This is a brain-dump and research-blurch I just did for a compatriot. These are issues that come up occasionally — every 28 days, for many — and always deserve good answers. Lots of links to scientific articles here.
There has been little research on women’s experiences of CRPS in terms of menstruation and pregnancy & breastfeeding. Gee, surprise surprise!
So I’m working to come at the issue sideways: looking for info on hormonal changes during menstruation & during pregnancy, and the effects that those hormones have on deep or central pain. Tedious, but possible.
Also, I only have access to those articles which are publicly available. Many are kept under wraps because it’s one way that labs protect their intellectual property, sigh.
PAIN & CHEMICAL-MESSENGER BASICS
Pain-related cytokines (this is old information, so these studies are old, but still informative):
“Recent findings on how proinflammatory cytokines cause pain”
This article specifically cites 3 main culprits in neuropathic pain: IL-1beta (interleukin 1-beta), IL-6 (interluekin 6), and TNF-alpha (tumor necrosis factor alpha, which does a lot more than kill tumors!)
The publicly-available articles on cytokines’ role in pain are abundant from the early part of the millenium (1999-2010) but seem to disappear after 2013. I assume a lot of patentable activity is going on about it now, and given the usual lead-time on drug development, may not be available even for human trials for at least 5 more years.
Your pain specialist should be able to pull up more recent articles to share with your OB-GYN about that.
“Oxytocin – A Multifunctional Analgesic for Chronic Deep Tissue Pain” 2015
“Oxytocin and the modulation of pain experience: Implications for chronic pain management” 2015
Pain-related cytokine & hormonal changes around menstruation:
“Impact of Gender and Menstrual Cycle Phase on Plasma Cytokine Concentrations”
Women always have more pain cytokines than men, but they have more still during the luteal phase of the cycle, right after the egg is released (a.k.a. premenstrual phase) and leads to menses.
Since there’s so little science on menstruation in those with pain disorders, I include an article on menstruation & cytokines which explicitly draws a conclusion that *menstrual tissue itself* is the cytokine trigger (and endometriosis is basically an exaggeration of it), a conclusion which does support our experience of higher levels of CRPS pain with menses:
“Menstruation pulls the trigger for inflammation and pain in endometriosis”
PREGNANCY & BREASTFEEDING
Breastfeeding confers protection against noxious brain chemistry:
“A new paradigm for depression in new mothers: the central role of inflammation and how breastfeeding and anti-inflammatory treatments protect maternal mental health”
Has loads of references. It’s from 2007, but it’s so approachable I want you to have it anyway. Besides, the chemistry of our bodies hasn’t changed, only our understanding has increased.
Here’s an update by the same original author:
“The new paradigm for depression in new mothers: Current findings on maternal depression, breastfeeding and resiliency across the lifespan” 2015
It may be risky to include this, depending on your OB/GYN, because of the brutalizing confusion and ignorance around depression — widely seen as a character flaw and sign of weakness, when it’s just an overwhelming neurochemical state, and incidentally overlaps significantly with the overwhelming neurochemical state of neurogenic/central pain. In short, things that alleviate/mitigate depression also usually alleviate/mitigate central pain. It’s very simple.
GOOD TO KNOW
Let me give you two names to pass on to doctors willing to learn, for great info on CRPS: R.J. Schwartzmann, who retired in 2012 but whose work remains the most intelligent and articulate among CRPS researchers; and currently Breuhl and van Rijn are doing good work too.
More articles listed here by a trained 2dary researcher: https://elleandtheautognome.wordpress.com/crps-frequently-asked-questions-faq/
Another great question about an ordinary (for CRPS!) change led to another “Isypedia” blurch. Here goes.
Once in awhile, something changes out of the blue. What is a CRPSer to think when suddenly caffeine and chocolate cause massive itching?
Nerd note: Yes, the word “caffeine” is used differently in ordinary speech than it is in botany or food chemistry. That’s okay.
There is a chemical class called xanthines, of which caffeine is one member.
Related chemicals, with very similar or nearly identical activity in the body, are lumped together and called ‘caffeine’ in ordinary communications.
“Why? Why this sloppiness??” I hear some of you cry.
Because most people are not food chemists, and what’s important is what it does to you, not exactly what to call it.
Technically, tea contains theine, mate contains mateine, coffee contains caffeine, and chocolate contains theobromine (and sometimes a tiny amount of caffeine.)
Neurologically, it’s all “tomayto, tomahto.”
Back to our blog post.
On developing food reactions in CRPS
First, it’s not unusual (yet not really normal) for CRPSers to develop new sensitivities and allergies out of the blue. This has to do with several things, as a rule: the digestion doesn’t break down proteins as well as it used to, and those proteins are more provoking to the immune system than they would be in a healthy body.
It’s worth noting that allergies (and many sensitivities, which can also be histamine reactions — another note for my fellow nerds) happen on the basis of molecules, not teaspoons or larger doses — and, at that micro level, everything has protein the body can react to.
Second note on allergies is, that most of what we eat contains more than one thing we could be reacting to. If I thought it were the caffeine and chocolate setting you off, I’d want to check those labels and look for similar additives.
If you’re using medical marijuana (great when it works! Wish it worked for me) then look into how it was grown. Aim for organic and, if possible, outdoor-grown. If you have allergies or sensitivity to iodine, egg, etc, then you may need to dig further and avoid marijuana grown with fish compost, chicken manure, or what-have-you. You may need to cultivate (as it were!) a relationship with an individual grower who can meet your needs.
On neuro causes of itching
However, you’re specifically noticing reactions from caffeine and chocolate, which — specifically — can activate the C-type fibers in your nervous system — the very fibers responsible for the sensation of itchiness and also for the surface hypersensitivity that go with CRPS.
So, it’s very possible that it’s not so much an allergy (which is a protein response) but that you’ve developed a neurological hypersensitivity to these C-fiber-stimulating chemicals.
In that case, it’s not just a question of avoiding caffeine and chocolate (sorry!!!) but also supporting the C-fibers so they can calm the heck down and not go further into their over-reacting.
On other causes of itching
Have you changed meds in the past few weeks? MANY meds can cause itching, especially neuro-active meds — and most meds that we take are neuro-active in one way or another.
Check with your pharmacist or doctor right away if you develop itching with a new medication.
Have you changed laundry detergent or other things that come in contact with your skin? These could increase your skin’s reactivity.
If your neurological system is being hyper-reactive, it’s not a bad idea to switch off of scented products. Keep in mind that they don’t have to test something for safety before marketing it, and their profit depends on consumers not asking too many questions. Just food for thought.
Things to try that don’t require a doctor
Some things to try for itching, if you aren’t already doing them, are nutritional (something to swallow) or topical (something to apply to your skin.)
Nutritional care for itchy nerves
– Vitamin C, preferably Ester-C (food-based, and specifically easy on the stomach and slow-releasing.) Vitamin C is one of the few food/nutrition things specifically studied in CRPS. It’s wonderfully neuro-protective and most forums recommend making it part of daily life. The range studied was 1,000 to 1,500 mg per day. Some people take 500 mg /day with good results. I take 1,000 mg.
– Magnesium, either as digestible chelates in capsule form, or as Epsom salt in a not-too-hot bath. This can really soothe hyper-reactive nerves, especially the C-fibers. If you take the capsules, take with food, partly to improve absorption and partly because magnesium can be a little hard on the stomach. (For internal use, stick with the chelates. Don’t drink Epsom salt solution unless you want to clean out your GI tract really fast.)
– Other nutritional supplements that can help moderate that itchy C-fiber activity are, believe it or not, Calcium (food-based, not rock-based) and vitamin D3. The physiology is kind of complex, but it boils down to this: Calcium not only builds bones, but it handles certain kinds of nerve transmission; D3 stabilizes the behavior of Calcium, so it doesn’t wander off in the wrong direction. Not surprisingly, CRPSers (and everyone who’s chronically ill, even in sunny locales) tend to be very low in vitamin D3. Talk to your doctor or pharmacist about your condition, your symptoms, and what dose of D3 to start with. Although too much can be toxic, that’s not something you’ll be dealing with for awhile! Unless you’re tracking this already, you’re likely to be quite low in D3.
Topical care for itchy skin
– Certain oils can help tremendously.
* Emu oil (not suitable for vegetarians) is packed with antioxidants and anti-inflammatories. It’s absolutely amazing for pain. It’s extremely well-received by most skin, and absorbs several inches deep into the tissues. This makes it a great carrier oil, as it can carry whatever is added to it right into your tissues. Be sure to get AEA certified emu oil, as that’s the only kind known to be 100% real. (Because it’s not cheap and not regulated, all kinds of things get tossed into a bottle and labeled “emu oil.”) Cheapest brand of AEA certified I know of is Pro Emu, available from proemu.com and amazon.
* Sweet Orange essential oil. Always, always blend this at 1:15 or more with other oils, because it can cause chemical burns (first time I used it in a bath I didn’t dilute it! Never making that mistake again! LOL) In other words, a few drops of Sweet Orange oil to a couple tablespoons of any vegetable oil or emu oil, makes a great treatment for that C-fiber itching.
* Clove essential oil is better for nerve pain (been used for thousands of years for nerve pain) than it is for itching, but it sometimes helps me with my itching. Same precaution about diluting the heck out of it, applies. I mix it with Sweet Orange and Emu oil for a one-size-fits-most solution.
– The herb Melissa officinalis (also called lemon balm), either as tea, hypercritical extract capsule, in the bath, or on a washcloth used as a compress, can also be helpful. It, too, has been used for thousands of years to treat inflamed and over-reacting nerves. It’s good for itching and great for nerve pain. It blends very well with chamomile, which also has anti-inflammatory (not NSAID-like; works differently) and can soothe itching.
– Some find oatmeal baths helpful, especially when it’s an allergy itch. (Sometimes it helps with a C-fiber nerve itch.) Put rolled oats in the blender and whirr the heck out of them to make your own “Aveeno bath”, and use about 1-1/2 tablespoons in your bath.
I can’t go near oats because they trigger gluten issues for me, but that’s my problem. If I could use oats, I’d add a few drops of orange oil mixed with carrier oil right into the whirring blender and whip it right into the oat powder.
What’s cheapest and most reasonable of these things depends on your situation and circumstances. I hope you find something helpful here.
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!
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!
My pain diagnostic specialist is elegantly opinionated. Fortunately, he acts out the distinction between being opinionated and being rude about it.
We talked over a few things today. He’s still researching my past exposures to uranium, which he has a hard time believing wouldn’t have lasting effects.
He spent a lot of time combing through the idea that evidence-based medicine (in the sense that doctors use the term, not the sense that insurers do, where it means “how can we treat this as cheaply and barbarically as possible”) is really the best and least scary thing out there. Because, data.
I mentioned Dr. Scott Reuben at this point, and he owned that the scientist-practitioner does have to practice with integrity for the science to be meaningful.
He went on to say that the miracle cases that wind up in the literature leave physicians panting to find the next patient who shows up looking just like that case, so they can try the miracle. Doesn’t happen much, and so, there winds up being a paucity of data on rare cases (like mine) that meets the criteria of medical science as he sees it should be.
In the end, as always happens in conversation with a physician who has intellectual integrity, we found ourselves in the cleft stick of modern science:
While statistical probabilities indicate the best chances of success for groups overall, it has two glaring weaknesses, even in ideal circumstances: statistics depend on copious data, which aren’t always obtainable; and statistics mean nothing in the case of the individual.
Thousands of individuals are studied in order to come up with meaningful statistics. Of those individuals studied, how many respond to the treatment at the level of the group’s statistical probability? How many patients in real life will respond at that level? Pfft. All the statistics do is tell you how much of a crap-shoot a given treatment really is; it doesn’t tell you how well or badly it will do for you.
Last Friday, I saw my allergist/naturopathic MD at Northampton Integrative Wellness. He’s exploring mold toxicity, which sure hits all the hot issues I deal with. It doesn’t meet Dr. Saberski’s mental criteria, as I suspected, but that’s okay — I don’t need Dr. Saberski to follow up on it. I need someone like the docs at Integrative Wellness, who have the relevant background and tools, to follow up on it.
Because of my own experiences, I don’t necessarily assume that a well-educated, well-respected, well-published physician necessarily has a lot of intellectual integrity. However, I’ve come to the conclusion, through our conversations and his decisions along the way, that Dr. Saberski’s entire being (at work) is oriented on intellectual integrity.
We may not view things the same way, and he may not be thrilled at everything I do, but the fact is, he shouldn’t have to be. He’s delighted with my good results when I get them, and if this mold toxicity thing pans out and the treatment goes well, he’ll be truly elated for me — and will keep my chart on file, just in case I come back later.
I find it HUGELY relaxing to have such a resolute scientific conservative with such ferociously diligent, relentlessly inquisitive intelligence, which is completely balanced on intellectual integrity, on my case.
All I have to do in relation to the standard science is let him do his job! I do not have to educate this one — quite the reverse! I savor our conversations and make extensive notes, because he always has something to teach me. (Today’s exciting topics: what makes me NOT look like CRPS; the Flexner Report in history; how anesthesiologists, who have the diagnostic training of a spaniel, wound up running pain clinics — another stupid consequence of US insurance companies; and how the nociceptors and immune signaling in the skin are all entangled into being one thing. Woot! Fun stuff 🙂 )
That, frankly, has been unheard of for most of my time with this illness, whatever it turns out to be. I’m well and truly rid of the fearful weight of using my rare full-brain times to try to stay one step ahead of the risk to my survival and management that every doctor visit can be.
I can use my full- and even three-quarters brain time to study up on the stuff he can’t be interested in. For one thing, the vocabulary and writing style is usually less klunky and demanding. For another, that is supposed to be my job.
Patients should figure out what they can do for themselves without making things worse, so I’m happy to do that.
Now, I’m going to find out more about mold toxicity, methods and treatments, plus what data do exist on what to expect from those treatments and what they do in the body. According to my current info, the main researchers are Shoemaker on one hand, and Nathan and Brewer on the other. My allergy/naturo doc is leaving, so I’ll have to start with another one at the same practice. This means I’d better prepare, so I can move the conversation forward a little faster than usual. That means being able to speak her language in regard to what we’re looking into.
I find it’s best to impress doctors right off and for the first several visits, and then, if I’m having a bad day another time, they have a meaningful bar to measure against, and they don’t lose respect for me or dump me into that “just another whacky pain patient” mental garbage-can. I work hard to make visits as useful as possible, as regular readers know.
I’m also getting ready to do another massage intensive. Looking forward to that! It’s pretty uncomfortable for a couple weeks (arnica pills 6c and 30c, and Advil Liqui-Gels, are essential pre- and post-massage medication), but the payoff could be so spectacular. I’m tired of the downward slide and intend to crank up the functional level one way or another.
Winter bit me pretty hard. It’s time to start biting back.
I’m going through one of those periods where I’m just tired of my body hurting.
This is one of those offhand remarks that makes fellow painiacs nod understandingly, offer a kind look or emoji, and move on, but it makes normal (-ish) people with good social skills cringe and stops the conversation in its tracks.
I don’t want to make nice people cringe, and I don’t want to kill the conversation. I was recently reminded how hard it can be to avoid that while answering “how are you/what have you been doing” with any honesty. In fact, I find myself talking about most of the past 20 years in terms of not getting dead.
I think that’s a hoot, because it’s so improbable and so much against my initial setup and programming. (I have a truly dreadful hangman’s humor.)
Needless to say, most people think it just sounds grim.
My setup and programming
I’m the offspring of a diplomat and a working artist, well-traveled and extremely well-educated, Seven Sisters undergrad… until I went off-road and became something totally bourgeois and practical (a registered nurse) and, when my immune system conked out for no apparent reason, went on to become something nouveau and nerdy (a writer documenting high-end programming software.)
It was a sweet setup: good brain, strong body, great start to a useful life, good plan B when plan A failed.
Eventually, this promising start led (via surgical complications, neurological disruption, extensive worker’s comp and SSDI abuses, failures of care and denials of treatment, tediously protracted near-death experiences — a term I’m longing to refine — and years so close to utter destitution I refused to look at dumpsters because I knew I was not far from winding up in 2 or 3 of them simultaneously, like the other invisibly disabled woman of my age, build, and coloring who landed on the streets of Oakland) to my utter destruction as a professional entity.
That was definitely not in any of the scripts my life was supposed to follow!
My childhood friends now have their own businesses, pocket palaces, successful careers in the arts (most), policy/diplomacy/public service (some), and STEM (a few), and in raising children with little concern for whether they can feed them. I’m deeply relieved and happy for them, while realizing that my own life-path got so completely hijacked I have no idea what I’d be doing if it hadn’t been for this.
I bet I’d be complaining more, but I’d be doing more too. I wouldn’t be hurting this much for decades, if ever, and even then, only if I had terminal cancer.
Which brings us to a key point: to discriminate against the disabled is to discriminate against your future self. We’re all getting older; with more lifespan come more proofs of mortality, which include reductions of function, stamina, mobility, and even memory and reasoning.
These, folks, are disabilities, and either they will happen to you or you will be a premature death statistic. There’s no third option.
This is why, when you discriminate against the disabled, you discriminate against your future self — and all those you love.
I wish legislators had the humility to remember that. Perhaps you’ll remind them… Find yours at www.usa.gov.
Where was I? Oh yes.
How do I talk about the last 20 years, especially the last 15, with a person who hasn’t spent an appreciable part of life dancing with Death and occasionally taking the lead?
How can I convey how incredibly marvelous it is to have a minimum of 2 functional hours — consecutive hours! That’s thrilling! — nearly every single day? And yet, I used to work 10 or 12 hours at at time for preference because I loved immersing myself in the work.
In comparison to that, isn’t 2 hours pathetic? Especially because I did very demanding work, and 2 hours of noodling around in the yard or walking around downtown really doesn’t compare.
It makes me realize how long it’s been since I even thought about the razor-wire-bound memories of “how I used to be” and “what I used to do.”
I compare only as far back to 2008-2012, the pit of the pit, the nadir of my existence.
Compared to that, I’m fantastic! Being fantastic is a great thought!
Being at maybe 10% of my youthful vigor is actually amazing, because during that time, I went from being so close to dead it took 25 to 30 minutes to drag myself, fist over fist, all 6 feet from my bed to the other end of the settee, to feed the cat in the morning. I think that level of function (or nonfunction) is a percentage of my youthful vigor that’s several digits to the right of the decimal. It felt like a negative number, that’s all I can say for sure.
There’s nothing I can do about the past, only the future. That’s not pathetic, it’s just life.
Actually, I feel that way about most of this chronic-illness gig. It’s not pathetic, it’s just life.
The power of “use it or lose it” as a tool under your control
The trick to living with chronic illness is twofold:
Figure out what it takes to manage your illness without letting it take up all your focus. It does not belong in center stage, or not often anyway. Life belongs in center stage. Figure out how to make it so.
Figure out how to have a routine, some sort of rational approach to every day. It’s all too easy to lie back and let the world go by. Speaking as an old nurse, I know the immovable truth of the old adage, “use it or lose it.” Having a routine stabilizes the body’s coping mechanisms; knowing what to expect soothes the central nervous system and simplifies healing. So, make a routine; decide what happens next. Make yourself do things, alternating activity and rest. Use your body, use your mind, rest, then use different aspects of your body, different aspects of your mind, rest, and so on.
These two strategies allow me to make more room, more time, and have more attention, for joy.
Joy is not a luxury; it’s essential to proper function.
The gut, brain, immunity, everything, are worse off when there is no room for joy. Whether I can appreciate my partner, the sunshine, a lolcat, whatever, I grab each opportunity for a shot of delight. I call those bursts of joy “brain juice”, because they boost useful neurotransmitter patterns and, cumulatively, reduce my pain and improve my function.
Bit by bit, even as age creeps up and new issues arise, I find myself better and better able to make use of what I still have. In fact, over the last year, with safety and sanity finally framing my existence, I’ve regained an amazing amount of function. I’m so pleased! (Oo! More brain juice!)
I still don’t know how to explain this to a normally healthy person without sounding like something from another realm of existence.
Different is probably fine
Perhaps I am from another realm of existence.
I’m certainly from another realm of experience; longstanding profound illness is special like that.
Perhaps I simply need to get over this idea that, just because I’m back home or just because I’m talking to someone who knew me when I was an arrogant young jerk and saw beyond that to someone worth liking, I should fit in with them.
Perhaps I should have more faith in myself to be interesting and likeable enough to shine through even the CRPS. I clearly shone through the old arrogance and jerkiness, somehow.
I’m far less confident, eloquent (in person), and humorous — at least, less intentionally humorous — than I was in my 20s or 30s, but I’m a whole lot more confident, eloquent, and (occasionally intentionally) humorous than I was a few years ago.
So, I need to remember to keep my focus relevant, and not think too far back.
Emotional boundaries: My pain shouldn’t be your pain
There’s a trick to disclosing without wounding, even when what you’re disclosing is tremendously difficult. Good boundaries are key.
You may have noticed… people tend to pull away from pain. It’s an ancient reaction that happens in the most primitive parts of our central nervous systems. That means, when we’re too raw about our pain, others may pull away from us because that primitive response combines with their emotions around pain, and our pain makes them hurt emotionally.
I remember how I used to open with the idea that my pain is my pain and others don’t need to imagine it or take it on.
This approach of “it’s not your pain, so let it go” frees many people up to re-engage from a rational distance which works for both of us. It’s important to give others the distance they need, because then they don’t feel a need to pull back further to protect themselves, and can stay in contact. They don’t feel driven to pull away from all that pain.
Each of us, well or ill, has to carry our own load, and really isn’t equipped to take on others’ loads as well. I try to remember that and respect the loads of others. It usually works out well.
Come to think of it, it’s essential to relationship maintenance.
Taking it on vs. bearing witness
When I was a nurse, I dealt with harrowing human experiences all the time. I could handle it with real care, and go back next day and do it all again, because I was clear that my load was my load and their load was their load, and the most healing and empowering thing to do for another person is to bear witness to their struggle without trying to take over. The one with the struggle is the one best qualified to find their best solutions; having that implicit faith in them, I found, is tremendously powerful.
For those of us in dreadful situations, we don’t get to choose the reaction others have to our struggles. All we can do is try to back-lead, essentially, guiding them tactfully to a more comfortable position.
Allowing well-intended people to bear witness in a safe way is a natural outlet for the sympathy and compassion evoked in decent people. Letting them get sucked into the awfulness doesn’t help anyone.
Put that way, it’s a lot more clear to me. It’s another form of radical presence/radical acceptance, a mental tool which boils down to, “Things may suck right now, but here I am, it is what it is, and this will pass.” Try it — you’ll be amazed how much mental energy it frees up.
The approach for discussing my illness with others may go more like, “It sucked then and it sucks now, but the worst suckage is behind me, it gave me great opportunities for growth and I took ’em. At this point, I’m better at looking ahead than looking behind, and hey, I’ve got interesting projects going…”
So, first I should clarify the needful boundary between my personal load and the rest of the world, and then I can discuss all this with some detachment from the gluey-ness of remembered distress, unbelievable losses, and intransigent pain, and best of all I can point the conversation towards something much more positive.
I’m still not sure exactly how to do that, but I’ll practice.
I’m definitely better at looking ahead!
Well, I don’t know about you, but I feel a lot better about this already. I’m grateful for your company as I figure out my rubric for yet another tricky twist of the Rubik’s cube of life.
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.
Someone asked a question on social media that led to my doing a brain-dump on the basic format of current treatment for CRPS. This will take on a more formal form, but right now, for quick reference, here it is.
Like many others, this person has narcotics as a primary form of pain control. Increasing the dose increases function, but past a certain point, is that a good idea?
And, more importantly, the biggest question was, what does it really take to be able to have a life again?
Common-sense note on narcotics
Firstly, it is GREAT to have something that works. I know plenty about narcotics from a physiological and neurological and even a gastrointestinal standpoint, so I know the arguments for and against — but, when all is said and done, it’s great to have the option and it’s great to have something that works for you.
Keep what works! Unless and until you really can replace it with something better. (Clinicians, in their overbearing way, can be pretty cold about this.)
In the end, if you need to increase the dose, then increase the dose, but given how our bodies adapt and the disease shifts over time, it might be good to keep higher narcotic doses in your back pocket for breakthrough pain and flares, and see about the other meds that treat nerve pain specifically, support (in some cases) your neurology so you can function better and be more stable, and leave some slack in your body’s narcotics “budget” for other times.
Doctors should be able to support the idea that you should be able to have a life, and happy to help you figure it out. Good pain specialists have this as a specific goal which they try to help us reach as much as possible for as long as possible.
Read tamingthebeast.ca or elsewhere on this blog for loads of tips on nutrition, homeopathics, herbs, and other at-home strategies. This is just about the stuff your doc can do for you.
I mentally break these into 6 categories, 3 of oral meds and 3 of other, more interventional stuff:
Neurochemical support: Mostly antidepressant-category meds, from tricyclics to SSRIs to SNRIs. SNRIs have the significant bonus of potentially stabilizing a faulty ANS.
Transmission shifters: Mostly anti-seizure meds, Lyrica and Neurontin. Ketamine certainly shifts nerve signal transmission, and the protocols for giving it are getting better and more specific. Technically it’s an NMDA receptor antagonist, but it affects opiate and MAO receptors too.
Remember, all meds have side effects. There is no free ride; sorry!
Most of our meds can affect judgment, memory, and perception. Ask a relative, housemate or friend to check your brainpower and personality, to see if there are effects you’re not aware of.
Avoid polypharmacy, or too many meds, because it’s a great way to create a neurochemical mess. I stop at 3 different ongoing meds, since I can’t tell what’s causing problems if I take more. I also have 3 as-needed meds, which I rarely use, unless the side-effects of the pain/nausea/wheezing are worse than the side-effects of the meds.
Last but not least, med is spelled M.E.D. which means Minimum Effective Dose. Both adjectives are equally important. It must be effective, or why are you taking it? It must be the smallest dose that really works well, because otherwise you’re dealing with the same issues mentioned in the previous points, and they get a lot worse with overmedication.
Keep in communication with your doctors about your meds. If they’re savvy, they’ll work with you to optimize your medication profile for best functioning with fewest problems.
Injections and implants: spinal root blocks, prolotherapy, spinal cord stimulators, botox injections, spinal baclofen infusions, implanted drug dispensers.
Zaps and rads: TENS (electric counter-stim blocks the nerve pain), TCM (electro-magnetically stimulates and remaps certain parts of our brain that support the disease), Calmare (a more complex electrical technology that retrains the pain signal so it eventually doesn’t restart.)
Retraining, rebraining: Multi-Disciplinary Functional Restoration/Rehab is the gold standard for treatment. Most of these programs, but not all, require participants to be narcotic-free. The puritanism I can do without, frankly, but the whole-person approach, and the enormous mental toolkit you come away with, is absolutely life-changing.PT, OT, counseling, and learning about relevant subjects from pain mechanisms to nutritional effects on pain and function to communicating effectively with those around you so everyone can do more with less effort, is simply tremendous. It used to be a shoo-in for US citizens because it got people back to work so effectively, but in the industry overall it’s more profitable to keep us sick, so now it’s harder (but still possible) to get that paid for.You have to have determination and some mental flexibility to get admitted into a program, because it’s hard work, but if you find a program that agrees with you, then it could be the single biggest change in your life.
Every time something goes under your skin, your body has a shocky/inflammatory response. It may not be noticeable, but if it is, be ready to manage it.
If you get an invasive procedure, like implants or injections, then use one of the vitamin C protocols to help ward off flares and exacerbations: 500 mg 2 to 3 times daily, for 1 to 2 weeks before the procedure and 2 to 3 months afterwards.
Talk over these different options with your doctor, if you haven’t already — increasing your current meds, using supplemental med support, trying technologies and interventions, risks and benefits.
Also, sadly, it’s important to discuss the realities of funding and insurance coverage, so that you can develop contingency plans to follow in case your hoped-for option doesn’t get approved right away.
Always leave yourself a way forward — that’s a good strategy 🙂
There is a lot that can be done, and most of us cobble together a few different things that work a bit so that, together, they add up to enough to let us … have a life 🙂