally happens on a short-term basis, after some assault on the system; normally, it’s either corrected quickly, or the person dies.

There are very few instances where this happens continuously over time, but with CRPS, some people have to live with it. It can make doing anything impossible, and if you try to imagine, just for 5 minutes, what it’s like to be that desperately dizzy and try to do anything — even get a fork to your mouth without bloodshed — you’ll see what I mean.

Sometimes, these symptoms can be somewhat reduced. There are pharmaceutical and mechanical approaches, each with its drawbacks and benefits. Since doctors (and many patients) tend to think in terms of pharmaceuticals first, let’s start there.

Pharmaceutical management

Whenever you think in terms of disease and pharmaceuticals, it’s important to keep in mind that:

  • Every system is unique.
  • Every system with CRPS is even stranger.
  • Unless you’re a doctor getting a visit from a pharmaceutical rep, there is no such thing as a free lunch. Everything you take in affects your whole system. With our systems under siege, it behooves us to be mindful of our chemistry.

NB: This is not intended to diagnose, treat, or cure any disease. Consult your physician with any questions, and if your doctor can’t give you a credible answer, get a referral to someone who might be able to.

Vasopressors, which can help restrict blood vessel size, have mixed results. They depend on the regulatory system being able to work somewhat, which is problematic in CRPS. Moreover, they have their own side effects, and given what a cocktail of medications most people with CRPS are on anyway, this can be quite noticeable. It has to be handled on a case-by-case basis.

Anti-dizziness pills, such as Atarax, affect the central nervous system and tend to make people sleepy and goofy. They are related to antihistamines and acid-suppressing medications (H2 inhibitors), and for those with hotwired immune systems and the nutrient assimilation problems common in chronic CRPS, they’re not without side effects. Moreover, because they address only the generic mechanism for dizziness, but not the particular mechanism for CRPS/ANS vertigo, they don’t necessarily help in these cases. Also, case-by-case basis.

Some SSRIs, typically used as antidepressants but extremely effective for nerve pain, can also provide support for the ANS. There is additional benefit to the use of SSRIs, because of their assistance with the nerve pain component of CRPS; when they can also improve the autonomic nervous system, it’s a big deal. Naturally, SSRIs being the idiosyncratic category that they are, it can take a few tries to find the one that works best in each person’s system. As I learned the hard way, getting the dose right can be a long and interesting task, given the idiosyncratic nature of our systems.

Mechanical management

Mechanically, it’s possible to increase blood volume by taking in lots of fluids, even if you already drink “enough.” “Enough” is a relative term, and what’s “enough” for a person with a normal autonomic nervous system may be “completely inadequate” for somebody with vertigo due to CRPS.

Blood pressure is a complex system, involving more than just fluid, vessels and the brain. Maintaining electrolytes helps contribute to a healthier fluid balance, and towards that end, sometimes doctors suggest increasing your salt intake. That only raises your blood pressure when you already have a predisposition to high blood pressure, so it may not be obviously useful; however, adequate sodium is important in maintaining renal function and supporting potassium levels.

Potassium is another key electrolyte, along with magnesium (found in Epsom salt), calcium, and bicarbonate. It doesn’t take much; four or five of the smallest grains of Epsom salt, stirred into a glass of water, can make a noticeable difference when you are magnesium depleted. Also, it usually makes the water taste better.

It’s easy to tell when you’ve taken too much, partly because it doesn’t taste good, but especially when it gives you the runs. Less is generally better than more!

Bicarbonate is better managed by eating plenty of vegetables, rather than trying to supplement and get the dose just right. Having an overly alkaline system doesn’t feel very good, either.

Calcium and magnesium are present in food, especially if you’re eating plenty of nuts and leafy greens. If you have CRPS, you really want to eat plenty of nuts and leafy greens! They provide so much in the way of A and B vitamins, antioxidants, minerals (which support cellular processes and regulation), healthy fats (which help your body absorb your nutrients and protect your nerves), fiber, digestible protein (which helps your body absorb the calcium), and so much else of what your body really needs.

Activity, even horizontal activity, even just stretching out gently in bed, provides the body with much needed prompting about how to keep things moving. It keeps your muscles loose, so that your body is more comfortable to live in; it also activates sensors in your joints which communicate with your body’s regulatory mechanisms, and this helps with maintaining blood pressure (one can only hope it helps enough.)

Any movement is better than no movement.

Changes in position should happen slowly, which is terribly frustrating, but it’s going to take as long as it takes. If your body doesn’t get to move, it forgets how to handle itself in movement. This becomes a negative feedback loop.

So, keep moving, even if you’re not moving in any way that the doctor would recognize. Frankly, most doctors are somewhat limited in their ideas of what constitutes exercise. Most of them have no trouble walking from the car to the office, let alone from the bedroom to the kitchen.

Don’t let perfection assassinate your drive towards improvement. Do what you can, and don’t sweat the rest.

  • If you can’t run around the park, walk around the block;
  • If you can’t walk around the block, practice ballet or t’ai chi with one hand on the back of the sofa;
  • If you can’t do that, fire up YouTube and do chair qi gong or chair yoga;
  • If you can’t do that, stretch out gently in bed, and do range of motion exercises. (This is a wonderfully pretentious term for moving each limb all the way up, then all the way down; all the way in, then all the way out.)

There is always something you can do to keep your joints active.

Moving your joints sends a message to your regulatory centers that they need to pay a little more attention to your blood pressure. That’s why it’s important to stay active. Our regulatory systems are screwed up enough; we need to keep them gently tuned, and be persistent about it, even when it seems absurd to do so. The habit of activity will serve you well for the rest of your life.

I’m aware that there are some herbs that have tonic effects on blood pressure and possibly the ANS. I would love to learn more about that.

Assume there is a future, and that what you do, even little things, can change how it goes.

That’s a good general policy, anyway. Especially with CRPS.

While I’ve known all this for many years, applying it to CRPS has been an education. When I’m able to focus a little longer, I’ll put together some references. Meanwhile, any of you who have references, either to support or contradict any of this, would be very welcome to post them in the comments.

I look forward to better science and better medicine for chronic vertigo in CRPS. It’s so thoroughly disabling, yet so thoroughly underrated.

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Scott Reuben and the poison in medicine’s well

In a stunning piece of timing after yesterday’s epiphany, this crossed my wire today:

“A Medical Madoff: Anesthesiologist Faked Data in 21 Studies” – Scientific American
http://www.scientificamerican.com/article.cfm?id=a-medical-madoff-anesthestesiologist-faked-data

“Beginning in 2000, Reuben, in his now-discredited research, attempted to convince orthopedic surgeons to shift from the first generation of nonsteroidal anti-inflammatory drugs (NSAIDs) to the newer, proprietary COX2 inhibitors, such as Vioxx, Celebrex, and Pfizer’s Bextra (valdecoxib). He claimed that using such drugs in combination with the Pfizer anticonvulsant Neurontin (gabapentin), and later Lyrica (pregabalin), prior to and during surgery could be effective in decreasing postoperative pain and reduce the use of addictive painkillers, such as morphine, during recovery. A 2007 editorial in Anesthesia & Analgesia stated that Reuben had been at the “forefront of redesigning pain management protocols” through his “carefully planned” and “meticulously documented” studies.”

More from the New York Times:
“Doctor’s Pain Studies Were Fabricated, Hospital Says”
http://www.nytimes.com/2009/03/11/health/research/11pain.html

And the Injury Board:
“The Fake Clinical Trials of Dr. Scott Reuben” http://cherryhill.injuryboard.com/fda-and-prescription-drugs/the-fake-clinical-trials-of-dr-scott-reuben.aspx?googleid=259290

It’s hard to convey the total horror of the event described here. This physician scientist, who ran the pain clinic at one of my old hospitals, published research that became the cornerstone of pain treatment in the US and abroad. After 13 years of successful, peer-review-published, desperately important work, he recently admitted the following:

• Not one single patient was ever enrolled in key studies.
• There was absolutely no basis for the numbers he cited; he invented them.
• He was paid a great deal of money to come up with certain results, and that is exactly what he did.

The most influential part of his career was a fraud.

The countless studies founded on his widely-publicized fictions are therefore meaningless, under the rules of scientific evidence itself.

The degree to which we depend on medical science to save us when we really need it — our helplessness at our times of greatest need — require us to have some faith in the processes that deliver our care. This isn’t just another massive fraud, it’s a devastating blow to the cornerstone of healing in the modern age. How can educated patients ever continue to believe that our doctors have anything of value to offer us? How can honest physicians bear to let this situation exist?

He could not have chosen a worse field to work in. In medicine, sooner or later, every field has to rely on pain medicine, and he has fouled the well from which the widest number of patients must drink. Scientific American got it wrong: Madoff was a piker, next to this.

The science of pain control and pain management has depended heavily on garbage cooked by a liar, served by intellectual catamites and eaten by the brainwashed. From there, it was inserted into me and mine, who were assured that this was the best that medical science had to offer.

Too bad there was no actual medical science involved.

…I apologize for the strong language. Can you think of more precise and telling terms to use instead? I’d be happy to change them, if anyone can come up with something better.

There are administrative questions such as, whatever happened to peer-review? Who the hell was looking at his notebooks and other physical evidence of scientific work? Why did it take 13 years for a “routine check” at Baystate to break his cover? What on earth were the most important science editors in the world thinking? How many of them are still employed — and why?

Those aren’t trivial, but they are not what looms largest in my mind. I think of Debbie, and me these past few years, and other friends I can’t name whose lives have been hopelessly distorted and sometimes horribly lost … because modern pain research has been built on one psychopath’s lies, which were funded and supported by a vast network of fellow liars, colluders, and the willfully blind.

It has sometimes occurred to me that the wrong people get sick.

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Refocus on what works: In memoriam

Debbie died yesterday. She was a never-failing source of encouragement and intelligent support on one of my key online CRPS support groups.

She died on the table, while undergoing a medical procedure. I don’t know exactly what it was, and given my respect for patient confidentiality, it’s none of my business.

She’s the first person to die of my disease, to whom I felt personally attached. Needless to say, it’s sobering as hell.

I’ve written about the need to attribute deaths from this disease correctly. I’m preparing my own final papers. These thoughts are nothing new.

But today, they are biting deep.

I’ve recently become highly politicized over rights abuses and intolerable corporate stature in my country. I have privately — and quietly — become convinced that the US healthcare system is so completely predatory, so opposed to its own mandate, that it will never offer healing for anyone in my position.

Debbie’s death has broken through my professional anxiety about appearing detached and scientifically sound. I have, at long last, become politicized about the most important subject in my life, after 25 years of personal and professional involvement up to my back teeth.

I have minimized my discussion here of what actually works. That dishonest omission has done us all a great disservice. I’m going to discuss what works, whether or not it’s FDA approved, pharmaceutically profitable, or adequately studied.

Medical studies are a shining example of the fact that we inspect what we expect, not necessarily what we need. The fact that studies have not been done on most modalities, or not rigorously done in double-blind experiments, doesn’t mean the modalities don’t work.

It means the studies need to be done. Period.

Where I understand the mechanisms of action, I will explain them. Where studies don’t exist, I’ll detail what should probably be explored.

But I have had enough of silence. I will not die as Debbie did. I will not die on the table. I certainly will not die saturated with soul-destroying pharmaceutical-grade poisons, as so many of us do.

I will find a better way. I will find a way that works. I’ll do my best to persuade others to study the modalities involved, and to fund the studies. My legislators will learn to recognize my name on sight, because their slavish debt to the pharmaceutical industry is absolutely intolerable and it’s up to me, and others like me, to convince them of that.

I wish Debbie a painless and peaceful rest. I hope her extraordinary husband finds enough strength and comfort to manage life without her.

For myself, I want the intelligence, resources and strength to find a solid cure, make it happen, and spread the word.

No more silence. It’s too much like consent or, worse, collusion.

I do not consent to the deaths of my friends.

With my eyes now open, I’ll no longer collude.

Let’s find a real way out.

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Assumptions & memory: elders are sharper than we think

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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Putting the "con" in mitochondria, the "funk" in dysfunction

Mitochondria (from the Greek, meaning “string grain” — yeah, it’s lame, but it sounds good in Greek) are independent little one-celled organisms that live inside your cells and make energy for them. If you ever studied the ATP cycle (also called the Krebbs cycle or the citric acid cycle, depending on where you went to school and how deeply they went into it), then you should know that this is where the ATP cycle takes place.

Without mitochondria, you have no way of converting food into energy.

When you were being conceived, half your cells’ genes came from your mother and half from your father. All of the other stuff that goes inside a cell came from your mother. This includes the mitochondria. (This is why mitochondrial DNA is used to track maternal inheritance: it always comes down the female line.) Your mother’s cell hosts conception, just as (normally) your mother’s body hosts gestation.

Mitochondria have a fairly smooth outer layer and a deeply-rumpled inner layer. Most of the action happens inside the rumpled layer. This is where the ribosomes, most of the fluids and loose protein, and the ATP-making particles hang out.

Cells, including mitochondria, need various proteins to do their work with. Large proteins get carefully handed from the outside world, through the outer layer of the mitochondrion (singular of “mitochondria” — sorry, it’s still Greek), then into the inner layer.

If the smooth outer layer is damaged, this makes this transfer process screw up, and the inner layer gets disrupted, ripping up the cell. Granules and nucleic acids all over the place. Bang goes that ATP production.

Those are some busted mitochondria.

This kind of damage happens in response to certain kinds of toxins (including certain medications for AIDS and all psychoactives — including antidepressants and pain medications, which seems especially mean!), occasionally from genetic disturbance, and occasionally as a consequence of illness — or nerve injury and its complications.

Mitochondrial dysfunction has been repeatedly and profoundly linked to neurogenerative diseases like Alzheimer’s and Parkinson’s; cell-metabolism problems like heart disease, insulin resistance and type II diabetes; and several diseases often mistaken for CRPS.

Not surprisingly, symptoms of mitochondrial dysfunction are the worst in tissues that use the most energy and have the largest number of mitochondria per cell: nerves, muscles, brain.

Recently, it has been strongly associated with CRPS. And the cherry on top: it plays a vital role in neuroplasticity, or the way your nerves and brain change — for better or worse.

Hell-o, “pain-brain.” We thought we knew ya!

Knowing why it’s so damnably exhausting to walk a mile, when it used to be fun — fun! — to run 3, is a bit of a relief. First question that leaps to my mind: How do I fix ‘em? How do I give them what they need to get better and protect themselves?  The answer seems simple: antioxidants are what’s needed to prevent and repair that damage (good explanation of that here) to the walls of the mitochondrial cell.  Mitochondria are both the biggest makers of reactive oxygen species and the biggest scavengers of them, so of course it makes sense that that’s exactly the kind of help they need when they can’t keep up.

Downing antioxidants by the bucketful is one way to get them in. Intriguing for three reasons:

  • Taking moderate amounts of the antioxidant Vitamin C after surgery hugely reduces your chances of getting CRPS. (Upper limb and lower limb surgeries were studied.)
  • There’s some indication that Vitamin K may help combat the progress of CRPS.
  • Taking antioxidants is pretty easy: delicious food, accessible pills, not bad.

Kind of depressing for one simple reason: it’s iffy whether, once you’ve got the disease process going, the antioxidants can get where they’re needed and save your poor beleaguered mitochondria. … Having said that, I notice that the writers of that article seem to be trying to sell something, and that makes me very suspicious of their conclusions.

Next, I’ll offer suggestions for patients, suggestions for clinicians, and then wind this up with a foray into the question of whether mitochondrial issues have a genetic component, like being X-linked — the way a cat’s fur color is! 

For people with CRPS — So what is a poor, confused CRPSer to do?

Two things that you hardly need reminding of:

  1. Trust your sense of your own body.
  2. Do what works for you.

Most antioxidants are not going to hurt you, without letting you know first (that is, make you nauseous or feel funny.) Take vitamin C in doses no larger than 500mg, since larger doses tend to trigger your gut to throw the C away. Go ahead and try stress-vitamins, co-enzyme Q-10, N-acetylcysteine, hair-skin-&-nails vitamins (these are really fat-soluble antioxidants) … try things, take what helps, and put aside the rest if they don’t do anything. Keep in mind that things change: what doesn’t work now might work later, and vice-versa.

Also, eat all the leafy greens you can get: seaweed snacks, Mom’s collard greens, kale krunchies, spinach salad, you name it. It’s amazing nerve food.

For antioxidant powerhouses, look for dark-red and dark-blue fruits: pomegranates, blueberries, red wine, chocolate (though some CRPS people have to avoid that for its nerve effects), mangosteen (my favorite fruit), cranberries, and so on.

Stay smart. Stay loose. Keep going.

For medical people — clinical takeaways:

Most treatment standards, particularly for CRPS, are based on science that’s over a decade old. They shouldn’t be changed blithely but they can certainly be improved. There is plenty of room for that.

The following points are intended as additions to the standards you follow for CRPS, as they are good guidelines for mitochondrial and neurologic support in a system compromised by CRPS.

  •  After any limb surgery, give Vitamin C 500 mg, QD or BID, for a couple weeks beforehand and 30-50 days after — or to metabolic tolerance, if that’s too much. Use a food-associated form for best uptake. This one intervention will reduce the risk of developing CRPS by 80%, according to the best current data.
  •  We assume your patients are taking an adequate multivitamin and are eating plenty of greens, dark fruits, and wholesome proteins. So make sure they are.  Direct them to food bank, food stamps or other food assistance as needed. Give recipes. (No kidding.)  2 benefits: better antioxidant uptake if taken with antioxidant-rich food, and increasing the patient’s own sense of agency/participation improves pain and affect.  (If you don’t believe in multivitamins, then get out of the supermarket/pharmacy and get some real ones.)
  •  Stress the antioxidant vitamins.  In acute CRPS, give water-soluble antioxidant vitamins in 1-3x the doses you’d give a healthy person.  Give fat-soluble antioxidants (A, D, E) up to 2x normal, testing levels as indicated.  Consider vitamin K inj.
  •  In cold/chronic CRPS, give water-soluble antioxidant vitamins in 3-5x the doses you’d give a healthy person (start at 2x and work up).  Give fat-soluble antioxidants (A, D, E) up to 2-4x normal, testing levels as indicated; consider weekly mega-dose D (as used in AIDS.)  Give vitamin K inj.  Check serum or urine levels as indicated, especially as we develop absorption disorders.
  •  Give “uber-antioxidants” like ubiquinone (co-Q 10), N-acetylcysteine, or glutathione. There are indications that these can provide substantial benefit — though again, not normally curative of chronic CRPS. They are impressive, especially for mitochondrial-dysfunction issues.

These ranges are empirical; if you can find the funding to do the science to develop more reliable ranges for this population, so much the better.

Adequate tissue oxygenation and perfusion can return substantial function and significantly reduce pharmacologic burden. Patients can demonstrate this, even where the data have not been published and peer reviewed. Therefore, use antioxidants rigorously and intelligently.

Image credit: http://www.vrp.com/antioxidants/-r-lipoic-acid-unique-mitochondrial-antioxidant-fights-premature-aging.  (Article’s not bad.)

Why all that anti-oxidation when the medical literature is not definitive?  2 reasons, which you ought to know for yourselves:

  1. Between the cortisol and systemic oxidative stresses, it can’t hurt and it will help something. You’ll see a distinct improvement in affect, activity, motivation and well-being when the dose is optimized, even if it can’t be expected to be curative.  Making your patient’s life more bearable is an essential part of your job.
  2. Let’s say this together, everyone: statistics mean nothing in the case of the individual.  Accepted, standardized medicine is what you start with, but, when your case is taking you out to the margins, you go to the margins, because that’s where your success is most likely to await.  

Keep in mind that doctors are not the only scientists interested in the human body.  Be prepared to look into other disciplines for leads when your own offers no good options.

Try Nursing, PT, Nutrition, Therapeutic Massage — you’ll realize that nobody knows more about soft tissue’s functional physiology in vivo than therapeutic massage science, and if nothing else, the exercise in intellectual flexibility might do you good.

The accepted style is very different, but the info they have is tremendous.

Forward-looking thoughts:

  • Consider infusing vitamin K into CRPS-damaged tissues. I would love to see studies on that.
  • Figure out how to deliver antioxidants in a targeted way. (Now! Please!) This would be a good way to save a lot of lives and end tons of misery.

… And for all curious people …

Let’s go back to mitochondria in reproduction. Kind of in an X-rated way, figuratively speaking.

We know that women have two X chromosomes. The Y chromosome is a stubby little object with hardly any data to use, unless you’re into color-blindness or hemophilia; this means women have quantities of extra data, which can have even more devastating effects (as in, Down syndrome.) So how to handle the extra genes?

Pick one. Simple as that.

Shortly after conception, when the cells are just dividing like mad and haven’t decided what to be yet, every single cell turns off one of its two X chromosomes; each of that cell’s daughter cells inactivates the same X chromosome. As the cells continue to multiply, then fill out, fold, bend around, and specialize, to become a whole, separate being, it means that X-linked traits appear in a mottled pattern throughout the body, as the two sets of daughter cells continue reproducing and passing on their particular X-activations.  Isn’t that curious?

As an especially decorative instance, cats’ hair color is an X-linked trait:

Cool, huh? Love her accent, too.

But this fact brings me to a serious question about mitochondrial disease. If mitochondria are sex-linked, is there a relationship between the X chromosome and mitochondrial expression? It seems improbable that there wouldn’t be, because mitochondria reside inside the cell, and the cell’s action is determined by the genes within it. The mitochondria had to have developed a special relationship with the X’s in the 23rd chromosomal pair, after all those millenia.

It’s generally accepted that mitochondrial diseases are due to toxification or to complex, multigenetic issues. Ok, fine. But what about mitochondrial vulnerabilities that don’t become pathologic until they are damaged in some other way? To what degree is toxification an issue related to X-activation? In other words, is mitochnodrial vulnerability related to vulnerabilities in the active X chromosome?

Is there a patchy characteristic to the early stages of mitochondrial destruction? — You know, the early stages of rare disorders, the time when it’s impossible to get a diagnosis because the doctors are all so busy chasing their own tails around your irrational symptoms and their own ignorance.

Is that initial “mottled” activity one reason why these diseases are so damn weird?

Link list:

Wikipedia’s entry on mitochondria is pretty good:
http://en.wikipedia.org/wiki/Mitochondria

On mitochondria and AIDS meds:
http://www.ncbi.nlm.nih.gov/pubmed/20818734
On mitochondria and pyschoactives:
http://www.ncbi.nlm.nih.gov/pubmed/18626887

Alzheimer’s Foundation:
http://www.alzfdn.org

Michael J. Fox’s Parkinson’s foundation:
http://www.michaeljfox.org/

United Mitochondrial Disease Foundation, listing diseases which are often mistaken for CRPS:
http://www.umdf.org/

Mitochondria and neuroplasticity:
http://www.ncbi.nlm.nih.gov/pubmed/20957078

A good rundown (so to speak) of antioxidants’ function:
http://www.ionizedwateronline.com/Antioxidants.html

Vitamin C around surgery.
Upper limb:
http://www.ncbi.nlm.nih.gov/pubmed/17606778
http://www.ncbi.nlm.nih.gov/pubmed/20224742
Lower limb:
http://www.ncbi.nlm.nih.gov/pubmed/19840748

Vitamin K and CRPS progression:
http://www.ncbi.nlm.nih.gov/pubmed/20378261

Getting antioxidants where they’re most needed. Ignore the shystering towards the end:
http://www.ncbi.nlm.nih.gov/pubmed/21422516

ALA and regeneration of Vitamin E:
http://www.vrp.com/antioxidants/-r-lipoic-acid-unique-mitochondrial-antioxidant-fights-premature-aging

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