My own health took a hard dive late last year and the damage continues to evolve…
…On top of an increasingly human-hostile political system and increasingly deadly climate.
So, yeah, sitting here on a big pile of crap. But that’s not the problem.
What really bugs me is this relentless, quiet, basso-profundo voice murmuring in the back of my brain, “Hurry up. You don’t have much time. You, personally, don’t have time to waste. Pick your focus. Nothing else matters. Get to work. You don’t have much time.”
I used to have a lot of projects running at once…
I didn’t tell anyone, but I secretly hoped I’d be able to run again. I used to run 4 miles up & down a canyon in the redwoods before work most days. It was glorious. Before that, on the other coast, I ran 5 to 10 miles along the banks of the river in Alexandria, Virginia, because it felt good and kept my head clear for work on the HIV ward. I ran from one place to another because it was faster than walking.
Yeah. Well. Between dysautonomia screwing up my circulatory responses and adrenal glands, the tissue fragility of mast cell dysfunction vs. undiagnosed EDS offering to rip holes in my tissues again, and the recurring exercise intolerance, I can let that one go. I enjoyed it at the time, look back on it fondly, and intend to be grateful for that much.
I was going to start a business with a line of absolutely stellar pain creams I came up with. Seriously good stuff! It’s at least as good as the medical marijuana salve I used to make from top-shelf medical-grade bud — but totally legal everywhere! I was looking forward to getting that out to my fellow painees, doing some good and making some money. (Comment if you’re interested. I could be persuaded to sell my stock-on-hand.)
Instead, I’m willing my recipes and equipment to a friend who knows people. She can get it out, and make more when that’s gone. Meanwhile, I’ve got a few hundred bucks locked up in the only exception to my “2 piles” rule for money: 1 pile (my paycheck) for monthly expenses, and 1 pile (an insurance account from the Worker’s Comp branch of the higgledy-piggledy US system) for treatment and survival. That 3rd pile, which belongs to the business and only to the business, is gathering dust. It might help her get started.
As regular readers know, I once hoped to make my own safe home to age, work, rest, and die in.
The downside to owning a home is clearer than ever, and to a limited budget and limited body, it’s a disaster waiting to happen. That dream is dead, staked, burned, and the ashes are buried at the crossroads.
I love fixing sh-tuff. The dopamine wave is delicious. However… too many piles of sh-tuff waiting to be fixed, plus associated tools and supplies.
I’ve donated, bartered, and tossed away more than I even knew I had to spare. So far, I don’t really miss it.
Months ago, I gave up all my arts & crafts except writing and drawing. (And making masks.) I came up with some chirpy sounding reason, but it was about clearing my agenda and narrowing my focus.
There’s something intense about that voice. I look back and realize I’ve been responding to it since before this GI crisis evolved. Thinning out my pursuits. Thinning out my belongings. Thinning out my life.
Narrowing my focus long before I could hear the words this clearly.
For awhile, I thought it was a symptom of wonky chemistry, as I’ve had to do that medication square-dance that people who need neurotransmitter stabilizers have to do now and then. Chemistry is pretty good in here now, and that voice is clearer than ever.
So, here’s what there is to work with:
* I’ve done a lot of writing and training.
* The biological-sciences part of my brain has kept its doors jammed open, despite all the other closures.
* I’m an honest enough historian to know how too many people have been shut out of the process of using their health care systems, due to gender, race, class, and lousy sociohistorical times.
* Me and my friends have developed some powerful tools for being seen and being believed.
* Also, we’re pretty delightful cartoonists. (Hey, it’s a great teaching tool!)
It might be time for all of this to come together. My mission, should I choose to accept it, is to “drive” turning all this into a body of work that can continue teaching, training, and translating between chronically & profoundly ill patients and the rest of the world, long after I’m gone.
I have only 2 jobs now: stay as well as possible for as long as possible, and craft that legacy.
It’s frightening to contemplate pushing everything else off my plate, but the experience of the past year has shown me, over and over, the peace and release that happens after.
I don’t have to find the perfect home, although I’d sure be grateful if it landed on me and sucked me right in. (I can’t pack myself up to move one more time.) I have to make this one work better, and get on with the rest of my life. I honestly don’t think I’ve got a lot of time.
But then, I’m not sure that’s the point. Maybe I just can’t focus on more than 2 jobs anymore.
Oh boy, another brain dump … This one on how to work on getting worsening tendinitis to back off and let you get your life back.
=================================== I’ve been through the worst possible scenario that started with this kind of overuse pain, and the worst possible things went wrong just short of amputation, and my entire life got wrecked.
Also, I was a nurse, and what with one thing and another, I think I’ve seen a lot of ways this can go. So, I do hope you’ll forgive me for offering some perspective and advice from the sharp end. It’s wholly well-intended and very much from the heart. I do not want anyone to go through a tenth of what I did.
Firstly, it’s usually possible to rehabilitate tendinitis, IF you are sufficiently wise and adult about it. (Easier said than done!)
Secondly, doing so takes time; give it 2 years, considering how widely it affects your life right now.
Keep in mind… *those two years will pass anyway.* Wouldn’t you rather be better at the end of them, rather than facing a lifetime of being handicapped in all the most fundamental and enjoyable tasks of life? Trying to live without using your hands is no way to go. Trust me on this.
It will require changes, some of them major adjustments, and some of them minor adjustments to what you already do.
There are several aspects to address, none of which are optional, but all of which have different things to try:
– Positioning during the day (when we do 95% of our activity.)
– Positioning during the night (when we do 80% of our healing!)
– Rest & recuperation time (without this, nothing improves for long.)
– Rest & recuperation physiology (nutrition & pain control.)
– Adapting life tasks to ease up on your wrists (this requires professional help to get started with, so the physical dynamics start off right and you learn what “good enough” really is and what it isn’t.)
You’re obviously a very bright and rational person, and I feel very shy about stepping forward here, but you’re doing what I did and what many people do, and smart and well-informed as you are, it’s just possible you’re overdoing to the point of damage, and that damage IS almost certainly recoverable and possibly totally preventable. It just takes a bit of time and work first, then you can get back to the best and most important things when you’re better. (Never give up on getting better.)
– Positioning during the day
Talk to your doc or physiotherapist about whether a brace would help or hurt your wrists. It depends on where the tendinitis is and what the triggers are. Alternatively, learning to tape them may be better. (I got a whole extra 6 months out of my right wrist with strategic taping.) The right structural support can change things. (As can the wrong structural support, but not in the good way.)
I assume you’ve been to your doc and have discussed that 🙂
– Positioning during the night
Few docs know this trick (my surgeon did), but it’s absolute gold: Wrap towels around your elbows at night so you can’t bend them up in your sleep. Since >80% of recovery and healing happens during night-time sleep, the more you can protect your arm tissues during that period of time, the better. Bending them up cuts off that process. Simply cuts it off. So, unbend.
Since you have this tendinitis, there’s a ~90% chance you sleep with your hands tucked up by your face. It will take some adjustment (sure did for me) but that position is about to change. You clearly depend on your wrists too much to let this go on, so *let* the nerve and tendon pathways heal at night, and see what that does for you over time.
This one thing alone has “cured” some people of their daytime symptoms. It’s terribly important — it repays perseverence.
– Rest & recuperation time
Yup… put the hooks, needles, etc., down for a few weeks to a few months. I’m sorry, but healing takes time and there’s no shortcut to this. The good news is, the time WILL pass, and you’ll be better for it. (I wish I’d done that!!!)
The most helpful guidance on “how long?” is probably from a rehab speciallist called an occupational therapist. They’re technically similar to physiotherapists, but they focus on the mechanics, tasks, and demands of daily life. THey’re more dialed into the practical application of the larger issues that physiotherapists and physicians work in.
Since you’re still doing these things despite the pain, I figure your doc may not be *completely* up to date on just how much this is interfering with your life and activities. I’m an old nurse; I’m not wild about doctors; however, this is a great time to get re-acquainted with yours — because he or she can sign you up for OT and PT to help you rebuild your tendons without further damage, and rework the hand-tasks of life so the *overall burden* of wrist-stress is better distributed and *still* gives you time to do the things you love to do!
– Rest & recuperation physiology
Tendinitis can be solely due to overuse, or it could be due to overuse plus other factors. (E.G., I have a fairly normal variation in my radial muscle, where the edge of the muscle bundle is sharp; it wound up scraping and irritating my radial nerve so much along that edge that I had to have a chunk of the muscle cut out. I also had carpal tunnel space that was simply tiny. That had to be opened up so the nerves and tendons could fit without hurting each other.)
Basically, if something mechanical really needs to be dealt with, it’s wise to deal with it so you can get on to the good part — getting better. (I’m no fan of surgery either, but sometimes it makes sense.)
Pain makes your body tissues sticky, and sticky tissues get gummed up; gummed up tissues hurt more because they can’t move right or work right or clean themselves up properly. And round and round we go.
Thus, less pain with better hydration (to clean out the sticky stuff, quite literally) makes for better healing. Two things can have significant effects on pain — nutrition and medication.
Wild fish and grassfed butter (bring on the Kerrygold!) are known to reduce inflammation, improve metabolism, and support healing. (Conventional butter and farmed fish, sadly, do not. Long explanation r/t histological metabolism.) Produce of all colors make a huge difference in healing.
Even with a great diet… in our modern messy world, and with a fairly longstanding pain issue evolving, it’s not ideal to depend on the finite number of calories you can eat to get all the nourishment your body is hoping for. Fish oil (very fresh: Nordic Naturals and Kiva are known to have good fresh processing and delivery methods) and, of all super-easy things, vitamin C are outstanding for inflammatory pain and nerve healing. As a long-time painiac, I recommend 500-1,500 gm daily of Ester-C, because it releases itself slowly and is the most digestion-friendly vitamin C I’ve ever used. Vitamin C works by refreshing all the other antioxidants. Wonderful stuff. Your nerves are among the biggest producers and biggest users of antioxidants; right now, they need more, but can produce less, so it helps a lot to make up the deficit.
From my own standpoint, I consider a good food-based multivitamin essential, because I’ve seen in myself and in so many others just how much of a difference it makes in healing time and recovery completeness. However, I realize many have strong feelings about supplementing with multis, and I don’t want to seem contentious 🙂
Ibuprofen/paracetamol, where you’ve got plenty of hydration and good nutrition, are terrific for reducing inflammation and knocking back the pain, of course.
– Adapting life tasks to ease up on your wrists
So you get to keep them for the rest of your life 🙂
This is where you want to start with an Occupational/Physical Therapist, rather than doing the natural/easy thing and trying what your friends have tried.
Why’s that? Easy — because of muffled signals. Since you’ve been dealing with this for awhile, you’ve gotten pretty good at ignoring some body signals, and one thing these pros can do is help you learn *which* signals are right, and which ones can be safely ignored. Once you get the parameters in mind, then you’re better equipped to choose your own adaptive gear from there.
Having the outside pair of eyes, which are so well-educated, is a great help in readjusting life and redistributing the load on your body.
I hope that’s helpful, and I hope you don’t mind my hopping onto this so enthusiastically. It’s my mission, now that I’m on borrowed time, not to let anyone else endure any of the horrors I did
We have to try some fairly startling chemistry in order to find the right support for our weird and wacky systems. It’s not a joke — but it can be a circus.
Years of nursing — in home care, acute care, HIV care, emergency care, all sorts of things — and, of course, the independent study I wound up doing along the way — most of the time, having no health insurance of my own, because being full-time at one facility was intolerable so I spliced together several part-time jobs in order to keep my mind working — where was I?
Oh right — getting safely off of problematic medications, which I’ll call “detox” for short. We usually think of hard drugs or alcohol when we say that, but the underlying mechanisms and the affected structures are the same. Logically, it works.
I could bore you to tears about the metabolic work of detoxing, but I won’t. I’ll drop in a brain-dump I just did for someone who has had to come off of Lyrica, the most fashionable med for CRPS right now (look here for the background on its fame), and — like many! — has not been able to recover former thinking, memory, and personality. Hopefully, it will return in time. In the meantime, helping the body clear out the last of the med, thus reducing the background strain, could help.
One thought before proceeding … it’s old news now (at least from 2009, Çagla Eroglu et al.) that Lyrica kills new synapses. In other words, if you get that blank, stupid feeling when taking Lyrica or Neurontin, it’s not imaginary.
This class of meds actually works by slowing down the rate of “excitement”, or activity, across the synapse. It does so in a way that prevents further synapse formation. Normally, new synapses keep forming throughout life. Making use of that fact is the best way to battle age-related brain diseases as well as chronic pain.
There is a ton of dense “science-speak” surrounding the fact that the very thing that makes it work short-term or for occasional use, is the very thing that makes it problematic for chronic and long-term use. That’s a complex issue. The precise nature of this activity has only become apparent over time, and medical science hasn’t really figured out what to do about it yet. Meanwhile, buyer beware.
This is going to take a few more years to shake out. In the meantime, keep a diary of what works and what doesn’t, and how goofy you seem to be. Note where your meds change. Look for relationships. Talk to your pharmacist and your doctor. Keep them in the loop, even if you — or they — don’t always agree.
We and our care teams need to work together, and as the patients, the burden of managing that falls on us.
Don’t overthink that — if it’s working for you and you don’t notice the deficit, then think carefully before switching. It’s not that those who do well on it should change, it’s simply that such a med does not belong on the first line of treatment, but in the second or even third. Less synapse death is better, usually!
The point of putting gabapentin/pregabalin in the second or third line of treatment is that, if the other stuff doesn’t work, then those who need Lyrica will still get to it, after trying the meds that’re less likely to be problematic.
Anyway, here’s the brain-dump on detoxing from almost any med, with some special notes about this tricky class.
BTW, this works for narcotics too. In that case, be especially diligent about easing slowly onto the liver-cleansing stuff, because you don’t want to clear your opioid receptors too fast for your body to cope with. “Easy does it.”
If you’re interested in suggestions, I sure do have some. I had to get off Neurontin, Effexor, and a few other heavy-duty nuisances, and I used to be a nurse and helped an awful lot of other people deal with this…
If you’re not interested, I understand, I don’t mind, and please just ignore the rest of this 🙂
[I left that in because it’s important to realize that not everyone on a support group wants advice — some just want to vent.]
Normally, going off of one major med is part of a larger task of re-adjusting the whole medication picture. There are 3 important elements to this process:
Clearing out the old med
Trying something different
Firstly, of course, lots of hydration (yes, the bathroom trips are work, but your blood, lymph, and skin do need the fluid to clear things out, and your brain and spine need more water to rest upon when they’re suffering.)
So, as you reach for your water, here is the rest of my riff on detoxing from meds.
Clearing out the old med:
The point is to clear the old stuff out of your system. This means supporting your body’s “housekeeping department” — liver, kidneys, blood, lymphatic system, skin.
SInce gabapentin dissolves itself readily in fat, it hangs out in your system. (Every cell wall and every bit of white matter in your body uses fat. It’s not optional.)
Your kidneys take the burden; your liver doesn’t seem to do much to it, as most of the drug is excreted unchnged. That doesn’t mean your liver doesn’t have to deal with it as it passes through, though. (Fat-soluble drug in a high-fat organ.)
These are both blood-rich organs, so that’s why the artichoke and dandelion (root in tea, or leaf in salad) can be useful — they support the liver’s detox work. Also, milk thistle seed (silymarin) is in the same category as artichoke. I’ve always used whole seed and ground it fresh, as thats cheap (except for being hard on the coffee-grinder) and works gerat with no side effects, but extracts and preparations are available too.
Any one of these (artichoke, dandelion root, dandelion leaf, milk thistle seed, silymarin) is fine. Whatever works for you.
Check with your pharmacist!
Check with your pharmacist before adding this stuff to your day. There are meds which these cleaner-uppers can interact with by cleaning up the liver. For instance, if you’re on chemo, save this for after you’ve finished the chemo and are rebuilding yourself.
A good pharmacist knows this, and can check scientifically-developed references for more info.
The other aspect of clearing the med out of your system is supporting the “mopping-up” part of the housekeeping team — your blood and lymphatic systems. Green tea, echinacea (mix it with lemon & honey to make it tolerable), melon (fruit or juice), and citrus are all good for this. If you can find citric acid from fruit rather than corn, that can do a good job too. (There’s something odd about the corn-based citric acid — it tends to trigger indigestion and gastritis in the vulnerable much more than the fruit-based citric acid does.)
Any of these (green tea, echinacea, lemon, lime, melon, citric acid) are good, not only for helping get more water into you, but for helping your lymph and blood to “scrub between the cracks” and pull the rubbish out from your cells and clear it away.
Lymphatic support: start gently
Start slowly and work up, because you don’t want too much backlog clearing out at once. If you start at a high dose of green tea or echniacea, you can wind up with swollen lymph nodes, because your body can detox faster than your lymph and blood can wash it away. Give it a chance and work up gradually to a therapeutic dose.
Start at one cup of green tea or echinacea a day, and work up to 3 times that. See how you do and let your body adjust for a few days or a week. Then go up to 4 times that original dose. Give this a month or six weeks (your call) and taper off again if you want to.
Drink up 🙂
For lemon or lime water, melon and melon juice, and of course seltzer, you can drink as much as you like, as long as the citrus is well-diluted and doesn’t give you any trouble.
Citric acid and lemon or lime are best used with plenty of water. Using an intense concentration can irritate the stomach. (These also help prevent kidney stones, btw.)
Just like the artichoke/dandelion/milk thistle seed — check echinacea and citric acid with your pharmacist before using them.
If it’s okay to use echinacea with your other meds, then remember to either go off it after 6-8 weeks total, or, if you find you need to stay on it to keep the channels flowing, then remember to take a week off every month. Your body needs a break in order to keep responding to it. Echincacea is not for ongoing use unless you’re being followed by a good herbalist who’s comfortable with your complexity. (If getting the Lyrica out of your system is the only thing you need it for, then one round like this should do.)
Or you could just…
As I look back over this incredible screed, the simplest thing might be to find a nice herbal “detox tea” and start with one a day, go up to 4 a day, and leave all these details to the nerds!
I hope you can get clear of the Lyrica and find the right pharmaceutical/dietary/physical/mental support for you.
Shifting to a different med for neuro pain:
The mixed-SNRI class of new meds has had the best statistical results of anything so far tried, according to the first few years of studies. Mine saved my life (Savella) — it helped that I had a fibromyalgia diagnosis, and Savella was developed and tested on fibro, so insurance would cover it. It cuts my fibro pain by 90% but it also cuts the CRPS pain by almost as much.
All of the so-called “anti-depressant” classes have been found to be statistically useful in treating neuro pain. Why? Because what they really do is stabilize the messenger molecules.
The most profitable market for this is depression, but our central pain means that stabilizing the messenger molecules of neurogenic pain (regardless of emotional pain) means that we hurt less and function better.
Tricyclics (also good for sleep) and some SSRIs have had results that, statistically, are about as good as Lyrica. The real breakout med for long-term neuro stabilization for pain and dysautonomia is the new mixed-SNRI category, though.
There are also meds in other categories, such as bisphosphonates (again, take care of your liver and kidneys) and a class of heart meds called statins. Low-dose naltrexone and ketamine infusions are other options from the anesthesiology side. They usually require qualified specialty care to try, especially the ketamine.
If pain is localized (say, to a foot or a shoulder), then topical treatments can be terrific. Voltaren and Lidocaine patches are a great help to many. Compounding pharmacies can make up special concoctions tailored to your specific needs, containing any of the meds mentioned in the last few paragraphs.
I’ve used the word “statistically” a lot here. That’s because scientific method only tells us what the general trend for a group of people is. Statistics mean nothing in the case of the individual. What matters in the clinical setting — that is, what matters in the lives of individual patients — IS the individual. Therefore, the medical science is only a guideline, telling doctors what to start with and where to go from there.
We are all guinea pigs, because the subtle and comprehensive nature of the nervous system, and the way longstanding CRPS and other central pain diseases disrupt it, means that the only way we’ll know what works for us is to try things and see.
Your doc should take a deep breath, take a good look at your whole picture, and work with you to figure out what works for you.
Please be clear that THERE IS A WAY FORWARD. I’m certain of that. It’s just a question of finding the right way for you.
Best wishes and I hope you get a good solution soon!
To cut a long story short, I wound up with insufficient medication before my next pain doc appointment, and had to cobble together my full dose by using 3 smaller-dose tablets. Periodically over the last month, I’ve been peering quizzically into my bottle and wondering if all those little pills were going to last long enough.
Late last week, I finally had few enough that I could count them. (Due to perceptual issues, looking at a lot of little identical objects makes my eyes swivel, and I can’t keep track of them, even if I pull them out a few at a time. They appear to dance and swim without any help.)
Well, I had a problem. I couldn’t parse what to do about it because I didn’t know who to ask. My pain doc had been a bit more high-handed than usual at my last appointment, so I didn’t expect sympathy there, especially as it implied his math was wrong. I knew my GP would feel understandably uncomfortable prescribing a med he didn’t know well and didn’t normally use, which was normally prescribed by a high-flying specialist in a narrow discipline. That’s a lousy position to put a GP in.
So, regardless of the record heat and shocking floods elsewhere, New England has been cooler than usual, perpetually cloudy, with the Spring rain pattern (3 days and nights of constant rain, one and a half days of sun, a day or two of mostly clouds, 3 days and nights of constant rain, rinse and repeat.) This does tie in — really.
The reason it ties in is because summer gives me my recovery time, which involves sun and warmth and outdoor activity. 3 months of sun, warmth, and outdoor activity is what makes me strong enough to endure a New England winter.
It was so gloomy and chilly this summer, we dug up the money to go to California to recharge our bodies’ batteries. That didn’t go according to plan at all. As some of you know, I had viral meningitis from the day after we landed to 2 days before we left.
So, not much recovery, just a whole heaping helping of extra damage to recover from!
Then, of course, I had a relapse 10 days later, just in case I was getting too perky.
This summer has left me with a brain that’s just not up to par. So, rather than doing my usual thing of targeting the issue and parsing its components and figuring out what solution solves most of the elements, I … froze.
I started cutting the third of the 3 little pills in half, and taking two and a half, so I could buy a little time to think. Since that works out to my normal summertime dose, I didn’t question it much. It occurred to me, just as I’m writing this, that it has really crippled my ability to think, so that was not my usual problem-solving level of skill. Sigh.
I honestly can’t remember how I wound up on the phone with my doctor’s office on Friday. Wait, after 5 minutes’ cogitation, I do: I hadn’t heard from referrals my primary doc was supposed to have written 2 weeks before. Usually right on top of things, he had documented that he intended to make the referrals, but forgotten to enter the orders to do so.
The compassionate office lady asked how I was, and it wasn’t until then that I said, “Actually, I’m kind of in a bind,” and explained about the meds. To my complete lack of surprise, given how things have been going, it turns out my primary doc is on vacation this coming week. She left a note for whoever’s covering for him.
Since then, of course, I’ve been trying to work out whether I should call during the weekend, when coverage is even weirder and less accountable, or wait until Tuesday and the first day of business this week, and try to coherently answer the question of why I didn’t call sooner, and hope and plead to get my meds from someone who doesn’t know me and is working too hard to feel for one more sad case.
So … I’m froze.
Meanwhile, my feelings and my disease-driven propensity to worry paralyzingly, are all honed to a ridiculous edge. Once my pills get past the cannon-ball feeling in my stomach (almost past the half hour mark; 15 minutes to go) I’m going to do an hour of meditation, which I expect to roughly track the pattern of the meditation I did during the meningitis episode: 20 minutes of pure inward flail, breathing quietly while my mind and emotions just went off like a carton of firecrackers spilled on a brush fire; then, once that calmed down, my thoughts chased each other like frantic squirrels for another 20, not slowing appreciably until the last 2 or 3 minutes; then 10 minutes of one or two issues or ideas holding fairly still, allowing me to turn it over until it’s transformed into something peaceful by the pure attention; and then the rest, finally, gradually, moving into a pure and floating calm.
They say that one should meditate for an hour every day. If you don’t have the time for that, make it two hours. I hold this as a constant goal. Sadly for me, I can normally only push myself to sit down and shut up like that when things are so bad all I can think to do otherwise is scream.
I need to work on that.
This was going to be the year I learned to meditate and do t’ai chi pretty much daily, no matter what level of peace and calm there was in my life. I’m embarrassed that, even at my age, I still seem to need some chaos to let me bring enough pressure to bear on myself that I’ll do these key self-care activities at all.
Something to mull over in the contemplation stage of some meditation!
Remapping and the primitive brain are key concepts that come up often for people with chronic pain — though we don’t always know it. These underlie some treatment strategies that seem, at on the surface, anything from absurd to cruel from the perspective of the stressed patient. They also underlie a couple of those chronic misunderstandings between medical people and non-medical people, which are especially painful when the non-medical person is a chronic pain patient. I hope this will go some way towards creating better communication between palliative-care doctors and chronic-pain patients.
First, I’ll go over a few fundamentals. Naturally, I’ll translate the dense stuff into Plain English.
Basic brain structure
The brain has sections which have different jobs, but communicate intensely with the others. It’s impossible to view them either as entirely separate or entirely connected; they’re simultaneously distinct, and inter-linked.
Providers, I’m going to oversimplify. Be warned.
The hindbrain, or medulla and cerebellum, manage the business of pulse, respirations, and the kind of moment-by-moment activities of survival we don’t even think about. The cerebellum and cerebrum take in information about our environment, check for reflex response, compare it to learned and instinctual information and decide what to do about it. The cerebral cortex is where we start thinking we’re in human territory, because this is where much of our actual thinking takes place, linked into deeper structures in order to turn into words and deeds. Our thinking brain is very much in the minority and, whether it knows it or not, conscious thinking only happens on top of a great deal of unthinking response which has already happened.
That’s the key, right there. The thinking brain is never isolated, even though we sometimes act as if it can operate alone.
Think about the meaning of the word “objective”, then think about how that can possibly apply to thoughts and perceptions channeled by a mind that’s driven by unackowledged forces at inaccessible levels. Objectivity is only an aspiration, not a rational goal, but that’s too often forgotten or ignored.
When scientists forget this, it explains a lot about conventional medicine’s blind spots, certain doctor-patient miscommunications, and many crucial limitations of scientific method.
When the rest of us forget it, we’re already reacting on the basis of the primitive brain’s unthinking push. We lose our capacity for any objectivity right when we need it most.
The central nervous system (CNS) is “plastic”, a term in Medical Jargon which means that it morphs and changes to meet the requirements of whatever the CNS thinks is going on.
To be more precise, the CNS doesn’t change the shape of its cord, lumps, and lines, it changes the tasks (and pertinent chemistry) of sections of cord, lump, or line, when ongoing survival seems to call for it. The term for that morphing of purpose and chemistry is “remapping.”
During fetal and childhood development, the brain and spinal cord develop into certain chunks, and those chunks learn to store and pass along information and signal responses in predictable ways. Sounds, colors, sensations, Mom’s face, Dad’s scent, sibling’s voices — these all get processed in, stored for future reference and retrieval. The information finds its home in the CNS while the brain and spine build roads and rails to carry the signals on.
In Medical Jargon, this arrangement of storage and signaling is called the brain map. Unlike most other disciplines, in neurology, the map IS the territory, and mostly it works pretty well.
Therefore, a healthy brain has a normal map of the body, including how it signals normal needs and how to meet them. As the body, signals, and needs all change, the map gets re-drawn, and that’s how the brain and spinal cord get remapped.
This is appropriate in the developing years and in times of great change when we need to adapt. Brain plasticity is important and exists for good reason. However, in chronic pain, especially with central sensitization, it goes overboard.
Thanks to the remapping that happens with chronic pain, the pain signals can’t stop because the chemicals that carry the signals change, so the old pathways aren’t even accessible to them. You know how trains can’t use roads, and cars can’t use railroad tracks? It’s a bit like that. Your spinal cord/brain has blacktop where it used to have rails.
In central sensitization, it means that normal signals — excitement, touch, sound, lights — can get processed, not just as emotions (wow!) or touch (hey!) or sound (oh!) or light (ah!) signals, but as pain signals (ow!), because the brain’s remapping means the normal ways of processing feelings, sensations, etc., have been partly overwritten — sometimes completely erased. It’s all pain, showing up right there in the spine and brain; pure, gruesome pain. It doesn’t come from anywhere in particular; it’s just the essence of pure pain.
Yeah, it sucks.
This is why people with chronic pain and central sensitization get so quickly overwhelmed by things that used to be fun, like music, parties, dancing, socializing, and so on. The inputs, however delightful themselves, just get shunted into the “pain” tracks right in the central nervous system.
It’s not about not wanting to have fun! It’s about not being able to bear the unnaturally high price, which is so high the fun is usually lost.
When a normal person sees one of us at a party or other event, it would be totally appropriate for them to fall to their knees in admiration and gratitude, because our level of dedication to the events we do attend is truly special.
Not that anyone ever does, nor are they expected to … but it would be perfectly appropriate if they did 🙂
The primitive brain’s role in all this
The primitive brain is one of those terms that changes meaning depending on who’s using it. So, to be clear, I use it here to mean the parts of the brain that don’t use words a lot, and that underlie all the parts that do. Very simple.
Since pain is a survival function, it has deep roots in the primitive brain. This is kind of too bad for us, because once we understand the concept of remapping, we want to learn how to re-remap, so we can push our brains back closer to normal. The catch is, this is all rather intellectual, and pushing back on pain’s remapping means that the re-remapping needs to target a lot of primitive brain, which is primal, not intellectual. The approaches that have been developed reflect this. They’re hard to keep up with, because they don’t always appeal to our higher personality characteristics. (That is, they can be repetitious, trivial-seeming, and dull.)
Let’s take a look at the underlying concepts here, so the ways we communicate with the primitive brain make more sense.
The primitive brain relies heavily on nonverbal cues. Take a look a few paragraphs back, where I was discussing how sensory signals turn into pain. I’ll repeat the section here:
…emotions (wow!) or touch (hey!) or sound (oh!) or light (ah!) signals, but as pain signals (ow!)…
See what I did there? For each type of signal, I made a pertinent sound, and drew attention to that sound by adding an exclamation point. I was totally talking to your primitive brain, there.
Most of us find we talk more easily with people who don’t have arms crossed or brows lowered. That’s the primitive brain noticing the lack of withdrawn or threatening cues. Body language is 90% of visible communication, just as tone is 90% of audible communication, and it’s rarely noticed by the cortex at all — it’s primitive brain stuff, and humans respond as reflexively as Pavlov’s dogs.
Color (for those who can see it) sends powerful signals to the primitive brain.
Interior decorators may suggest painting the marital bedroom red, because red makes the primitive brain tend to feel passions more strongly and this can improve the sex life.
Some prisons use grey (which is depressing, and slows people down) or pink (which tends to promote calm. The nice theory is, it’s the first color we saw, as light penetrated mother’s stomach wall while we were in the womb. The mean-spirited theory is, it makes grown men feel like little girls; rather than learning to control their impulses, they get emotionally emasculated. Not corrective at all.)
Here’s a classic example of good intentions: In 1991, the administrators at my hospital decided to paint the walls of our HIV unit yellow, in a conscious effort to cheer the environment and counteract the depressing nature of early-90’s existence with HIV. They should have involved caregivers in the choice of shade… after only a year, the one they chose looked just like the serous fluid oozing from a skin ulcer. Still, they meant well.
Movement is powerful. The movement we see around us and what we do, ourselves, gets plugged in very deep indeed. Movement involves the most primitive parts of our brains. Because so many of us become limited in our movement due to central pain disease, what movements we do make, and even observe, become even more important, more concentrated.
Very primitive indeed. That’s why these things can be so effective.
Putting several primitive-brain cues together: food, pills
Eating is comforting to the central nervous system for all sorts of reasons, one of which is that taking something, putting it in your mouth, and swallowing, is something we first experienced before we were even born. Also, eating good foods and taking effective medicines makes us more capable and less miserable, because of what happens afterwards to our chemistry — a powerful reinforcement of that primal reward.
The sensation of feeling better is even more compelling when being alive is unbearable at baseline.
Freud went to town over this instinctual action, but he wasn’t completely wrong.
Putting hand to mouth and swallowing is one of the most powerful primitive-brain signals we habitually engage in. (Realizing this makes me think about how I eat, fidget, and generally do hand-mouth things. I’ll be less mindless about those actions — at least for awhile — and try to give my primitive brain its due.)
This is where we get to one of the things that seems so cruel from the patient’s point of view, but makes perfect sense to the doctor seeing it from the brain’s point of view. I didn’t really get it until mulling over my recent visit, so those of you who’ve seen me saying something different before, I apologize for not having thought it through. They might not be wrong!
This was not easy to write, but for the reader, who doesn’t know what’s coming until you read it, it could be triggering. I want to insert a reminder to my fellow painiacs, for whom black-and-white thinking is very easy to fall into… Take a breath, let it out slowly, and keep in mind that there are no absolutes here, just lots of context and a few guidelines. This can be pretty tough material, but you are way, way tougher.
What we can do about this
Now that we have some idea just how powerful the primitive brain is, how easily it remaps itself once central sensitization takes hold, and how powerful the act of taking and swallowing things that make you feel better is …
Ideally, think long term
We can see why, when doctors don’t want us to ramp up our daily meds when the pain gets worse or to become too regular about taking our breakthrough meds, these things worry them. It’s too easy to program the primitive brain in pain. They see it as powerful signaling that sets the brain up for needing an outside chemical push whenever it starts acting up.
Pain patients come in all sorts, but can broadly be divided into the passive care recipients and active care participants. The latter tend to have much better prognoses and quality of life, but the nature of bitter central pain tends to suck everyone down into the former approach now and then.
Thus, the doctor has no way of knowing if the patient in front of them is currently able to be an active participant and do their disciplines first, or if they’re sufficiently overwhelmed and disabled to just reach for a pill (ow! — mmm!).
None of us is immune from mental exhaustion. However appalling their terminology may be, good docs’ instincts are founded on caring for our greater good, even when we can’t think that far ahead.
Unlike acute pain, life with chronic pain requires us to take more than one approach at the same time. (Insurance doesn’t much respect this fact, which makes it all the harder to manage!) We aren’t expected to recover, unlike those lucky so-and-so’s with ordinary acute pain, so we have to think in terms of having a life while thinking ahead to being able to live the rest of our lives in a bearable state.
This means that all of those primitive-brain approaches and re-remapping tools — eating well, keeping moving, mental rehearsal, coloring, internal arts like meditation and yoga — PLUS individually tailored pharmaceutical therapy and occasional procedures — have to be part of the picture.
Doctors can help us, but they can’t save us; we have to do as much re-remapping as possible, and contribute as little as possible to the pain’s remapping. We aren’t talking about a couple of days or even a couple of years; we have to be able to keep life as manageable as possible for however many years or decades we have left.
The painiac’s barriers to success
Considering how devastating it is to think that we’ll most likely be dealing with this all our lives, our own brain-care requires us not to think about that, because so much perfectly rational despair is waiting when we do.
It requires thinking years ahead on every aspect of our treatment. This is more than usually hard for us to do, becuase thinking too much about this aspect of our future is so counterproductive in other ways.
Nobody’s brains are set up to stay detached and rational when our nerves are running riot with pain signals and our bodies are just exhausted with it. It’s okay if this seems insanely hard, because it IS insanely hard.
This is not a normal situation! We’re rational people stuck in a complex web of relentless, irrational challenges, and we are obliged to prioritize our current survival. Just do your best! It’s all you can do!
Personally, some days, getting out of bed and doing my tea-snack-pills routine is all I can manage, and I have to be glad of that. (Things could be worse.) I realize that, good as my disciplines (and consequently my perspective) are, they aren’t always up to the job of keeping this mile-high view. Also, I’m a brain-hurt human, and I can’t necessarily keep track of all the myriad things I’m supposed to do.
This is why I seek out and travel to such astoundingly good doctors. I need them to DO what I can’t, as well as to KNOW what I don’t.
Taking more pills and feeling better is powerful retraining. Yet… There are only so many pills in the world, only so many chemical boosts that can do any good at all.
What a set-up!
Built-in pain control and building up tools
On the other hand, remember that we have other tools available to us. For one thing, the brain/spine complex has many ways of managing pain and distress which can be leveraged by a conscious and determined owner of that system. These ways, from the descending inhibitory pathway to oxytocin, endocannabinoids, and endogenous opioids, can be consciously operated and can be nudged by what we take in and do. (Go ahead and google the heck out of those terms. I don’t have enough spoons left to dig up the best links.)
They take practice to master. Not surprisingly, developing these skills can be repetitious, trivial-seeming, and dull.
Just like building a muscle, it takes work to build — rebuild — and keep on building — the ability to counter pain in ways that use what your body has already got.
Letting the primitive brain slide into taking a pill for increased pain as Plan A or B puts the kybosh on those other methods. They wither, like unused muscles.
The pain patient is left with fewer and fewer alternatives, as the years go on.
Yeah, that REALLY sucks.
The one member of the doctor-patient team who isn’t currently losing their mind to disabling pain has the perspective to think ahead, and to realize that NOT retraining the brain to go with “pill as Plan A” is crucial to ongoing survival.
They aren’t always tactful about it, of course (!). They learned it in terms of Pavlov’s dog, and nobody likes being compared to a slobbering animal, so the usual explanation is deeply offensive. I hope they’ll figure that out and start using terms like “primitive brain” and “primal reflexes” and so forth, rather than “operant conditioning”, let alone “Pavlov’s dog.” Sigh.
This conflict of ongoing needs and current distress often winds up painting the doctor-patient team into a corner: the patient’s desperation may lead them to remap their brain to need something it can no longer make for itself, while the doc is not able to communicate real concerns effectively (between their own language gap and the patient’s neurological chaos) but winds up patronizing the patient to a standstill.
Where to go from here
So, when your doc says, “Don’t pill up,” this is why. They’re worried sick that you might be reaching for pills as the easiest fix — just like most normal people do. Just as they do, when they’ve got an infection or allergies. These days, reaching for a pill to solve a medical problem is the normal thing to do. That’s why it’s a natural assumption for them to make.
I know my readers are a lot better informed and more skilled at self-care than most people. So, if you find yourself having this kind of conversation with your doctor, pause a moment, take a breath, exhale slowly, and explain:
You understand the concern about screwing up your body’s reward-signaling,
You’d like them to know you’ve been using your alternate methods for days/weeks/whatever, and
The pills were the last ditch effort.
That’s exactly what breakthrough meds and med increases are for — last-ditch efforts when our home remedies and personal strategies can no longer meet our minimal requirements.
You may have to say this every time. (I do.) That’s okay; it shows they think of your survival before they remember their manners. These docs are seriously worried that you’ll wind up beyond the ability of modern medicine to do anything for you. (We want docs who worry for us!)
Some of us wind up there anyway, as we’re all well aware from our networks. Our best bet (though there are no guarantees) is to explore, discover, and refine the set of non-pharmaceutical management techniques that offer each of us, individually, the most manageable level of trouble/expense which give us the best results. We’re all neurologically different, so we have to develop our “toolkits” on the basis of what works for ourselves.
Suzanne Stewart (among others) at National Pain Report, intelligence diligently applied;
For the multiply allergic or drug-problematic, Taming the Beast, out of Canada, for more on home management and strategies that are as nontoxic as possible, discussed as pleasantly as possible.
These blogs all discuss strategies that are compatible — or at least not incompatible — with current science.
In the end, what tools matter to you is what tools work for you. You don’t owe anyone any explanations for those. It’s your body, your life, and you who have to face the consequences of every strategy used in your case. Might as well own it.
Other “ancillary” or “alternative” therapies
Once you include strategies and therapies outside your doctor’s bailiwick, it’s not fair to ask the doctor if they think it will help. They’re already doing what they think will help. Conventional mainstream medicine names these techniques with terms that specifically put them off to the side, because that’s where they believe these things belong, so it’s normal and appropriate for conventional practitioners to have a bit of trouble making sense of them.
For the pain patient, these strategies are likely to take more time and attention than conventional care, but only because they are so necessary to living with central disruption and pain.
As long as these therapies don’t disrupt or interfere with your medical care, then the physician’s opinion is not relevant; your experience with that therapy is.
This brings us to a form of intellectual integrity which many well-educated people have trouble with. Ready? Here goes:
Others’ belief systems are not relevant to your personal experience of less pain and greater function.
Even if the “others” are care providers, and even if their belief systems are based on the current state of our limited and ever-changing model of science.
The only proof we need, here at the sharp end of reality, is what kind of good something does, and what kind of bad it doesn’t do, for the only body we’re in.
If it helps, doesn’t hurt, and you can access it, success! It’s in your toolkit!
Below is a short table of “alternative” therapies and modalities I’ve used with success, with annotations about what I learned about how to make the most of my benefit from them. (With apologies for the weird formatting.)
Essential. Our brains are the most susceptible organ in the body to deficits. Air, food, and water underlie everything our brains do. Immune activity in the gut is becoming a hot issue for study, as the results can be multi-system and devastating. Nutrition is the first and most important step, in my view, to managing a life with serious illness. Eliminating or reducing immune triggers, maximizing nutrition within your practical limits, and being able to absorb and process your food, are key to getting your body to work right again.
As those of you who’ve checked the science know, nerves can’t work without mitochondria, and mitochondria can’t work without antioxidants. The only known preventive strategy for CRPS is vitamin C in frequent small doses for 2 weeks before surgery and 3 months after surgery or trauma. Vitamin C! So yes, nutrition is the base of everything. This also means, beware! Nutrition can interact and have side effects. Brassicas and soy can deplete the thyroid. Co-Q 10 interacts with Lexapro, a common neurochemical modulator used for central pain and depression. Check with your pharmacist.
The practitioner needs long experience to avoid accidental damage, plus specific training and experience with central sensitization. (I use LAc’s with over 20 years’ experience.) Patient needs realistic expectations and a pragmatic list of attainable goals: anxiety control, sleep/wake improvement, temp/sweat stabilization, digestive support, wound healing, whatever your practical concerns are.
Acupuncture is extremely sophisticated. Its methodological groundwork was being laid before my European ancestors even figured out where babies came from. Because of that sophistication, experience counts, because some of what they evaluate is very subtle. Inappropriate acupuncture can make local or central pain worse, so do be mindful and pay attention to the care you’re getting.
Can be GREAT for pain. It’s more “tunable” than many practitioners realize. If you have dysautonomia or suspect any other form of central disruption/transformation/sensitization, be sure to tell them: “Use SHK, and lots of it. CKR can be bad for central nervous system disruption.” Their likely reply is, “But Reiki goes where it’s needed; it can’t hurt.” The response to that is, “Reiki gets attracted by need. However, more than a touch of CKR can be like warming hands by pouring burning fuel on them. SHK is more stabilizing, and that’s what’s effective. CKR is great for a final ‘coat’ afterwards, but not for the main treatment.” (CKR and SHK are different “flavors” or “types” of Reiki energy.) I figured this out with the assistance of other Reiki 2 practitioners and other centrally sensitized volunteers. It’s absolutely consistent, both for in-person and distance work.
Level matters. A Level 1 practitioner normally needs to work on only themselves. If you have Level 1, consider working towards Level 2, as the rewards can be considerable. Level 2, 3, and Master practitioners can send transformative Reiki. Many massage therapists are also Reiki practitioners.
Therapeutic Touch ™
Came out of the nursing profession from a nurse-scientist who got some initial studies funded. Blood tests were so good it was unreal. Usually done by RNs. Usually helpful with pain, digestive problems, mobility, and wound healing.
May be available in-hospital, sometimes through private practice. Sometimes massage therapists get cross-certified in TT.
Be prepared for some rudeness if you tell people you use this. Its principles are founded on quantum physics (something called “signal propagation”) and conventional medicine still depends on Newtonian physics, which is 600 years old; predictable, but limited. Anyway, I strongly recommend getting competent, qualified help in working out what works for you. Hypericum perforatum is widely used for nerve pain, but it can go either way for us. It used to help me significantly but now my body flips it about half the time and it makes the pain dig in, so I no longer use it. Ignatia amara can help calm that emotional storm that comes with too much stimulation, surprise, or pain. It also eases my bursts of panic. I get great results consistently. I use Arnica pills for soft tissue trauma (which, for me, is a body-wide event), and heal in 1/4 the time with about 1/6 the pain of what happens when I don’t! Many have great results from Rescue Remedy ™; for me, it just calms my mood, but for my housemate, it brings her blood pressure down from the sky and cuts her pain. We’re all different.
As with Reiki, some say that “it can’t hurt”, but that isn’t correct for the centrally sensitized. Keeping logs of how you respond to each remedy is an excellent idea. Your diligence can result in a handful of outstanding remedies that help you enormously and very quickly.
These are the precursors to conventional mainstream medicine. Therefore, they’re a double-edged sword. Assume that everything interacts with something in conventional medicine (except possibly chamomile); know your interactions for what you use. Everything has side effects, although, with that said, whole herbs tend to buffer their own bad effects better than purified extracts. Freshness matters; potency varies. This means that, if you’re interested in the potentially vast bouquet of beneficial herbal support available, either start when you’re young and healthy with a great teacher (as I did) or find a very experienced practitioner with experience treating central sensitization.
Expect to do a lot of homework researching brands and regions and preparations, in your own defense. The market is huge and very aggressive. You are your own guinea pig, so keep track of effects, doses, potency (which you’ll have to figure by color, scent, and taste) if you’re wildcrafting or growing your own. Be wise with your herbs, and they can reward you.
Do your due diligence
As the blunt hints in that table suggest, there is no such thing as a free ride or a guaranteed fix — not even any such thing as “It can’t hurt you!”, especially when central sensitization is part of the picture.
Given all the side effects of our meds, the mistakes by highly qualified physicians, and the errors in surgery, not to mention the rank company of practitioners like Scott Reuben who get rich by urinating in the well of science, these characteristics of not being harmless don’t distinguish “alternative” methods from “conventional” medicine at all, from the patient’s point of view. It’s all risk, and nobody bears it as much as we do.
The obvious corollary is that there are highly qualified practitioners of these therapies too. There’s no substitute for good training and lots of experience, so look for those who’ve studied their disciplines long and hard, and remain enthusiastic about their field. These are the ones who can provide the best help and guidance.
Another handy fact is that there is a lot more information available on these therapies, at a much greater level of detail, to the determined pain patient. We don’t need medical school access or memberships costing thousands we don’t have, to access articles and reports (not to mention extensive fluff and pretty pictures) about physiotherapy, massage, TT, acupuncture, and any herb you care to name. Good resources for checking interactions with medication and devices are there with a little digging. The vocabulary and style is far more approachable. A bit of common sense and occasionally a friendly nudge from a cohort can help us screen out most of the rubbish.
After that, it’s back to trial and re-trial and lots of notes, the reality of patient-hood, which is based on empiricism out of necessity: WHATEVER WORKS FOR YOU IS WHAT MATTERS, NOT WHAT ANYONE BELIEVES “SHOULD” WORK.
As with medicine and surgery, the final sanity check and the final decision is up to you, the patient. It’s always up to you.
May our brains and spinal cords become more stable, less reactive, and ever closer to normal!
I switched to a new insurance company that might provide dental care. I haven’t tried them on that yet, but I will. It’s on the agenda for this year.
They want to pre-authorize my main neurological med, Savella. This is the main med that keeps my pain under some kind of control most of the time. If it weren’t for Savella, I’d simply not have survived the past 5 years.
Somehow, the pre-auth requirement has thrown my pain specialist into a tailspin. He wrote a prescription (although I had refills) and mailed it to me, then asked me to come in to see him (2-1/2 hour drive, involving an overnight stay to be there in the morning, which is when his office hours are) in order to discuss this, before he’ll initiate the pre-auth paperwork.
I could get testy about that. It would be so easy.
What I did was refer, by date, to the first visit, when we discussed that first for 10 minutes. I guess his notes from that got lost.
This is where I stay off the computer for a day while I calm down, remind myself that it would not actually be in his best interests to throw me into a bottomless lake of fire, and it would probably not be in my best interests to beat him to it and kill him first.
When you have a brutal pain disease, and you have a med that works enough to let you have a life beyond fighting for the next breath and waiting for the lack of food and crazy stress hormones to kill you, and there’s a situation that threatens to take it away, the consequences of losing the med mean that life will descend into a level of hellishness that most people can’t even imagine. Thus, those of us who’ve found a med that works for us, enough to let us eat and move and think and speak — we get pretty intense at the prospect of having that med taken away.
This is not addiction. It never was. It’s true and valid need. Big fat difference.
Funny how it’s easier to believe when we’re not talking about narcotics, isn’t it?
> If you’re serious about managing the narcotic disaster in this country, you have to let yourself remember that both addicts and painiacs NEED TO BE PATIENTS. They both need CARE. Neither they, nor their doctors, nor their communities, are served by being turned into CRIMINALS.
> REHAB WORKS, when properly funded and designed. THAT is how you get addicts off of contraband drugs.
> PAIN MEDS WORK, when appropriately prescribed and used. THAT is how you keep pain-patients functioning as well as their diseases permit.
> There is some logistical overlap at times, but ADDICTION AND PAIN TREATMENT ARE NOT THE SAME THING.
> However, BOTH NEED TO BE MANAGED BY CLINICIANS, NOT POLITICIANS!
Okay, stepping off that soapbox. Feel free to copy/paste the whole blockquote as much as you like.
So, anyway, I’ve calmed down about my doc’s curious response to doing a pre-auth on my longstanding pain med.
This is really important: from here on, I’m talking about MY ANXIETY, not MY PHYSICIAN’S REALITY. This is pretty normal and natural, and I’m leaving it in as a straightforward demonstration of what my brutally nervous brain can do to in the grip of PTSD from decades of questionable care. So, here’s the anxiety-driven, defense-at-any-cost response. (For more on the reality, check my future posts on his doctoring.)
I remembered he’s a geek. More than that — he’s an ubergeeknerdyguy who’s been a high-end specialist for a very long time.
Geeks are brilliant in their particular slice of the world, but can be surprisingly insecure and nervous about stepping outside it. Also, sudden changes can be surprisingly disorienting to them. (Those of us with ANS problems can sympathize.)
Things that might rattle an ubergeeknerdyguy about this and set off mental alarm bells:
My med was covered before, but now it needs pre-auth. Why? /dingdingding!/
My diagnosis was wrong, and it’s possible that my treatment will change, but we don’t yet have enough info to decide what’s next. Feels like change is coming upon us too soon! Not enough information! /dingdingding!/
Winter. Nobody over 35 is at their best here in the winter. /dingdingding!/
Obviously, to those of us who don’t inhabit the intellectual stratosphere, the first 2 issues are pretty straightforward (1: Cuz American insurance is funny like that. 2: Doesn’t matter — stay the course until there’s reason to change) and the 3rd is just life.
To an ubergeeknerdyguy who’s accustomed to controlling outcomes that nobody else can bear to deal with, it’s too much uncertainty to handle at long distance.
So, I’m getting my documentation ready:
I’ve got another copy of the letter from the ins. co. explaining they just want pre-auth.
I’ve got the current formulary showing that Savella is covered.
I’ve updated my supplement matrix showing the changes for the winter, which does 2 things: shows I’m really working on this “being functional” thing, and that I’m taking my chemistry seriously, not being passive and expecting him to do all the work.
In fact, the last point is so useful, I’m going to link my matrix here for anyone to crib from:
Now my secrets are out! 🙂 You can now see exactly which brands I use and what I find that each thing does for me. (And, if you count up the number of capsules and pills this makes, you also know why it can take me over half an hour to get my pills down!)
The first column shows changes (represented by a delta sign at the top). Docs LOVE being able to see at a glance what’s new and different.
Blank spaces are shaded out. This makes it obvious nothing’s intended to be there. (Common sense is not the same as intelligence, remember. Be as clear as possible.)
I put notes at the bottom putting it all in context.
My neuro supplements went down when I got my antioxidants dialed in to reflect the results of my blood tests. In other words, balancing my antioxidants really helped my brain!
My neuro supplements, along with everything else, have gone up to mitigate the brutal effects of cold and snowy winter.
This is not the time to make changes. Having said that, I’m not opposed to changes — just not now. (It’s good to explain, courteously and clearly, what your boundaries are around treatment.)
Detailing those changes tells the doc that I really do pay attention to what I’m taking in. I’m not a faddist; I’m diligent and determined to manage this as well as I can. Just from this one document alone, that’s reasonably obvious. Displaying this characteristic (or set of entwined characteristics) helps my doctors take me more seriously.
The real fun of this symptom complex: trying to keep others taking me seriously even when I realize I’m in such a panic my brain explodes. Woot!
This is from one of my Isypedia-type replies to someone with a dreadful case of clostridium difficile (commonly known as c.diff) who had been told to use antibacterial soap to wash.
NB: This is not an opportunity to argue about antibacterial soap, but a sharing of experience from someone who was on the front lines of the “soap revolution” over a quarter of a century ago.
A word from an old nurse on this question, one with leaky gut, bouts of multi-system candidiasis, and assorted other gut issues, as well as c. diff …
About c. diff
C. diff is common in hospitals and is an opportunistic infection. (Doctors carry it from bed to bed on their white coats, and few of them even wash the darn things more than once a month. This is disgusting.) Once it’s in you, it hibernates, and comes out in flares periodically, usually when you’re stressed out or when your immune system is down. There’s no question of curing it, but of suppressing it and managing outbreaks.
Healthy gut flora are the first, best line of defense. They simply crowd it out and leave no room for it to grow. A normally healthy person might do fine with eating yogurt, but those of us with chronic or profound illnesses usually can’t meet their needs this way. We need the big guns because our gut flora are likely to be very weak,very few, or both.
There are some great probiotics out there. Good brands are pretty numerous. They include Jarrow, Garden of Life/RAW Vitamin Code (my personal favorite), and Ortho Molecular Products. I use the RAW Vitamin Code 5-day Intensive product for 2 weeks at a time, when I need to reboot my gut. Recently, I had candidiasis and c.diff flare up simultaneously, so I’m using the Ortho Molecular Pro Biotic 225 (tastes weird, so I mix with juice to cut the funk) for 2 weeks and then I’ll do a round of the RAW Intensive (which has a much broader spectrum of organisms, something my body really needs for maintenance — the longer a person has CRPS, the fewer gut species that person has, oddly enough) for 10 days or so.
I get these products on Amazon or at Vitacost.com, where they can usually be found at near-wholesale prices.
About the social and practical aspects of soap
Men have trouble with soap. (I’ve had to teach males of every age to wash their hands for dressing changes or eye care, so yes, I can confirm it absolutely.)
It doesn’t mean they aren’t capable of using it well, any more than women are incapable of lifting weights; they just have to put a little more effort into it, but almost all of them are capable of becoming very capable.
No, really, it’s true. They can. They just have to put a bit more work into it.
Where possible, many men would much rather have a toxin or tool to do the cleaning job for them — hence sonic cleaners and autoclaves for equipment, and benzalkonium chloride or alcohol cleaners for the skin of male responders and providers.
These aren’t as good as soap and water. Notably, alcohol cleaners, which are widely used in hospitals and do kill many germs, don’t even touch c.diff — a peculiarly hospital-based pathogen.
These products are considered good enough, and are certainly a great deal better than nothing at all.
If men (at least, US men) have to use soap, though, it seems easier for them to think about if it’s a tool-ish sort of soap — Gojo (by every mechanic’s sink, next to a fossilized bar), Lava soap (which feels like dirt and has powdered rocks in it), or antibacterial soap (which sounds medical, and therefore like a specialized tool.)
That’s a lot of needless expense. Also, and more importantly for the purposes of this blog, it’s becoming clearer that there are toxicity issues with antibacterial soaps which affect men as much as women and children.
How to clean your skin so well at home, only a surgical scrub could be better
Whatever body part you’re washing, whether it’s hands or what the medical profession delicately refers to as the “peri area” (Latinists, look away from that) and what most Americans call “the crotch”, there is a very simple way to get as clean as you can, short of a surgical prep.
Here’s the magic:
20 seconds by the clock(you’d be amazed how long that really is) with regular hand or body soap,
On your hands, from nails to wrist; Between your legs, from front to back; In both cases, right through all the crevices and any wobbly bits,
Then rinsing well afterwards,
This process will get you as clean as, or cleaner than, any amount of antibacterial soap, without the side effects. That’s what the independent science says, over and over, plain and simple.
The problem is, of course, that most people (especially men) have trouble spending that much time with soap and water.
Personally, I do a quick pass with soap to get the worst of the stinkies off, and then do a second and sometimes a third pass, front to back. I do this every time I shower, and when I’m too sick to shower but can still stand up at the sink to wash. It adds up to 20 seconds, usually closer to 30. My nurse’s nose finds my sick-body smells distressing, so I like to clean them off completely.
When I’m really not up to washing well for at least 5 days out of the week, that’s when the troubles start. Usually, diet and hygiene keeps my gut content, but I recently got a virus and then a long pain-flare and that put me down for over a week of very little proper washing — plus, of course, diminished immunity. That’s probably what led to the multiple gut flares. (They’re much better now, thank you.)
Making the right choice for you
Bottom line is this… IF you can trust yourself to really clean yourself properly, which means 20 seconds of soap (in 1, 2, or 3 increments at a time, as long as it’s 20 seconds total), then ordinary, nontoxic soap is just fine.
If you can’t trust yourself to do that, then yes, you need the extra killing effect that the antibiotic soap can have on pathogens, and will have to risk the consequences.
For triclosan and its relatives, this includes muscle wasting, dose-dependent (the more you use it, the worse it gets); for most others, it includes moodiness, suppressed immunity, more skin issues, and all the stuff that goes with endocrine disruption — possible neurological issues like pins-&-needles and faulty neuro, endocrine, and hormonal responses. (You have to watch the medical science closely to find some of those things, because they rarely make it into the mainstream press. Bad for business.)
And that, ladies and germymen, is the lowdown on how to choose soap.
After breaking my own heart just before the holidays, and then lots of traveling and the sheer delight of swimming in the ocean of love I felt with my kin (lucky me!), and then coming back in once piece, and then a bumpy recovery period… my dopamine was pooped.
How do I know that? Simple. I lost touch with the usually easy-flowing sense of love for my nearest and dearest. I was not quite as interested in grabbing good moments to have some fun; I was drawn to sitting around, disaffected and lethargic. My mind was a bit fuzzy. It was pretty much impossible to control my impulses to buy things I didn’t need, but felt a need for right at the moment.
Dopamine (among other things) is used to make decisions, control impulses, get interested in things, be motivated, and feel the pull of love or other desires.
I experimented years ago with precursors to neurotransmitters, because I was having a hard time convincing doctors that addressing the neurochemical impact of the disease might lessen the neurological effects of the disease.
I know, crazy stuff. Such a weirdo.
I’m taking an SNRI which mostly does a good job, but I’ve been doing this long enough that I don’t want to crank up the meds as my first line of action. Meds are problematic, especially for me, so I keep them as a second or third line option, starting with less toxic options first.
I’ve learned that the meds need something to work on. Selective reuptake inhibitors basically affect the molecules that already exist; they can’t make new molecules of serotonin, or norepinephrine, or whatever; they can only push the ones that already exist to work harder.
I like to make sure my reuptake inhibitors have something to work on, rather than just squeezing the last of the juice out of what few molecules are there. I still trust my body to make the neurotransmitters if they have the raw materials, so I listen to my cravings and supplement accordingly, giving them the raw materials to make more neurotransmitters.
Craving starch and fat and sugar is a good indicator that I need more serotonin, so I add 5-HTP to give myself a solid, measured dose of serotonin precursor. Craving sugar and having protein quench the urge, is usually a good hint that I need more dopamine, so I take some nice clean d,l phenylalanine.
(Your mileage may vary, of course, but it turned out there was good, straightforward science behind these two simple self-checks.)
These are only two out of dozens of neurotransmitters, but they interrelate and often morph into each other sooner or later. So far, I’ve had good results with focusing on these two as the lynchpins of my neurochemical management.
Here’s a metaphor that parallels the relationship between neurotransmitter meds and neurotransmitter precursors. You can crank up the volume all you want, but if there’s nothing in the CD/MP3 player, most of what you’ll get is just noise. Precursors are the music media. Meds can be the volume control.
I stopped taking d,l phenylalanine a couple months ago because I was doing great and really wanted to reduce the number of capsules I have to choke down. For awhile, I thought things were fine, but I’m not sure they actually were… I made some very silly decisions.
Phenylalanine, found in processed (smoked or dried) meats and well-aged cheese, as well as in certain artificially-sweetened drinks, is a key precursor for the dopamine/norepinephrine set of neurotransmitters. It has been found to suppress pain at the spinal root, too. It’s used by some vets to help advanced arthritic pain in dogs.
My early experiments, when my neuro situation was getting bad, showed that 4 packets a day of that phenylalanine-rich artificial sweetener helped my mood and my pain noticeably. This persuaded my (slightly bemused) doctor to try me on SNRIs. Once I got onto the right SNRI, I’m happy to say I could get off the crazy chemical-sweetener version of the molecule. Suddenly the artificial sweetener stopped tasting good!
Anyway, to make a long story short (“Too late!”), I keep d,l phenylalanine on hand in case I need it for pain or brain. I started taking it a few days ago, in the morning, and I’m finally starting — starting! — to feel more human again. I started at a low-moderate dose, and gave it a few days to work its way in before reassessing.
I understand that many people shy away from these precursor supplements because medical conservatives don’t trust their patients to pay attention and notice what makes things better or what makes things worse. That’s often reasonable… when I was working as a nurse, 90% of my patients probably couldn’t tell if their feet were on fire without looking first. Most people are really dissociated from our bodies.
Moreover, pain patients have every reason to be! When you spend most of your time in some degree of agony, it takes nerve, practice, and stubbornness to check in on yourself and make note of what you find, in order to screen out or screen in things that might be harming and helping. I have to say, I have found it well worth the effort, overall.
Also, surprisingly, it makes the pain less oppressive to look it straight in the eye once in awhile and say, “I see you. I see exactly what, and where, you are. You don’t fool me. You are not my life. You are not my body or brain. You’re just something that gets in the way, and I can usually work around you to some degree.”
Now, here is the “caveat” part.
It is possible to over-crank your meds by cranking up the precursors; it is possible to generate too much serotonin or too much dopamine by taking too much in the way of purified precursors, and your meds will keep squeezing the most out of that excess. So yes, you need to be careful and pay attention if you’re going to try this. Don’t jump in blindly. Take some time to study up.
This is where your own research and self-awareness becomes pivotal. What will that look like? How will you handle it?
My first experience of serotonin syndrome came from an iatrogenic overdose of an SSRI. That was bad. But hey, I sure know what it feels like now! I back off on the precursor or med when I feel the slightest drift that way.
Personally, I normally cut back on the meds first, because they contribute more to the fogginess and confusion that makes life so sucky sometimes. This is how I handle it, because I am comfortable doing things like filing or nipping a bit off my pills to cut the dose down, and I know my body well enough to notice the effects.
Using these supplements appropriately — with all this awareness and empirical experiments on myself and so forth — has reduced the side effects from my meds while giving me much better pain control and a much pleasanter quality of life. That’s a huge benefit. Huge. Definitely worth the effort.
If you’re interested in doing this… be sure to research the possibilities; understand what the sources, benefits, and drawbacks can be; and learn to track your symptoms. When you feel comfortable trusting your mind to your knowledge and record-keeping skills, then experiment carefully to see what works for you.
I’m not going to patronize my readers by telling them not to take responsibility for their bodies and their knowledge base, but I’ll gladly remind you — as I’ve recently reminded myself — to keep paying attention. Whatever mistakes you make are as much yours to deal with, as your successes are yours to celebrate. I wish you all success.
Naturally, it’s a good idea to start small and work up until you notice an effect. These things rarely work instantly, so give it a few days in your system until you bump the dose up.
Just as with meds, go with M.E.D.: Minimum Effective Dose.
If you don’t know your body pretty well, it can be hard to figure out what deficiency or excess you’re dealing with. Most online definitions of these syndromes or toxicities discuss the extreme and life-threatening levels of toxicity, which are not helpful to those of us who are working out our supplementation and medication levels.
When I had serotonin syndrome, I simply didn’t care if I had anything to eat or if my laundry — or my body — got washed. Nothing mattered. The peace was outstanding, but the situation was not compatible with long-term survival. I didn’t have tachycardia, myoclonus, or tremors, and I only noticed my reactions were twitchy when my doctor did the knee-hammer thing.
This non-disastrous level of reaction matters, because this is where we have the chance to tune our levels and make our lives better instead of worse.
I took years to get to know my body’s reactions, knowing the time would pass anyway and I might as well be wiser for it. So I learned to be mindful and careful, pay attention to myself and my body’s signals, and do my homework on the foods and nutritional supplements I wanted to try. Everything has to make sense to me before I try it.
I don’t much care if a bunch of overpaid idiots agree. I care what works for me.
Currently, I’m on 500 mg a day and am noticing an improvement, although it’s a rather slow one. I now have a theory that my body can cache something in the chain between phenylalanine and dopamine, and the important thing to do is not to let that cache get too depleted. Once I’m back up to par, I may not need it all the time, but I need it often enough to keep my “backstock” up to par. Progress!
I’m going to go from once daily to twice daily on this phenylalanine, and once I get back to a tolerable baseline, go back down to once daily and stick to that at least through the winter. Then I’ll reassess, yet again, as I normally do every 6 months or so, and consider going down to every other day or so.
One thing you’ll discover in your research is why I use the d,l form of phenylalanine. Go on, check it out 🙂
Re-assessing meds and supplements a couple of times a year is just part of life now. Things change and I want to keep up! I can usually find an intelligent pharmacist to talk things over with, and those decades of tracking what happens to my body and mind serve me well when it’s time to fiddle my supplements, so I can take as little as possible for the best effect.
It would be all too easy to take dozens of supplements, because this set of diseases wears so hard on the body’s systems, from the intracellular organelles to the organs themselves — not to mention the nerves and circulation connecting it all. But that has its own pitfalls, in addition to the staggering expense. I stick to what works for me, and try to stay current on the theory of other things so I can give meaningful suggestions when people ask. Other people’s bodies are different from mine, and what works for one may be no good to another; we all have to be our own, not mad scientists, but sane ones… an interesting challenge at the best of times.
Wishing you the best of the new year. I hope it’s good to you.
Quick brain dump here. There have been a lot of questions lately about treatment options. THIS LIST IS NOT EXHAUSTIVE. It’s barely an overview. It’s just a note I worote in answer to someone who asked about prolotherapy, where a sugar or basic solution is injected into a painful area and the harmless irritation causes just the right kind of healing bloodflow for some people. Here is my answer…
Prolotherapy is one of those things that works great when it works at all. It’s definitely individual-dependent. The tissue irritation, so helpful to those who don’t have spastic vessels, can do a number on us. But not everyone.
If your CRPS is more peripherally maintained, then it might help, assuming the irritation does what it’s supposed to and the tissue response doesn’t trigger autonomic dysfunction, with circulatory weirdness and the whole color/swelling/pain circus that comes with it.
If your CRPS is more centrally maintained, which is kind of a hallmark of the ongoing disease, then I don’t see how treating the area with anything, let alone an irritant, would be any good. It does nothing for the central part of the nervous system.
I consider myself lucky that the usual pain meds nearly killed me, and I had to go the diet modification/supplementation route almost right away. Eliminating things that irritate my central nervous system, and supplementing with things that help repair damaged nerves and fragile tissues, was absolutely essential. If I hadn’t done that, I wouldn’t have lived long enough to do anything else.
At the risk of starting a shooting war here, the MCS (multiple chemical sensitivities) and neuro research hounds I’m close to, indicate that the most common neuro allergens in the diet are gluten (wheat, rye, barley, spelt, triticale, “natural flavorings”; oats have a similar molecule, so YMMV), corn (especially corn fractions like HFCS and “natural flavorings”), fresh dairy (which an incompetent gut like mine breaks down into a molecule a lot like gluten), MSG (often wheat derived), phosphoric acid (found in most dark sodas), and benzene (anything with the syllable “benz” in it — read labels, or better yet, don’t eat things that come in packages, which usually have BHA or BHT added to the packaging.)
Common neuro allergens in the environment include petrochemical products (photo chemicals, printing chemicals, gasoline, many cleaning products) and most chemical scents, most notoriously the line called Axe, which may trigger psychotic breaks in vulnerable people, according to disturbing reports.
A couple of techniques do address central sensitization:
– Calmare, which is a subtle, varied, electric signal that rescrambles the pain impulses and has given many CRPSers outstanding relief.
– Ketamine, which is an anesthetic that sort of reboots the brain. It must be administered by a competent physician well-trained in ketamine administration for CRPS, as it’s still a dangerous drug, but with right matching of patient to protocol, it can work wonders.
– Spinal cord stimulators. These are surgically placed and can be highly problematic, but if they’re the right thing for you, they can give you your life back to a large degree. There are electrodes shoved right into your spine, so if your pain is mediated mostly in the brain, not so good. If it’s still at or below the spinal root, excellent.
As for supplementation, which you don’t need doctors to do … Good, health-food-store supplements are essential. Don’t waste your money on the plastic pills at the pharmacy (check Consumer Reports to find out just how bad they are.) Your body is burning through nutrients desperately fast all the time. It can’t keep up. We need a healthy diet so as not to bring in more problems, but we can’t possibly meet our needs that way any more, with all the pain and the other cellular and metabolic insults of CRPS.
The nerve cells and muscle cells are the biggest suppliers and the biggest consumers of antioxidants. As muscle cells degenerate and nerve cells take a beating, they need more and more but can produce less and less. The math catches up to us after awhile and then it takes time for the supplementation to penetrate enough of the starved tissue around the gut to work its way to our CNS — but, from my experience, it was well worth it! The time was going to pass anyway, and I was better at the end of it.
Neuro-oriented antioxidants include SAMe (a type of methionine, primal antioxidant used inside the mitochondrial cell), N-acetyl cysteine (NAC), and co-q 10.
Vitamins A, D, E, K, and moderate amounts of C are important, especially the D3 — much bone loss and the concomitant pain could likely be avoided if we all had our D levels checked and then supplemented accordingly.
(I’ve been told that C can become pro-oxidative in a sickly environment, so I have to look into that.)
B vitamins are absolutely crucial to neuro and other cellular repair, so a good B complex is important.
Magnesium, whether as lotions, Epsom baths/rubs, or supplements, is essential. It’s simply huge for cutting spasms, which underlie so much of the nagging side of the pain, and supporting basic cellular functions as an electrolyte.
There are supplements that can provide precursors to neurotransmitters, and I find they roughly double the effectiveness of my SSRI and SNRI, keeping me in the low-middle range of doses instead of me getting overdosed to near dying as I once was. Phenylalanine is a precursor for dopamine and norepinephrine, and the d,l form has been found to be genuinely helpful in reducing nerve pain for many. It also helps me stay less confused (dopamine, perhaps.) 5-HTP is widely known as a serotonin precursor, as is tryptophan. Both can help with sleep, too. I do better with 5-HTP.
There are a lot of brands, and there’s a lot of behind-the-scenes business ugliness behind the brands as the whole “natural everything” movement creates the possibility of money. I’ve watched the circus for awhile, and at this point, there are just a few brands I can recommend as still being good, consistent, and generally digestible:
Jarrow (great antioxidants)
NOW (inexpensive and very good; I always get my 5-htp from them)
RAW Vitamin Code (a Garden of Life line of food-based products, excellent; I take only half the recommended dose of the multis, and boy do they help)
Twinlabs (my second choice for multis and neurotransmitter supplements; widely available)
Solgar (pricier than Twinlabs, but much the same; widely available)
My fallback brand is Life Extension, which is still excellent.
I get mine for wholesale at vitacost.com (fast delivery, but don’t carry Jarrow), luckyvitamin.com, or occasionally for a bit more at Amazon if the others are out of what I need.
It’s a hideously complex disease, and in cases like ours where conventional medicine has almost completely failed, we have to take charge of that complexity and redesign our lives in order to have something worth living.
We really do have to change or die, and it is a surprisingly hard choice at times.
Further comments and suggestions on treatments and management would be most welcome.
Older Brother and his wife, Aunt Krusty, sent me a fabulous little doohicky from a medieval town they visited. It’s a brooch of a common design element used in the Middle Ages: a tabby cat with two tails and fabulous eyebrows offering a mouse, with the legend, “visis mu” — “here’s the mouse.”
The enclosed card contains the usual wonderfully vague, semi-academic wording saying that animals with two tails (no mention of fabulous eyebrows) are signifiers of evil forces at work, but beyond that, nobody really knows what this means.
I thought some academics kept cats…?
My lovely polyglot friend Sylvie does. Sylvie is a CRPS compatriot who lost a frightening percentage of weight late last year, from which she’s still recovering. Her cat Nala has become a serial killer of the entire species Rodentia, bringing her grisly accomplishments to lay at Sylvie’s feet — or couch, or pillow — with startling frequency. Naturally, they aren’t always quite dead.
Cats don’t have thumbs, so they don’t really get it about cooking and cupboards. All Nala knows is that Sylvie obviously needs to work on her hunting skills, but in the meantime, Nala can at least help her fatten up.
Also, cats tend to gatomorphize, just as those of us who are close to them tend to anthropomorphize. Nala has no idea that mice, gophers, shrews, and moles do Sylvie no good at all; that, on the contrary, they’re upsetting, messy, and potentially infectious. Nala thinks they’re good, and Nala cares for Sylvie, so they must be good for Sylvie.
She honestly believes that, with all her furry, loving little heart. “Visis mu! Have this great mouse!” So the slaughter continues.
Sylvie’s garden blooms, but her house is an abattoir at times. This is not a bad metaphor for explaining one of the more difficult aspects of being under a doctor’s care.
Most doctors really mean well. Becoming a physician takes an enormous amount of work, which requires great commitment to complete. It’s a hard job with ridiculous hours, especially for the first few years.
That doesn’t mean they’re all bright or gifted or even humane. It just means they believe in the value of medicine and surgery, enough to spend a decade or more learning to do it.
Doctors are intensely, let’s say, socialized to stay within the parameters of accepted practice. It keeps them out of trouble, although it may also keep them from true excellence at times.
Mostly, they love those parameters. They love having guidelines. They are truly, madly, deeply convinced of the value of the meds and procedures that they’re trained in. It doesn’t help that, if they put a foot wrong outside of those parameters and things don’t go well, they can lose everything. They are heavily incented, so to speak, to stay inside whatever they understand their parameters to be.
Now, this is tough for CRPS patients. There is so much variation from one CRPSer to the next, that there are NO established treatment parameters that meet the medical gold standard of being consistent, repeatable and reliable over a majority of patients.
None. Nada. Zilch. There is not one thing that consistently works well for most of us — at least nothing that comes from a bottle or an operating room. Activity, rest, hydration and nutrition all seem to be key, but even their benefits are hugely variable, and you rarely hear about them from physicians.
For a while, it was thought that COX-2 inhibitors combined with membrane stabilizers, came close to being a semi-magical bullet. (Gabapentin/ Neurontin, pregabalin/Lyrica, and so on, are known to most patients as anti-seizure meds, but many healthcare providers call them membrane stabilizers.)
COX-2 inhibitors were given a general thumbs-down over cardiac effects (which many people with chronic CRPS have enough trouble with anyway) and, as peri-surgical meds, did not live up to Reuben’s promise that subsequent chronic pain would be less.
Ironically, it had already been established that 500 mg of vitamin C two or three times daily for 3 months after surgery does have significant demonstrated benefit, reducing the incidence of CRPS – the most intractable and severe form of chronic pain – by 35-80%, depending on the extremity, extent of injury, and probably the degree of compliance. Moreover, vitamin C is very cheap, as well as very effective. (See extensive links list below.)
The anti-seizure meds, unfortunately for pain patients, did not get removed from first-line treatment.
By then, unfortunately, whole nations (Great Britain and the Netherlands, take a bow) had adopted Reuben’s corrupt recommendations for first-line treatment. It takes a lot more effort to undo that level of adoption than it does to hoodwink an entire sub-economy of peer reviewers and medical specialists, apparently.
The arrogantly reputable journals that accepted his work, and subsequently published other work which was based unquestioningly on his false results, are still trying to live it down. What’s interesting is that other doctors couldn’t replicate his results, so he was the only one publishing these great data… yet journals and physicians continued to publish and follow his recommendations. I do hope the journals revised their “peer-review” process to include more actual, I don’t know, reviewing, perhaps by peers.
It could take decades to undo much of his damage, and meanwhile, the advancement of treatment has been down the wrong track for years, while other more appropriate avenues of treatment have been ignored or even forgotten.
So, millions of CRPS patients are being first-lined with truly obnoxious meds with iffy benefits and ghastly side-effects, rather than being examined as individuals, and assessed as to whether:
neurotransmitter support, most provably with antidepressants, would be more appropriate, given disease-related onset of affective symptoms (antidepressants), sleep problems (tricyclics), or dysautonomia (SNRI);
a short, hard attack of narcotics and aggressive PT would answer in the case of a hardy, active, or young person;
a proprietary or tech-based treatment, like TCMI or Calmare, are indicated for those who show active neuroplasticity or respond well to electrical stim; or
this person is a good candidate for ketamine protocols of one kind or another, some of which are no more toxic than membrane stabilizers.
it might be reasonable to try a more experimental approach which has demonstrated significant promise, notably magnesium infusions, immune globulin therapy, or temporary immune suppression.
Oops… Doctors, as a group, forgot to look at the patients in their excitement to have a designated treatment protocol. “Visis mu! Take this mouse – it’s government approved!”
But the doctors doing the offering really think this is a great idea. That’s what the guidelines say, after all, and they are evidence-based – except that that evidence was cooked.
While anti-seizure meds do work very well for some, starting with them reflexively is not reasonable: the cost-benefit profile is worse than most of the other potential first-line alternatives, due to high rates of side effects and comparatively unimpressive rates of usefulness.
Using them as a first-line treatment delays more effective, lower-cost treatment for many people in horrific pain, and, between the delay and the cognitive and neurologic side effects of this class of drugs, causes greater impairment (with higher associated costs) in far too many. It should be a second or even third line treatment, if you go by the evidence that has remained credible – taking a back seat to less fraught (not perfect, but still less problematic) therapeutic agents and interventions.
But the docs who lean on it really think it’s great.
Reminds me of my previous pain doctor, a competent technician with a bedside manner directly related to the patient’s appearance. He has a good reputation in his area – which tells you what a lot of rubbishy practitioners there were in the area.
He wanted to shove into the neck of my spinal column a couple of widgets which were the size of Starbucks drinking straws – you know, those really fat ones that you could suck a steak through, if it’s tender enough. Two of those, jammed into a six-inch length of a space that didn’t have enough room for one, and which – as we now know – was already inflamed in much the same way that the spinal cord of someone with a spinal cord injury is inflamed.
He liked it because shoving surgical hardware into other people’s bodies is what he does best, and these widgets have embedded electrodes which could zap the pain signal at the spinal root of my arms and he thought it would work really well and I had the right psych profile for it and this was the greatest thing since sliced bread.
It was a nice idea, and, again, this particular thing works spectacularly well for some people. For me, not so much. In fact, it was a disaster. It was truly worse than the CRPS pain, which takes some doing. The equipment trial still gives me spasms due to the mere memory of the staggering physical trauma it entailed.
Truly, each of us is unique.
Once he realized that I couldn’t accept his mouse, his whole manner changed. Just like a sulky cat, nursing his disappointment seemed a lot more important to him than finding something that would help me.
How could I be so callow and blind that I couldn’t appreciate this great mouse he wanted to give me? There’s just no helping some people! His neglect and disaffection was so damaging I had to fire him and move on to the excellent Dr. Richeimer at USC Pain Center, 4 hours’ drive away and worth the two-night stay in the armpit of LA.
Another dear friend, the angelically kind M, has roughly 3 dozen anaphylactic reactions a year. She is so hyper-reactive to so many things that driving past a town with the wind in the wrong direction could be the death of her. 3 dozen anaphylactic reactions a year, and she’s in her fifties now. Yes, amazing.
She saw a young cardiologist, who did what young cardiologists do: he threw upon her a huge, bloody gopher, covered in prickles and gore. “Your heart is dicky! This could kill you in a year! Visis mu, I can save you! Isn’t this exciting?”
Personally, I think the appropriate thing to do is to pick that gopher up and shove it down his throat, but when a patient does it, it’s assault and battery with a biohazardous weapon.
The cardiologist, naturally, is doing exactly what he was trained to do and is wildly excited to have such a thrilling case and such interesting news. She, who already faces death on a weekly basis, should clearly get wound up about this because it might kill her if she doesn’t.
A brickbat? A muzzle? What do you think? Words simply fail. All I can think of is applying to him the kind of cat that has nine tails. It’s not a good way to model compassion, let alone tact, however.
As for me, I have to pick a primary doc for myself. My old one retired from private practice, and I miss him, because I could just walk in and look at him and he’d know.
I’m just thrilled at the prospect of training someone new, who will be a generalist treating the peripheral issues of someone with an incredibly peripheral-intensive disease. There will to be many rounds of “visis mu”, as he comes up to speed. And, since it’s all well-intended, I have to find a way to accept one or two mice as graciously as possible. One can only recoil so often before they decide they can’t treat you.
They mean well. They really do.
I never have figured out what to do when a cat, with every evidence of caring attention, brings me a mouse. I try to be nice about it, and that’s the best I can do.
Sadly, Sylvie’s furry little caregiver, Nala, departed this earth for the Happy Hunting Grounds. By a series of flukes, Sylvie wound up with a rescue cat, Filou (meaning roughly “brat” or “mischief-maker”), who has taken over her care with great enthusiasm — and much less bloodshed.
Relatively useful treatments for CRPS:
Most suggestions are pulled from the current IASP recommendations for diagnosis and treatment of CRPS or the pivotal work of Dr. R. J. Schwartzman, Dr. van Rijn, and Dr. Breuhl (part of the team that developed the IASP guidelines), with updates from recent science available on PubMed.
The authors have their blind spots and biases, of course, so researching any therapies that sound interesting is a good use of time.
The National Library of Medicine at the National Institutes of Health (U.S.) is an outstanding clearinghouse of articles from peer-reviewed scientific journals: http://www.ncbi.nlm.nih.gov/pubmed/?term=complex+regional+pain+syndrome
Just add the term of the treatment you’re interested in to the MeSH term, “complex regional pain syndrome”, to maximize useful hits.