I take good care of my brain. I work hard at learning more all the time about how to support and foster it in spite of this tedious collage of illnesses. Neurology interests me — always has. Now that it’s so personal an issue, it’s positively compelling. Neurology’s very complex, and hooks into everything — fascinatingly fractal, in the way it repeats the same physiological “phrases” to very different effect in different parts of the body in response to different changes.
I’ve been wrestling with my gut this past year or so. Lately, it looks and feels like someone’s taking a bicycle pump to it and bringing it up a little more every day. When it interferes with your breathing, that’s a lot of bloat!
I’ve found the gastrointestinal (GI) system to be a bit of a trial. It’s very complex, and hooks into everything. There’s no getting away from the endless iterations of its main roles of sensing, transforming, processing, and discarding: at the intracellular level, intercellular level, endocrine level, organ level, and so on.
Some observant part of my brain notes that the same characteristics I find appealing in neurology, are the same ones I find appalling in gastroenterology.
And the gut has so much STUFF in it…
The liver parked under the ribs at one side, the spleen at the other, holding half your blood at any one time, right across the top of your abdomen;
The endless loops of squirming intestine, stretching and shifting within their blobby webs of mesentery, shoving along several pounds of food residue at any one time along its length;
Lymphatic nodes linked in constellations in the shining webs of mesentery and glistening loops of intestine, ready to respond instantly to allergens or pathogens or anything else in your GI tract that could make your body revolt;
Major vessels, the abdominal aorta and the vena cava, coursing alongside the spine, apparently apart from the mess, but branching out so thoroughly and so minutely into the organs and the mesentery that the smartest rats in science couldn’t make it through that maze;
The tenth cranial nerve, forming an intimate and instant link between your brain and your gut, linking your brain directly to the largest grouping of nerves outside your brain, the nerves that surround and penetrate your organs and your gut, embedded in and supported by that amazing net of connective and fatty tissue, the mesentery;
And let’s not even go into the endocrine system, responding minutely — at the level of individual molecules at times — to the constituents in your food, the way you feel about them, what you need them for right then, what else you’re sensing at the time, and even what time of day or year or month it is… then hooking the info back out through the nervous system, cardiovascular system, lymphatic system, and of course the gastrointestinal system.
I was sitting in my Epsom bath today, mulling this over after the battery in my e-book died. I had done the squishing of my legs and arms with the washcloth, and ran it over my neck and back and sides too, but had a terrible time making myself touch my abdomen. It felt just awful. It also felt like it was somewhat detached from me, like it was floating a couple of inches off my back and spine, simply hovering, slightly displaced, in front of the rest of my physical self. Touching it was deeply upsetting in some way, triggering a wordless revulsion.
This is not an unusual experience for CRPSers. We often feel as if the affected parts of our bodies are almost separate from us, or like they belong to someone else, and touching them is — even apart from the allodynia — a crankiness-inducing, unpleasant experience. It’s a perceptual trick the brain plays, probably part of its general effort to manage more ghastliness than it’s really set up to deal with.
One reason I do the Epsom baths (and the stretching, and the activity, and the relaxation meditations, and the aikido/tai chi/qigong, etc.) is to stay on good terms with my body. That whole self-alienation thing is just too wrong, to me — my life is always best when I’m in my skin, so to speak, whether or not my circumstances suck.
Also, to be fair, my body has done nothing wrong; it just got some of the shortest darn straws out there, and it’s doing its mighty best to manage that. It doesn’t deserve my loathing at all. So, I work to keep on good terms with it.
This is probably one reason why I’m still often functional, frequently productive, and can still walk a mile without sitting down to rest on a good day — even after 15 years with this disease on little or no medication (here’s why no CNS depressants like narcotics, here’s why minimal other meds.)
Anyway, there I was in the bath, watching my belly inflate and almost float away, even though I was Epsom bathing (which usually calms my systems down), and realizing I was finding it unbearable to touch the darn thing, even though it was practically in front of me.
I thought, “Neurology is not that hard for me. Why is gastroenterology so impenetrable? Why am I making so little headway on figuring out this stomach stuff, and dealing with so many setbacks? Why do I get these little tailspins of terror about it? What’s going on in… the second largest collection of nerves outside my brain?” I said, as the lightbulb over my head turned on.
I thought, “I’ve been having a lot of trouble with gastroenterology. But I can usually do neurology.”
And the word for the neurology of the gut, ladies and gentlemen, is neurogastroenterology. (Break it down: neuro meaning nerves, gastro meaning stomach, entero meaning inestines, ology meaning study of. Now you have it.)
I’m pretty sure I can do that. I can sure take a stab at it.
First lesson: review the vagus, a.k.a. Cranial Nerve X. It’s a doozy.
It’s been a crazy winter, even for New England. Those of you with pain syndromes know what that means: changeful weather means unstable pain neurology which means more pain and less brain.
I’m so much more stable here in other ways that I found it frustrating to be soooooo daffy. I wanted to tuck that daffiness back behind the dam I can usually hide it behind, and use the creative and practical components of my mind to drive what I show in public.
I revised my supplements a few times, and finally found a routine that does seem to stabilize things a bit better, although it’s kind of hard to tell (it’s like inspecting a crystal with the lens inside, or possibly the other way around.) I’ve stopped fiddling, and will let the test of time tell me how this regime really does.
Also, we’ve had 2 or 3 strains of flu (so far) dancing through the household. The second one was nice, because the really awful part lasted about 5 days and it had an incubation period of about 6-7, and we got it one by one; as soon as 1 person got really sick there were 2 people to take care of him or her. In one case, this meant miso and ginger soup; in another, raw garlic in mashed potatoes; in a third, goldenseal and vitamin C; in all cases, loads of homemade chicken soup and buckets of fluids.
I’m not sick of homemade chicken soup, as every pot is different, but I am *so over* herbal tea, broth, diluted juice… everything. I had a big mug of plain hot water yesterday because at least I’m not sick of it.
I find that viruses affect my brain. They have for as long as I can remember. One of the first signs of viral illness, for me, is getting cranky and forgetful all of a sudden. With all these brain issues I have now, it just turns the volume of pain, reactivity, and goofiness up to 11.
Into this brew of brainlessness, add one more element of confusion: my most expensive brain prescription, Savella, looks exactly like my cheap antihistamine, generic Zyrtec; I take them both twice daily.
You can see this coming, can’t you…
I found out a week ago that I’ve been double-dosing on Savella and underdosing on Zyrtec. (No wonder my asthma has been acting up.) That, more than the virus and sinus activity, would explain the intense dizzy spells, disembodied feelings, uncharacteristic irritability, and eerie emotional detachment from my nearest and dearest. (No medication is harmless. Now you know what an overdose of SNRI does to me.) It was a relief to know what really caused all that, but it still sucked to go through it.
So, thanks to the daffy-dam getting burst by those bugs, I blew my brain out of the water (and also blew about $150!) AND set myself and my housemates up for a few weeks of needless unpleasantness. I’m still recovering, but well enough to think coherently about it, so that’s a huge improvement.
To my morning pre-pill routine of apple (malic acid) and sunflower butter (digestible folate, minerals and anti-inflammatory oil), I now have ~1/2 cup of defrosted Boreal blueberries (intense brain food with anthocyanins and antioxidants for recovery) topped with grated aged cheddar (intense brain food with dopamine precursors and saturated fats for those nerves) during and after pills. My pills go down better, and bit by bit the fog seems to be clearing.
Now that I might be able to think my way past a soggy Kleenex, it’s time to get that “activity” thing going again… if I can remember how. There is absolutely no substitute for activity, because it balances the autonomic system, improves neurochemical stores and their behavior, and can even reduce pain, with *no negative side effects* — as long as you don’t get hurt or over-do.
I had a dream last night of dealing with broken gym equipment, and of absolutely longing for good t’ai chi instruction. Until I find it, I’ll work with what I’ve got: my class notes and a couple DVDs from my old Academy. It’ll get me started, and then we shall see.
A healthy person needs a lot less than a painie; women need a slightly higher proportion than men. Recommendations are based on healthy men. Think that over for a minute, painie women…
More and more science is discovering the link between longstanding pain disease and demyelination, that is, the protective layer of fat around certain nerves. Without that protective layer, the nerves can’t work right and rapidly get very sick and sore.
A healthy person can maintain myelination on a normal diet. That’s great for them. It’s why we call them normal.
We have a lot more demand on our myelination. We are playing a different numbers game than normal people. Normal diet is not necessarily right for us. A low-fat diet does not necessarily support myelin enough for those whose nerves are as heavily besieged as ours are.
We benefit, more than most, from staying away from poisonous fats, like hydrogenated fats and conventionally-farmed flesh foods and farmed fish. They can really push the poisons into our sensitive systems.
We need, much more than most, to get cleansing and healing oils and fats of all kinds:
– from omega-3s in fresh vegetable oils (avocados, olives, sunflowers, nuts, seeds) and wild fish (salmon, sardines, cod, menhaden fish),
– to the medium-chain fatty acids in cocoa butter and coconut, both of which are wonderful to cook with (vegetables sauteed in refined coconut oil are outstanding),
– to the naturally saturated, artery-*cleaning* fats in 100% pastured dairy (cheap source: Kerrygold butter!) and other flesh foods raised according to their genotype (scratching poultry, rooting pigs, pastured herd animals, etc.)
*Fats and oils are necessary, in the presence of ongoing nerve damage.* They provide mechanical, physiological, and anti-inflammatory support to the beleaguered nerves. Lack of adequate lipid intake can worsen the nervous system’s situation, which has knock-on effects on the metabolism, cardiac system, digestion, endocrine signalling, and so forth. The nervous system drives every system in the body; without adequate support, it can’t do a good job. Very simple.
When I first got knocked down by CRPS, I couldn’t lose the sluggish-digestion-related extra weight or improve my functional level, until I raised my intake of healthy lipids to about 2.5-3 times what the recommendations said. Once I was getting enough of these neuro-protective and anti-inflammatory ingredients, my metabolism went up, my pain and clothing-size went down, and everything got significantly better.
The temptation then is to overdo, which still helps reduce pain at the time. Half a tablespoon of grassfed butter is better than a pain pill for me. Unfortunately, it was a high-pain winter, and I used it several times a day. That created a much bigger body than I can manage, and that puts more strain on my joints and bones. I’m working on that right now. I definitely overdid the pain-reducing foods through all the activity around moving and travelling my first 6 months here. I’m about 20 pounds down, but it won’t really show for another 20.
We like to eat serendipitously — it’s natural, and harks back to when we ate whatever was around: apples, berries, tubers, mastodons, and so on. Unfortunately for me (as it is for many spoonies), I have to be very thoughtful about what I eat. As my brain gets clearer, it becomes easier.
It’s too bad, because I’d love to be thoughtless and festive about food once in awhile, but I’ll have to be content with being thoughtful and festive instead. It works better.
A dear friend is embroiled in one of those ghastly legal tangles where the vultures are rigged to win. I’m the key defense witness. This comes up later.
This whole winter, I’ve been basking — simply basking! — in the sheer delight of being safe, sheltered, warm, loved, and with as little chaos as anyone with a recent move, a complex illness, and widely scattered relationships can get. Occasionally, I’ve wondered if I’m allowed to be in such a situation, and strained my ears for the sound of the other shoe dropping… Then I do a reality check, tune in with my lovely partner and my lovely housemate/hostess, and it appears that no, it’s okay, things are right, and this is what’s right now.
My nod to the fairly relentless self-management that got me through the past decade has been an occasional effort at meditiation, a minute or three of qi gong, a few moves of t’ai chi now and then, or the occasional mood-check.
In short, diddly-squat.
In December, I lost it with a dear friend.[LINK] I did more mood-checks for awhile, a bit more meditation, maybe ten whole minutes of t’ai chi every other day for a couple weeks.
I was heartbroken at the mess I’d contributed to, but couldn’t dig up the motivation to really “do the Do”, to restart my hard-won disciplines.
Dear heavens, it was soooooo good to rest, just relax for a change, enjoy the sensation of not looking over my shoulder and not being constantly *forced* to calm sometimes-legitimate terror or possibly-reasonable panic.
It was winter. I was safe. I let my disciplines sleep.
Meanwhile, the brakes on my car[LINK] were acting up, or rather, occasionally failing to. $2,000 later, that was supposed to be fixed.
Gradually, I noticed that J was telling me, more and more often, to lower my voice: “I’m right here!” Huh. I didn’t think I was talking that loudly…
As I relaxed, other humans became more interesting and I started striking up conversations with strangers, as I used to do. They didn’t respond as well as they used to. Odd…
On social media, I found myself being snippy where I used to be sweetly witty or wryly amusing to make the same point. I backed off of my online time, because if I can’t manage myself well, I’d better not interact with anybody else who might be feeling frail. “Do no further harm” has been wired into me from way back. It’s the most basic courtesy.
I took the car back for a second brake job a few weeks ago, only $150 this time, and that seems to have taken care of the problem. So my cynicism about car dealerships remains unimpaired, thank you.
Meanwhile, there were some tellingly unpleasant procedures[LINK] which illuminated a fact I’m still failing to accept: CRPS has moved into my viscera — it has leaped out of the musculoskeletal bounds and gotten right into my core. I used to say my case was “all-body”, but that was because of the gastroparesis and subtle endocrine weirdness, which I figured was simply faulty autonomic signaling. It has definitely become much more.
I could feel every line of my intestines and the springy squashiness of my organs as the ultrasound tech noodled around on my abdomen, and the less said about the gynecological exam the better. It’s real. It’s a bed of coals in there. This finally sank right through my skull over the past few days.
Damn damn damn damn damn damn damn damn damn damn damn damn damn damn damn. With extra damn.
So, now we’re up to this week.
I spoke with the lawyer involved with the vulture case mentioned above. I went off on a tear about the duplicity and injustice involved. He finally broke through by howling my name in exactly the tone my mother used when I was getting out of hand. Once I was quiet (and abashed), he said very sweetly, “If you’re going to go on like that, you might as well hit your friend over the head with a two by four.”
Two things happened. I realized that my self-regulation was much worse than I had ever imagined; and I spent the day in a state of total exhaustion and emotional fragility, the classic signs of a massive adrenal-dump.
SIMPLY GETTING WOUND UP IS BAD FOR ME. The mere state of emotional excitement is poison to my system.
I used to know that.
I used to know when the emotional excitement was coming, and could head it off.
Nope. Caught me completely by surprise.
So, I’ve been processing all this for a few days to a few weeks now. I’m coming to some conclusions, and have a few remaining questions.
I’m pretty sure the spread into my viscera had a lot to do with the merry-go-round of the past few years.
The spread in my brain may be related, in fact it must be; however, I’m pretty sure that re-incorporating my habits of self-care and diligence can get back quite a lot of the gentle precision, sweet tact, and pleasant diplomacy I was once capable of.
So, in keeping with this revelation, I’m going to acknowledge that I’ve completed my alotted time for being on the computer and get up to go do some morning activity. Then I’ll put my feet up for a bit and lunch on brain-supporting food. After a digestion break of an hour or two, I’ll do something physical in the afternoon, including 20 minutes of t’ai chi or qi gong. After that, an hour of work, which today will consist of loading my classical collection onto my tablet. This evening, I’ll spend an hour listening to classical music, then meditate, then apply my lotions for pain and muscle spasms before bed.
There are no bloody shortcuts. None. It’s just work, and it doesn’t stop.
I’m still supremely glad to be safe and warm and loved. I just have to wrap my thick head around the fact that it doesn’t mean I’m off the hook for taking care of myself.
I’m an old ER nurse so please, trust me when I say that nobody gets a guarantee with this life. Nobody really knows what’s next, and indeed, everything CAN change in an instant. Even for the healthiest. (This is why the legislation torturing the elderly and disabled makes me livid. People who favor that legislation are poisoning their own future. Everyone who lives long enough will become disabled.)
The point is this: it ain’t over until it’s over. If you’re still breathing, you still have a life, you still have choices. If you’re still alive, you have some influence over the next moment, and the one after that, and the one after that. Only you can decide where to put your focus, for each breath of this life that is left to you.
Being aware in the midst of the hell is what capable spoonies do, and we find a bit of heaven in it whenever we can. Yes this sucks like nothing we could have imagined, and I have a crazy imagination; but I still KNOW that there is a lot more to my life than this pain, this weakness, this utter destruction of everything I thought made up my life.
Turns out that was all peripherals. When the structures of my life were utterly destroyed, I looked around at the blasted rubble that was all that remained of my old ideas of my work, my abilities, and myself. I wondered who I was.
And I realized I was the point of awareness that was doing the asking. I also realized that, without those assumptions holding me down, and despite the agony and unbearable loss, somehow I was free, I could be more simply and purely myself.
So now I’m on groups for this brutal disease, wanting to give comfort, but knowing the only really true thing I can say is, there is comfort to be had, but it’s up to us to make room for it in our lives, to push right past the pain and fog and grief to look for the rest of what this world still has to offer.
There is excitement and peace and ease and delight in this life, but we have to find ways to make room for it, to find time to notice it, even in the ongoing roar of this pain. Over time and with practice, we get better and better at the peace and the joy and the loving connections, and .. it’s not that the pain is any less, because the rocketing nausea these past few days tells me otherwise, but it doesn’t matter as much, because more important things have taken its place in the core of our lives.
Easier said than done, but it’s basically a matter of practice. It doesn’t come naturally, and nor should it, because anyone who responds to getting a leg ripped off with, “Oh, what a lovely flower!” is probably not going to survive to raise offspring.
Being frantic in the face of horrible pain is a good survival mechanism — as long as the pain subsides when it should. For those of us who live with that kind of pain, we have to learn to re-program that core survival response (!!!) and be more mindful about how we deal with life.
Find excuses to celebrate. Finished the dishes? Celebrate! Heard from a good friend? Celebrate! Is it Tuesday? Good enough reason — celebrate! It sounds trivial, but it works. It makes your brain stronger, bit by bit. Each success prepares you for more.
In the Years from Hell, when I didn’t think I’d live out the year for a number of years, I was utterly wrung out with misery, and I refused to accept constant grimness. It was intolerable, literally intolerable; if I left my thoughts to dwell in it, I’d have had to finish myself off.
I turned my attention to whatever was not misery, and sucked the juice from it.
I noticed every sparkle of light on the water, every flicker of color in the tiny wildflowers in the grass, the way trees spread and shake their branches, the caress of the air on a fine morning, the particular blend of colors in every sunrise or sunset I was up for, the way the sky and sea reflected each other in every weather.
I got to learn the habits of the birds, from the imposing night herons to the unearthly blue herons, rare goldfinches, raucous terns, fat geese, chatty ravens, and the everlasting seagulls. I noticed the weird little shrimp living in the greenery below the waterline on the docks. When I could, I got up on shore at sunrise around the equinoxes to see the incredible light-show as the San Francisco windows were lit up by the first liquid rays of the sun, a dappled bank of golden glory marching up the hill across the Bay.
I was like a seagull for joy, pouncing on every bit of it indiscriminately. Time enough for the grey grims when there was nothing else to find. I leaped on every chance to find some beauty, some moment to get lost in.
Sometimes I was disappointed: sometimes the weather soured; sometimes a friend wasn’t answering the phone; sometimes a dash of color was a piece of garbage, not a flower. (I still pick up random garbage when I’m out.)
Working to find bits of joy was probably the most important tool in getting me through, because I could use it every day and it didn’t depend on anyone else to work. Fortunately, things did eventually change, and I was there to rise with that tide.
I trained myself well. To this day, I find myself stopping and staring when I see sunlight or moonlight shining on water.
It’s the most beautiful thing in the world to me. It saved my life day after day for years, so that probably makes sense, eh?
Be greedy; work at finding beauty and joy. It’s good for you. If nothing else, it pierces the veil of pain and frustration and it reminds you that there is a larger world, one worth getting to. Your old reality may be gone, but there are aspects of the new reality worth cherishing. I hope you all find the beauties that make you stop everything, just so you can get lost in them and soak up the joy.
I have loads of advice for surgery and invasive procedures, so I might as well park it in one place. I used to be an RN and I’ve had this monster for over 15 years so I’ll share the key things I know, and others can add more about what they’ve tried or heard about 🙂
One leg of my Holy Trinity of Healing: Nutrition, Activity, Rest.
With nerve or mitochondrial diseases, antioxidant support is absolutely critical and vitamin C is the cheapest, most bio-available antioxidant. It’s very straightforward — it basically works by refreshing and rebooting the others. The vitamin C protocols for surgeries and procedures with CRPS are simple:
500 MG per dose (more than that, and especially a fragile system will get overwhelmed and throw the whole lot away)
2 to 3 doses per day (2 doses for upper limbs, 3 doses for trunk and lower limbs)
Start up to 2 weeks before surgery
Continue for 3 months (12 weeks) after surgery
Have you had your D3 levels checked? If you’re chronically ill, do so. It’s becoming clear (finally) how crucial this is and how much of it our bodies need in chronic conditions.
D3 is critical for healing, especially joint and bone healing, as well as helping our calcium stay in bones and teeth, helping our skin, and maintaining soft tissue integrity. Get that checked when you can, but if you aren’t already taking it, get started. Something is better than nothing. Raise your dose until your serum vitamin D3 is well within normal range. This is important. The test is relatively cheap and easy to get.
Speaking from decades of clinical and personal experience, I’d add that this is the time to invest in a good, food-based multivitamin and take it with breakfast and lunch every day from now to at least 3 months after your procedure. After years of home care and being a patient myself, I have found nothing — absolutely nothing! — that speeds healing and reduces complications like really good vitamins. It’s like magic. Also, some science is beginning to emerge about the value of nutrition in handling CRPS.
I get my vitamins from vitacost.com, which has wholesale prices and lightning fast shipping, or luckyvitamin.com which has one week delivery. Amazon can sometimes meet those prices, and of course they make it very easy to give them your money.
The brands I can recommend are the capsule (not tablet) forms of:
RAW Vitamin Code (what I use), a Garden of Life line
Garden of Life “My Kind” may be good; it’s new and I haven’t tried it, but its sister line is great.
NOW is normally ok, but it’s not something I’d recommend around a procedure. They’re great for the price, but not top tier. Their multis are tablets which are noticeably harder for fussy systems to handle.
For targeted supplements (Calcium, 5-HTP, DL phenylalanine, magnesium chelates, etc.) I use and recommend (as of 5/2017) these brands:
Several other food-based vitamins used to be great but they got bought and really dropped in quality as the parent company squeezed their profits.
Several very famous brands, which I’m not lawyered-up enough to mention, are an absolute waste of money — go to the library and check out the issue of Consumer Reports where they investigated those.
Basically… don’t buy anything you can get in a major pharmacy. When it comes to meds, I always suggest discussing meds with your pharmacist, but when it comes to vitamins, the brands available to them are frauds with great advertising budgets, and they aren’t allowed to say so even if they know it.
Talk this over with a chronically ill person who is a vitamin geek, if you want more recommendations. Some health food stores have good vitamin geeks on staff. Ask around.
This is based on the 12-week period that covers most procedures and most traumatic injury-healing. This is not for everyone, it’s not comprehensive, it’s just a generic brain-dump from one former RN and current chronic patient. If you’re planning to use this as a guideline, PLEASE take this into your doctor and highlight the bits that matter to you, so you can get a sanity check from the person who’s actually aware of your particular case and is guiding your care.
If your doctor expects less than 12 weeks, smile politely, bless their optimism, and plan for 12 weeks of intensive self-care as the better part of wisdom.
If your doctor expects more than 12 weeks, BELIEVE YOUR DOCTOR. If they tell you to stay in bed for a year, then the survival path and the wise thing to do is to stay in bed for a year. They simply don’t want you horizontal for any longer than strictly necessary, so take them seriously and don’t finesse it. Just don’t even go there. They’ll get you up the very minute it’s even vaguely safe.
Since spoonies are more likely than normal people to have a longer healing period, plan accordingly and mentally prepare a Plan B that includes yet another 25-50% of rehabilitation and recovery time. For each day in bed, figure it will take 1-3 days of activity to recover afterwards, depending on your basic fitness and cardiovascular tone.
It’s okay, don’t let the numbers scare you. I just button on my pig-headedness so it faces the right way, and make myself do the long, slow slog of building back up again. It’s hard work, but the time will pass anyway, and I want to be better at the end of it.
You are not a normal patient, if you already have something like CRPS. Don’t panic; there are lots of abnormal patients out there! You’re not alone. Just plan wisely.
EARLY RECOVERY PERIOD
Early recovery is a bear, but it doesn’t last long. Some things we just have to white-knuckle our way through, one breath at a time. Early recovery may be one of them. It will pass.
At this point, a certain amount of swelling is good and helpful, because it keeps the area flushed with nourishment and growth cells.
Keep your affected body part ABOVE HEART LEVEL if at all possible, to allow the “used” fluid to drain out. Your heart should be able to push the blood up that slope (dysautonomiacs and those with existing circulatory issues, watch this closely), but your body needs a gravity-assist to help it come back down. It also helps keep the pain down. Letting a healing limb hang below heart level will usually immediately increase your pain.
This is where you corral all the pillows you can get your hands on so that, during recovery, you can park that puppy up there and put your head down to lower the bar even further.
Work out a pain management policy in advance with your doctor, so you have a Plan A, B, and C for managing different levels of pain after surgery.
If you’ve had to go to the ER for pain crises before, then ask your doctor to contact the ER and arrange a patient-specific set of interventions for you in case you have an after-hours crisis after surgery. This should ideally:
Be time-limited to the post-surgical period,
Cover both pain and infection and whatever other surgery-specific complications are most likely, and
Indicate when/whether they should call your doctor/surgeon.)
This will save a whole lot of time and fuss, and would make me feel a lot safer about the post surgical period.
Not all ERs make it easy to do that, but you’d be amazed how much silliness a bit of surgeon’s bluster can cut through. The ER will find a way to capture and recall that information all right. They just need a little push sometimes.
Speaking as an old ER nurse, I felt a lot better about treating a chronic patient in crisis according to their specialist’s or surgeon’s requirements, than us having to figure out something so fraught on our own.
Pain crisis and post-surgical emergency protocols tailored to the chronically ill patient are a huge benefit to everyone involved.
There should also be a limit on how many ER visits before your surgeon gets called in, because if you need more than one (maybe 2 on the weekend) then you really need to be seen again by the surgeon on an emergency basis, since something may be wrong with the surgery.
Bones and joints
Those of you with bone and joint trauma or surgery, please be aware that the number 1 cause of non-healing bones is… using the darn things! Here’s the lowdown on fracture (and ligament) recovery:
For the first ~3-5 days, the “callus” is forming. This is the foundation of all the healing that happens after. There is no substitute. This is when there is the most swelling, and there needs to be: there isn’t much blood flow inside bones or connective tissue, so this is the best substitute. Extra hydration (to keep things moving through my tissues) and basic nourishment, featuring vitamins, antioxidants, and digestible protein, is my appropriate dietary focus.
For the next couple weeks, “knitting” is happening. The fractured ends are reaching across the nourished gap and, strand by strand, are pulling together. There’s no hurrying this process, but it’s easy enough to disrupt it, so keep staying off it. Supplementation with bio-available calcium (food-based sources are usually the easiest for the body to get hold of and integrate) with vitamin D, magnesium, and (according to some studies) boron and strontium, can be a real help with rebuilding the bone. I take phosphorus in the middle of the day, because it should not be released into my gut at the same time as calcium, because it’ll block it from being taken in. I take calcium, D, and the other bone-building supplements morning and night.
For the rest of the healing time, the bone break is turning that knitted lattice into solid bone which you will eventually be able to use normally again. I keep up the vitamin and mineral supplementation above, and, trust me, I did absolutely whatever it took to STAY OFF THAT FRACTURE until the bone had gone through its full healing cycle.
After that, it’s just rehab. That takes patience, pacing, and diligence, plus more pain that before, but normally, with the antioxidants and hydration and pacing, it does pass and the bone and muscle are all right at the end of it.
Ligaments take time. They don’t naturally have much blood supply, so they don’t heal quickly. However, with time, nutrition, diligence, and with moving enough to provide as much blood flow to surrounding tissues as your condition permits, these will normally come back in time too. Remember to go easy on that joint’s over-flexion and strain for a couple of years, because it won’t have the old elastic strength for some time.
Organ surgery and trauma
Abdominal surgery usually requires a coughing pillow, to protect healing and allow you to cough and clear your lungs without hurting yourself. (See the part on scar management.) The nurses should set you up with one, but any small, very firm pillow — or a bathtowel folded and taped into shape — will do the job.
Post surgical care for abdominal surgery boils down to:
Keeping your lungs working well. If you can’t breathe well, then you can’t do well. Simple as that.
Keeping your drains — natural and surgical — as clear as possible. (Tips: farts are good! Poop is great! Urine is the key to life!)
Keep moving in small, frequent bursts, so you heal faster — and to help with the previous bullet point.
And, for us painiacs, we add:
Managing pain, so the other stuff (breathing, excreting, moving) is more manageable in turn, and we don’t come out of it worse than when we went in.
You will be discharged with specific instructions about food, fluid, medications, antibiotics, wound care, and so on. FOLLOW THEM.
I know — antibiotics suck and it takes weeks of probiotics and soluble fiber and maybe Senakot to get our guts back in shape. However, the pathogens that can grow in there are far, far worse; finish your antibiotics and kill them dead.Then take the time to rebuild your gut.
I’d love to be able to say otherwise, but that’s the way it is these days; we as a society have to stop creating resistant organisms, and that starts with the ones we, as patients, treat in ourselves.
FIRST 6 WEEKS
The first 6 weeks is the “knitting” part, or, in joint replacement, the part where the bones bind onto the joint insert and make it part of your body.
Keep a close eye on your surgical area for signs of infection or rejection. Be sure your surgeon discusses this in advance so you’re prepared to take the right meds (might be as simple as Benadryl and Advil) at THE FIRST sign of trouble.
For these 6 weeks, the bone care and the skin/nerve care diverge.
With bone fractures or bone surgeries, NO STRAINING OR BEARING WEIGHT on that part. Do your prescribed physiotherapy if you have any, but don’t go *one ounce* over the line. Pushing it now is the surest way to screw up your healing and have a much bigger and longer-lasting problem.
Just stay completely off the darn thing, ok? Doesn’t matter what it takes.
I’m speaking as someone who crawled to the bathroom on 3 CRPSy limbs (think walking on hands and knees over live coals with hot electric wires sticking out of them, no kidding), 5-6 times a day, for this entire length of time, due to a broken foot. It sucked, but I did it. It was a nightmare and I’d rather shoot myself in the head than go through it again, but I did it, because that’s what it takes to get the bone to knit.
STAY OFF IT. Seriously. Just STAY OFF IT. Figure out how to make that happen, for 6 (in some cases, 8) whole weeks. The time will pass whatever you do, but you’d rather have one less major problem at the end of it, right?
Soft Tissue and Scarring
I scar quickly. This used to be a good thing.
Most scar tissue is laid down in the first 12 weeks, and 50% of that is laid down in the first … I forget.. 2 weeks, or 4? Like I said, my healing rate is odd, so I’m not sure what the usual numbers are.
The first stage of scarring needs to happen as undisturbed as possible, so your tissues can be closed up and the integrity of skin and organs and so forth can be maintained. However, after the first stage (which is when the surgical splints come off), it’s time to start managing the scarring, so that the tissue comes back as close to normal as possible.
Scar tissue is more brittle than regular tissue, especially if left to its own devices. If scar tissue is managed correctly, 3 things will happen:
There will be minimal brittle scar tissue, with minimal risk of subsequent tearing and re-injury.
Regular tissue will grow in and restore normal function, circulation, and flexibility, leaving only a little brittle scar tissue.
Underlying structures, like nerves,vessels, and ligaments, will not be trapped in the scar tissue, so they can continue to function normally.
If scar tissue gets out of hand, those good things don’t happen. And then you have more problems: tearing and re-injury, stiffness and limitations, reduced function in that body part, or, as in my case, nerves and other structures getting completely tied up and trapped in scar tissue (in record time.) Any of these is a whole new set of problems with added complications waiting to pile on.
Some Occupational and Physical Therapists specialize in scar management. Stretching, gentle massage, deeper massage after a certain length of time, silicon pads, heat therapy, bead therapy — they have tons of good tricks up their sleeves.
Case study: Me
I had come out of the post-surgical splint with 4 degrees of motion in my wrist. (That’s not a typo. Check that on a protractor.) Because I was still in the acute-healing phase, the scar tissue was being laid down faster than we could manage it, and if we didn’t have substantial improvement by Week 8 after surgery, I was looking at painful splints and possibly more surgery to loosen up my wrist/forearm so I could use it again.
A warm pack and pain meds, followed in half an hour by diligent massage and stretching for 10 to 20 minutes, three to five times a day, with a silicone pad on it otherwise, was my routine for over a month. I watched a lot of movies to distract from the horrible pain and keep going, because I couldn’t take narcotics — they had hospitalized me with life-threatening side effects.
That’s probably what sealed my fate with CRPS: ineffective and even toxic post-surgical pain control followed by months of brutal rehab with continuing ineffective pain control. We didn’t have a Vitamin C Protocol for hand surgery then, so I didn’t know to take additional antioxidants, the one thing shown to reduce post-surgical CRPS.
Sure wish I’d known that then! It’s so simple, so cheap, so effective!
My wrist has never totally regained all its flexibility, but it used to be freakishly flexible, so it’s technically all right now.
The caution and care you take in these first six weeks will pay off HUGELY. Put your natural stubbornness and self-sufficiency (which most spoonies have a LOT of) in the service of your healing for a month and a half, ok? 🙂
SECOND 6 WEEKS
Now, if things have callused well and knitted properly, the second half of the “12-week healing circus” gets more interesting. This is when you gently and persistently put that part of your body back in service, and remind the nerves there that their job is not to be hysterical and overly dramatic, but to report only/exactly what’s really there. Seriously. It’s a bit like self hypnosis. One great technique is in the “Mental Rehearsal” heading.
Another is a dry version of the Epsom baths described here. Keep in mind that you can use a washcloth or soft cloth dunked in Epsom solution instead of taking a bath, in order to benefit from the de-programming and re-programming you can do on your body in this way.
This period is crucial because that’s when 80-90% of the healing is completed. So, this is why the vitamin protocols, physiotherapy, and medical care really focus on that period. Problems are best found early in this period, so they can be fixed, mitigated, or worked around.
It’s not short, but it is finite!
PHYSIOTHERAPY AND REHABILITATION
Do what you can to get the best rehab possible, and be as communicative and involved as you can. Remember, whether you like your rehab professionals personally is not the point; it’s simply a question of whether you can communicate with them and get the care that you need. If you can’t communicate with them despite your best efforts, change therapists. There has to be 2-way feedback — especially with the tricky cases that we always are — or else it’s not a therapeutic situation.
Retrain the Pain
There are several ways to manage how the CRPS brain mis-handles the new pain information. These are different ways of hacking into the ways that the disease grabs the part of your brain that corresponds to the part of your body that CRPS wants to climb into.
Naturally, there are no guarantees, but mental-plasticity techniques can be hugely helpful.
When you are using that limb in the rehab stage, mentally practice the motion first, playing it out painlessly in your mind. Imagine the whole motion going perfectly comfortably. Then do the motion. If this doesn’t go well, work with your physical therapist on details of the technique (there are several ways to conduct the imaginary and real movements) and figure out what works best for you. Persistence is key in rehab.
The point is to make the movement you mentally practice as realistic as possible, as much like the real motion as possible, and have it be painless and comfortable in your mind when you practice it. Keep doing the mental rehearsal before the movement, and refine the mental rehearsal until you can predict the shape of your movements fairly exactly. This was one of the best tricks I ever learned for de-programming my body’s pain responses and getting back a TON of function.
If done wrong, it can have pretty much the opposite effect, so go carefully and find good guidance if it’s not easy for you.
This is kind of like acting out a metaphor, and that metaphor communicates with the body-mapping parts of the brain in a way it’s hard for them to ignore.
I find it makes a big difference if I approach all this with an attitude of parental authority toward my own body. I can’t control my body completely, just as a parent can’t completely control a child, who really is a separate entity; but a parent can exert a great deal of influence, when they do so with tones of loving, generous, insistent declaration.
“This is best for you, and I know that, and what happens to you matters, so do this and we’ll go from there.”
For paraesthesias — the garbage-can term meaning “weird skin sensations”, including numbness, tingling, or allodynia — I simply stroke from a non-weird area into the weird area.
I pay attention while I’m doing that, mentally pushing the non-weirdness into the weird area, and telling the weird area to pay attention because this is what “normal” feels like and “normal” is the appropriate way to feel. Kindly persistence is key.
Every now and then, I hear Jim Carrey’s character talking to his dog Milo. This clip isn’t in English, but somehow the meaning comes through in the first minute: “Come here, Milo… Come on, there’s a good boy… You can do it… PUT SOME EFFORT INTO IT!”
PAIN REHABILITATION can take longer than 12 weeks! Keep at it
Be patient. Be diligent. Above all, don’t give up. It just takes time (months or years in some cases) but it can usually be done, and the time will pass either way so you might as well have something to show for it.
Keep working on it. Mental rehearsal, brushing, self-hypnosis, calming meditation, Epsom baths, vitamins, etc. It all helps. Keep at it.
If you don’t already have a good pain psychologist, this is the time to get that referral. Pain psychologists have special training around understanding how pain impacts the brain, and how this, in turn, affects our feelings and behavior, and what we can do about that. Most importantly, they have special training about how to use the characteristics of the brain to better our frames of mind under varying stresses. It’s pretty brilliant.
There is a ton of good science on how we can learn to use our minds to improve our lives, and pain psychologists are the ones trained in how to identify our strengths and struggles and train us as individuals in using the tools that can benefit us the best.
NUTS-AND-BOLTS PREPARATION FOR PROCEDURES AND SURGERIES
Basic activities of life have to go on… So, plan ahead, clear the decks for action, and prepare some things ahead of time so that you have less to flail about when the time comes.
You need to be able to get a meal with minimum effort for a couple of weeks. Before surgery, stock up on easy food. For me at my surgeries, that was apples and nut butter, nitrate-free cold cuts and veggie chips, romaine lettuce and Cabot Extra Sharp cheddar — which I slice and bag up ahead of time. Trader Joe’s and good grocery stores often have pre-made wraps, soups & salads, and good frozen meals. For normal people with fewer allergies, it’s probably instant soups and microwaveable food. Whatever works for you. As long as you’re taking your vitamins, packaged food may be a reasonable compromise within your limits.
Say it with me: “Do what works for you.”
Clean clothes and sheets
Also, catch up on laundry and get rid of any “stupid problems” around the house — a door that makes you fight with it, a sink stopper that doesn’t work, a rug that always catches your foot. Fix the door, pull out the broken stopper and replace it with one from the dollar store, and get rid of the rug. I hate those kinds of rugs. (Old trauma nurse, remember.)
Making a “day nest”
If you don’t already have one, set up a “day nest” at home. It’s absolutely essential to get out of bed every day if possible, because it’s much better for your brain, but for awhile you won’t be up to much more. Make a comfortable place to lounge and watch tv, with your body-part up, some kind of toileting you can get to, and your comfort kit handy (books, comics, hot water bottle, meds, snacks, etc.) for hours at a time.
Personal hygeine (sigh)
You’ll need to waterproof that body part for bathing and showering. You may need back scrubbers and other reaching aids to get clean, too. At certain times, a wet washcloth may be the best you can do, so make it easy to reach the washcloth, soap, and a manageable towel.
Try to work this out ahead of time. Give yourself slack for different levels of ability: washcloth while sitting on the toilet, soaking in the bath with the body part perched on the rim, showering in a chair or stool, or standing under the running water. Remember to figure out how to clean and manage your hair.
Having this mapped out ahead of time simplifies the hygeine. For another, it’s powerfully healing to know that you’re taking good care of yourself.
The first few days are… special
I find that the first 2-3 days are too bewildering and painful to handle alone. After that, I’d begun to learn how to change position, dress, and wipe myself adequately (hey, that’s important!) and the IV site had healed.
If you’re on your own normally, try to find a helpful friend to stay with (or ask them to stay with you) for the first 2-3 days. All you need is someone to remind you that there’s life outside this, to pass your meds and a tissue, and, if necessary, call an ambulance to get you to the ER. Simple enough.
If you’re facing surgery or invasive procedures or a major injury, you’ve got a tough gig ahead of you, but you can manage it. I’d be wetting myself with anxiety if I had to face that again, but I’d do all this stuff anyway because I know it works.
Now, having said that, this is the part where I have to insert the reminder that I am not a doctor, I have not examined my readers, and I have no business making diagnoses or conducting treatments on them.
Since I’m a pretty straightforward old cuss, I’ll add that it’s your own body anyway and you have to do your own homework, follow your own inner promptings, and take responsibility for the choices you make accordingly.
May all things go well for you, especially recovery.
I tell you from personal experience, it takes time and study and a lot of experimenting, but many have done it and I did for years.
I found that nutrition, activity/rest, and mental hygiene were the Magic Triumvirate.
Nutrition has a huge effect on what happens in our cells.
Activity re-regulates the whole CNS, while our bodies require rest and pacing to let the activity happen.
Mental hygeine encompasses meditation (sitting, yoga, tai chi, qi gong, relaxation exercises), cognitive behavioral tools (such as noticing tense postures and re-grounding and releasing them, playing chamber music or soft rock or soft jazz to calm the brain down, using lenses and mirrors to remap the brain’s crazy ideas about our bodies, biofeedback), and the art of distraction (absorbing books/shows, phone calls with friends, coloring abstract designs, doing something you enjoy, doing something productive for the neurotransmitter-boosting pat on the back you give yourself for doing it)…. all very important and useful stuff.
Learning to plug all this into daily life is a monumental task and it takes time to learn what YOU need to do, but the time will pass anyway and crps is still a full-time gig anyway, so you might as well be healthier and bether informed.
If you don’t mind one strenuous suggestion: before you take out anything, be sure you’ve plugged in something else that already helps. So, for instance, I got healthy fats (for neuroprotection) on board before I cut additives and phosphoric acid out of my diet. Those substances are neurologically addictive (“have a cola and a smile!”) and I knew from seeing people deprived of preservatives and sodas suddenly, that there’d be an unhappy withdrawal period. Once I had the coconut oil for cooking veggies, the grass-fed butter, and the olive oil & avocados going, I hardly noticed the change and didn’t even want colas or packaged food after a few weeks.
Again from experience, I suggest a combination of liver cleansing food (parsley, milk thistle, avocado hearts, dandelion, cilantro) and phosphorus-rich food (lecithin especially, mixed nuts) to calm the shift off of medications.
The liver uses phosphorus to process meds, in a process called (not surprisingly) phosphorylation. Providing plenty of raw material for phosphorylation really smoothes out medication issues for me. Lecithin has a mild, slightly buttery taste, the granules are easy to clean up after, and it makes fats (neuroprotection, remember) a lot easier on my sulky digestion.
Also tons of water, seltzer, whatever fluids you can get in. Most modern human central nervous systems are chronically dehydrated, which makes crap build up and that increases inflammatory response and pain. The bathroom breaks are time well spent: I need to get up and move a little anyway.
I blog some of my stuff here at livinganyway.com. I also recommend www.tamingthebeast.ca since she manages mast cell disease (massive drug allergies) on top of crps.
I use lemon balm (Melissa officinalis) extract for flares, and it is great for nerve inflammation. It’s been used for shingles and cold sores for millenia.
Clove oil — well diluted! — is outstanding for nerve pain.
Emu oil is good for almost every kind of pain, and absorbs amazingly. I use it by the drop, it’s so effective, and I add a bit of clove oil for good measure.
I’d add st johns wort oil as well, if I had any, because it does something remarkable to neurotransmission that smoothes out the pain.
I take neurotransmitter precursors twice daily, and they’ve been found to suppress pain signals at the spinal nerve root: 5-HTP and D,L Phenylalanine.
I also take st johns wort. I used to use it instead of neurotransmitter meds like SSRIs, SNRIs, tricyclics, etc, but now I take it alongside and I find I get better results with fewer side effects.
Epsom salt baths help with flares, pain, dysautonomia, all kinds of yuckiness. I have to be up to a bath, but when I am, it’s wonderful.
I stick to whole foods with almost no grains, healthy fats and oils, quality meat and eggs daily but not hugely, starch from root veg and stalks. I have to hit the roadside stands, membership stores, and offbrand markets, because this stuff costs rather a lot in the supermarket, but this is a great area for organic and whole food.
I did without meds for years and I’m glad I did. For someone who’s had this disease, with several complications, for 15 years, I’m in phenomenally good shape. Now I take a wee bit of an SSRI and an SNRI, and antihistamines to manage my own mast cell histrionics, and with everything together, my pain is roughly 90% managed, sensory sensitivity is down to a functional level, stamina allows me to be up for most of the day, and my dysautonomia probably 50% managed. Sadly, still not enough for a job or much of a social life, but, fortunately, I did finally get disability income and many of my friends are able to come to me 🙂
My desk setup is nonexistent and much of it still buried in unpacking. I wish I’d been writing some of the wonderful blog ideas that have passed through, but I didn’t. Rather than trying to reconstruct them from addled hindsight, I’ll just go on as if I had a whole nest of posts to plop this one into, and go on from here.
As my desk situation indicates, I still feel perched, rather than settled. I’m going to have to find a rental in the spring and then start looking for a miraculously good deal on a house to buy after that, so it’s hard to unpack all the way.
Moreover, California is still extending opportunistic tendrils into our wallets, task lists, and attention.
And then there are the periodic health crises: a bit of allergy exposure here, a bit of partner’s chest pain there, a sprained wrist from me overdoing, a sprained back from him overdoing… you know. Stuff.
Oh, and the holidays, with a trip and gifties to prepare, mostly for people I haven’t seen for over a decade… no pressure.
These aren’t excuses, they’re reasons. I don’t really believe in excuses; it’s largely an irrelevant concept. It’s for an injured party to decide if I’m excused, not me, so “offering an excuse” just doesn’t make sense. I have reasons, but so does everyone.
Here’s the thing I feel a need to mention my reasons for:
I’ve let my self-disciplines go. T’ai chi, qigong, meditation, reiki, relaxation exercises, stretching, even listening to chamber music — I think about them, but I don’t do them. I still have my morning routine, or at least half of it… if that… OK, yeah, my self-disciplines are pretty much out the window.
Like medication, meditation only works if you use it.
After weeks, actually months, of coping and managing with (and concealing, because that’s what chronically ill people do) my rising instability and neural chaos, I’ve finally started skidding off the cliff.
As for the effect… I’m trying to come up with a good image.
Imagine a patch of sea. I’m in a well-rigged little sailboat, noodling along in a fair wind.
The oil of willpower is constantly sprinkled on the water’s surface, keeping it smooth and flat, easy to sail along on.
Underneath, the weedy patches pluck at the propeller and keel, the barnacles grow restive and start plucking back, the creatures swimming underneath get bigger and more voracious, and then they get big enough to break the surface now and then.
More oil! Keep sailing!
Those surface-breaking tiddlers get chased off by the real mondo beasts. The boat is getting sprayed by the monsters breeching.
Everything’s fine, I’m too busy to pay attention, la la la la la I’m not listening!
Also, the wind is acting up. The boom is starting to swing across at head-height.
Just a little farther now! More oil! /BOOM/ It’s OK, I’m fine, just a flesh wound!
Unbeknownst to me (since I’ve got the radio turned off, because I’m not listening), there was a string of earthquakes.
Since Banda Aceh and the meltdown at Fukijima, we’ve all learned about how earhquakes make waves. The shock of the quake trundles happily along the ocean floor until the ocean floor rises towards the shore. Then it sucks the landward water into itself and brings it all back as a tsunami.
If you’re afloat and listening, you move out to deep water, sail over the bump without losing stability, and you’re fine. If not… cue exciting sound track and hire George Clooney for the (possibly race- and gender-inappropriate) lead in another disaster movie.
There was a wave and I wasn’t in deep water. I didn’t handle it well; I was dysregulated and chaotic for days. Days. I was so dysregulated and chaotic I didn’t even see that that’s what I was, until it was pointed out to me — by the person who’d just gotten butt-kicked by an earthquake. That is not a fair burden to put on someone who’s already having trouble.
I have a personal meme about being good to friends. This is important for us spoonies (as chronically ill people sometimes call themselves.) My disease treats me like crap, but that isn’t a license for me to treat others like crap.
People who are protected from the true impact of this illness need to not get it at close range, or they run away (understandably) feeling as if they just got burned.
People who have this illness can understand a lot more, but are able to do much less.
I have to communicate appropriately. That’s my job in each relationship.
Basically, humans are emotionally fragile creatures and — whether I want to be judgmental about it or not — I can either respect that, keep the worst of my crap to myself, and have good relationships; or I can expect them to be as tough as me and to do so on my schedule, neglecting that they have to be as tough as themselves on their own schedule, and wind up isolated. Because I’m human too, I’m emotionally fragile enough that being isolated sucks.
I absolutely dropped my backlog of frustration and pain and rage on someone who was about the last to ever deserve it. That’s quite a breach of trust.
I stopped taking care of myself. As a result, I fkdup and hurt someone else. Now I have to own up (did that), figure it out (working on it), and do what needs to be done (re-integrate my practices) to prevent it ever happening again (and find a way to cue myself before I get bad: the missing piece.)
At that point, I’m allowed to make amends. It’s another tweak of my logic that I can’t make amends until I’m sure I won’t make the same mistake.
Being a spoonie is hard work. Part of that work is these time-intensive disciplines that seem like “oh how nice, you’re so cool, I wish I could do that” — but, as it turns out, are really not optional if I want to function.
BTW, do you notice how people excuse themselves by saying, “I wish I could do that”? I listen for these words coming out of my own mouth. It’s a sure flag that I’m throwing the baby out with the bathwater. Oh, a little extra effort up front to save a whole lot of trouble later on? H’mmm…
We all screw up at times. The consequences for spoonies can be life-threatening, if the wrong relationship gets ruined. Handling these issues is part of “living anyway” in the face of profound disease. It’s harder to figure out and harder to repair the damage, because of the nature of central nervous system diseases. So, dear reader, I’ll try to stay on the right side of the line between washing dirty laundry and discussing a common issue here.
We often tell each other, “You can’t take care of others if you don’t take care of yourself.” That’s a tough one for caregiver personalities; we’d much rather take care of others than ourselves. However, it was through failing to take care of myself that I actively hurt another. That is a whole different octave of problem. I guess I’d better learn this lesson.
This is a lot of thinking for a breached boat. I can do it, though. I must. I’m still a long way from harbor.
It’s not easy to find providers who can pay attention to the people in front of them and think their way out of a wet paper bag at the best of times, especially in the increasingly money-oriented and depersonalized model of care that grows and spreads out from the US like a bad rash.
When you’re looking for a specialist in a rare disease like CRPS, it’s even more interesting.
Sources for lists of providers
The online info-and-education site, RSDS.org, can send you a list of providers if you write to them and ask: http://rsds.org/finding-a-crps-specialist/. More usefully, though, they also provide a list of links to medical-specialist licensing board sites, where you can find specialists in your region.
I checked these out.
American Board of Pain Medicine
Enter your city, state/province, and country in the fields provided; choose your target category (Anaesthesiology, Physical Medicine & Rehab, Neurology, Psychiatry, etc.) to find someone board-certified in that specialty; and click Find. http://imis.abpm.org/abpmimis/abpm/directory.aspx
Of course, if your insurance provider has a specific list of providers they’re willing to pay for, you may have to start with the list they give you. That simplifies the process initially.
Using online reviews rationally
Having found a list of specialists, I strongly recommend reading lots of reviews to find the one who suits you the best.
That will be different for different people, of course, because we have different bodies and we each have found that certain kinds of things work best for us; doctors, likewise, have different brains and are inclined to use a distinctive set of treatments, believing that that is what’s best.
So, if possible, we probably want to find a doctor whose approach and treatments bear some resemblance to our own.
In addition to that, I recommend finding someone with over a decade of practice. There is no substitute for experience. It’s the only way that judgment — that subtle sense that takes in a lot of info subconsciously to arrive faster at a better result — can develop.
Excellence takes time. Extensive research on excellence indicates that 10 years is the functional minimum to develop it.
Personally, I tend to go for 25-30 years. I know that I require a collegial relationship with my doctor, and it takes an unusual degree of poise for most specialists to handle that gracefully. Also, I really need to be treated by someone who knows more than I do, and the longer I have this, the rarer that is….
Once I get a list of specialists, it’s pretty easy to screen out the majority on the first pass, on the basis of inexperience or irrelevant experience. Some of these review sites, like ratemds.com and healthgrades.com, show the education, experience, rewards, and publication highlights for each physician. (All of this is public info.) These data make a great screening tool.
I only need to do in-depth review reading for less than a dozen doctors, usually. I don’t feel comfortable with less than 4 review sites for each doc I take seriously. Each site has its own slant, so I prefer to triangulate on each provider’s patient relationships from different sites.
Caveat emptor: It’s important to look at review sites with my brain plugged in and working. We know that some reviews are posted malevolently, and that everyone — including doctors — has a bad day. We also know that everyone — including doctors — has got their blind spots. That’s fine. I’m looking for PATTERNS, not exceptional instances.
For instance, one memorable doc treated beautiful people very well, and everyone else very dismissively. When his attention was engaged (which, for him, was about looks), he was intelligent, appropriate, and did outstanding work; these are valuable traits. Therefore, I’d recommend him (with an explanation), to friends who meet the age/BMI criteria in his sweet spot, because good care is good care — but I’d emphatically warn against him to the rest!
Last time, I wound up choosing a doctor who had a super high proportion of “he listens to me” remarks, had over 30 years of practice, had started in psychiatry (which indicated a more human-oriented and less problem-oriented approach, I thought), and did charity work for pain in his own time. That turned out extremely well. I wish I could get him to move across the country now, because I hate having to start the search all over again.
Now that I’ve got all my links in one place, it’ll be a lot easier.
Recap of my process
1. Create a list of potential providers:
Choose an appropriate specialty, such as..
anaesthesiology (training is oriented towards meds and procedures)
physical medicine and rehab (training is oriented toward physiotherapy and mental discipline)
psychiatry (training is oriented toward neurochemistry and life habits)
Choose an appropriate level of experience,with 10 years as my recommended minimum.
Make a comprehensive list of possibilities in your commute distance, using one of the board-certification bodies above or the list your insurance company provides you with.
2. Narrow it down to what makes sense:
First, quick pass through the list: screen for appropriate specialty (you’d be amazed at what winds up in those lists) and experience.
Second pass through the list: Start looking at online reviews. Cross out those who do a great job of pissing off their patients. Again, you’d be amazed… Every single doc gets a certain number of “he treated me like crap! I’ve never been so insulted in my life!” remarks, so I don’t notice a few of those, but when they predominate, out that doctor goes.
Third pass through the list: I look at 3-4 sites containing online reviews for the surprisingly short list of names I’ve got left. Some reviews are cut-and-pasted across sites, so I count those only once. This is where a pattern of personalities and approaches comes across.
Final triangulation: These impressions are easy enough to check by looking at the doctor’s web presence — activities they’re involved in, published work, what they do in their spare time (I find doing disease-related charities more compelling than golf club or Rotarian memberships, for instance), and I’m quickly down to 1 or 2 practitioners.
From there it’s a very simple choice.
3. Pick one.
If it’s a hard choice, I’ll call the office and ask to talk to the nurse. The staff a doctor hires have an awful lot to do with my experience there, so, by the time I know the doc has met my other criteria, incompetent or stupid staff is a perfectly reasonable deal-breaker.
I’m willing and able to travel quite a distance for a good provider, and this makes it a lot easier for me to find one. I’m deeply indebted to my partner for being so willing and happy to do so much driving on my behalf. It makes an enormous difference, and I’m suitably grateful.
I hope you all can find the right doctor where you need one. There is simply no substitute for good and appropriate care.
Um, I’m embarrassed here, but WordPress decided I wanted to publish this instead of keeping it as a draft, despite my (I thought) clear button-clicking. And after all this work, naturally, I’m too clobbered to figure out how to back out and fix that. So I won’t advertise this until it’s done. Meanwhile, enjoy reading the beta version, if you want…
// consider splitting into 2 or 3
// sanity check
Don’t abandon yourself
As individuals and as a group, we have far too much experience of being abandoned by those who are supposed to care for us and those who, we believed, cared about us. Sooner or later, those of us with invisible disabilities in general, and disruptive neurological and pain diseases particularly, *really* learn who our friends and allies *truly* are — if we have any at all. It’s a brutal lesson.
On top of this, those of us who survive the initial assaults of the disease — not to mention the staggering rounds of betrayals and abandonments — tend to be rather driven. If we weren’t when we started, we sure are by the time we get through those ghastly shivarees. We can keep going by will alone, without the muscle, the memory, or the means to do so. We do it anyway.
In the long run, this is a skill that needs to be used selectively. It gets us through the pinches and punches of life, but we have to learn when to turn that off and take care of ourselves, as we wish others had taken care of us.
The trickiest lesson of all may be, how not to abandon ourselves.
It’s not that hard. It’s difficult, but it’s not hard. The trick is learning to walk fine lines, using our judgment instead of our impulses — which are a LOT more impulsive because of the neurochemistry of relentless pain.
The deck is stacked against us. But we are still in the game.
Here are some notes on the distinctions we have to learn, even when our brains can’t cooperate. The fact that we get as far as we do is astounding, when you think about it.
H/The difference between comfort and care
There are habitual comforts that belonged to our pre-disease life, and care that belongs to the present. I’ve found that care itself has become very comforting, so the work of leaving behind old comforts that suddenly came with a very high price has turned out to be well worth the years of effort. (I rarely even want pastries any more, which is just as well, considering all the problems they trigger in this body… but Epsom baths are wonderful, and berries are delicious!)
H/The difference between rest and sluggishness
There are four pillars to self-care for CRPS and, indeed, most pain diseases: activity, rest, nutrition, and distraction.
We have GOT to move. We have GOT to rest. Neither is optional. But the pain makes it hard to start moving, and once you get comfortable… oh, dear heavens, why get up when it just makes things hurt again? Initiating movement is awful at the time, but maintaining flow of blood and lymph is absolutely crucial for *ongoing* pain control and keeping the damage down.
Putting your feet up between tasks, taking it easy the day before and the day after an appointment or event, and [LINK] having good sleep habits[/] is resting. Resting is good. Resting is helpful. Resting makes you stronger.
H/The difference between doing and overdoing — and undoing
One great advantage that kids with CRPS have is parents. Parents push you when you can’t push yourself. It’s their job. I suspect that two reasons why kids have a better chance at remission is that, for one thing, they have a structured daily routine, which reduces the CNS chaos; and, for another, they have parents helping and coaching and maybe crying with them as they push through the pain to keep moving and
get their activity in, as well as their rest.
One great disadvantage that adults have is less resilience. If we overdo, our bodies go straight to Hell — go to Hell, go directly to Hell, do not pass Go, do not collect $200 (to paraphrase the game Monopoly.)
At worst, we can create a spread or an intensifying of CRPS if we push ourselves too hard, eat the wrong thing, have a procedure, break a bone. We can, by one misjudgment or accident, find ourselves far more disabled and agonized and in need than we already were. Which is unimaginable to a healthy person in the first place.
And yet, we must move… While exhibiting good judgment… With a brain that hasn’t got much judgment-juice at the best of times.
No, it’s not fair! It’s CRPS!
H/The difference between pushing and pacing
Pacing is key. Pacing is how I built up from being able to walk just 100 feet to a couple of miles. Pushing is how I got CRPS in the first place, and it’s insane to do the same thing in the hope of getting different results.
Learning how to pace, when you’re used to pushing, is relentlessly frustrating… but it *can* be done! For me, it’s usually a question of turning my stubbornness towards my own service, instead of the service of my frustration, ADD-driven fixation, or impulsiveness.
Actually, come to think of it, it’s really a question of *remembering* to do that, prioritizing accordingly, and following through on the decision. Easier said than done. This brain doesn’t have much judgment-juice, remember? It’s unspeakably weird to feel myself make the choice to stop doing whatever task I’ve gotten sucked into, realize it’s a good idea, find that I’m totally unable to make the switch, and — here’s the kicker — hear myself say in my head, “I haven’t got enough dopamine,” and simply realize I’m going to be in trouble and that’s all there is to it.
H/The difference between a bad decision, the end of life as you know it, and being dead.
Normally, only one of these is unrecoverable. Remember that. Being dead eliminates aaaaaaaaall your future options. Every last one. This is why I say, with Barrie Rosen, that *only suicide* is failure; everything else is just tactics.
Bad decisions have consequences, as we know better than most. We are often underfunded in what it takes to make those decisions, as my example in the previous section indicates. Bad decisions suck, they’re often costly, and it’s not like we can always help making them, adding a layer of humiliation that isn’t fun.
But they aren’t the end of the world. Not usually. They rarely result in our deaths. Being able to manage or mitigate the consequences and move on with a minimum of fuss is a hugely valuable skill. This brings us to our next topic.
H/The difference between being irresponsible, and forgiving yourself for a mistake.
Forgiving ourselves is key. The neurochemistry of judgment and decision-making takes heavy damage from the neurochemistry of pain *and* the particular neurological re-mapping and re-wiring of CRPS.
That’s not fair!
Would you dis someone with no legs because they couldn’t climb a mountain? No, of course not. You’d be much more likely to offer to help them get their chair up to where they can get a better view.
Between our greater likelihood of dropping a brick, so to speak, and the incredibly high price we pay for every mistake, being able to forgive ourselves is essential to keeping some perspective and keeping ourselves going.
Not forgiving ourselves actually leaves us with *less* judgment-juice (otherwise known as dopamine.) Being critical is hard work, neurologically speaking. Our brains are already overtaxed, in every possible sense of the word; do we really need to strip still more dopamine from this system and work the pain pathways even harder? Probably not, eh?
Being irresponsible boils down to surrendering your own agency. Agency, in this case, means being the active force in your own life. Whose body is it? Yours. Who is it who has this pain and all that goes with it? You. Who is responsible for learning how to manage this body? Who is it who has to find the right treatment and negotiate usefully with your providers? One guess…
Doctors spend a decade just being trained to treat this disease. We don’t have that luxury, even though we have to depend on them to get the care. Since it shows up uniquely in each one of us, we have to become our own best specialists. To quote Ojocion Ingram, a passive patient is a dead patient.
While modern conventional medicine does not take kindly to patients who drive their own care, there’s a reason for that: modern conventional medicine was not designed to create healthy patients, it was designed to create healthy profits. The system does not have your best interests at heart. It’s up to you to manage the system to serve your needs to the extent that it can… and then to find ways to stretch it a little further.
Although others may help us (and isn’t it wonderful when they do?) the final decisions are ours, for better or worse. The law still mostly respects that, if only because it shifts responsibility off the “health care” system.
H/The difference between inner wisdom and inner chaos
I recently lost a friend with CRPS who released her agency to her surgeon, for very logical reasons, but very much against her inner voice. Her voice is now silenced, and we miss her dreadfully.
This raises an interesting conundrum: with or without adequate brain-juice, we have to find ways to make decisions which can have consequences up to, and including, death. Is the logical decision the right one? Or should we listen to our inner voice, even if we can’t find logical reasons to do so? Is it inner wisdom, or yet another anxiety attack? How can we know?
I’m an old triage nurse. I used to say, always go with that inner voice. I’ve seen it be right more often than the best of doctors. There is something inside us that knows more than we can possibly perceive. Sadly, we can’t always hear it clearly, especially when our brains are hotwired and hair-triggered by the constant barrage of weirdness that CRPS creates.
The primitive parts of our brain that monitor risk and reward, hazards and fears, aversion and attraction, are all potentially infected with the disruption and misfiring that CRPS causes. It’s a central disease, so the pain it creates in the body can be reflected and echoed and magnified by the upheaval it creates in the brain. This can make it very hard to know what’s really going on, especially for the person most closely involved.
This is why coloring, meditation/contemplation, relaxation techniques, and inner arts like yoga and qi gong are so useful. They smooth out the chaotic ripples set off by the disease, so we can hear our inner voices a bit more clearly. Sadly, they’re still seen as something absurd (coloring? Really??), out of reach, exotic, or personally irrelevant. My doctors almost never mention them, and if they do, it’s usually clear that it’s something they don’t do themselves — it’s for the patients. And, as every practitioner knows, patients are just a little less than fully human.
That’s one thing I learned from working as a nurse at 6 teaching hospitals. Patients are consistently seen as less than fully human. The training in that regard goes very deep. Knowing that may make it easier to understand why things are the way they are in the modern health care system.