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.
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.
In 1986, the course of neurologic treatment changed forever when Mark Block, one severely spine-injured young man, chose “imp-possible” over “impossible” and, every day, spent hours imagining how it would be to walk again, imagining his “wires” getting hooked back up again, riding a wave of inner certainty that can only be called a gift.
He mentally rehearsed endlessly. Day after day after week after month.
And then, months into his care, he told the nurse, “Watch this,” and made his foot twitch. The first nurse dismissed it as a spasm. The second or third nurse got the doctor.
The doctor stood over the foot — really close — and said, “Do it again.” Twitch.
One of the great moments in medicine.
Upon discharge, he walked out of the hospital.
Some of the meditations from my pain psychologist are visualizations. They’re made for a mass audience, not for people with chronic illness generally or CRPS specifically, so a certain amount of tolerance with the language is required. (At one point, the narrator says, after a pregnant pause, “Looking good.” Oh for heaven’s sake.)
Fortunately, she’s dropped pearls of wisdom about what’s important in these exercises, so I’m (naturally) mulling over a new set of scripts which attain those ends a wee bit more gracefully. (Of course, the files will be freely available to download.)
The key point is, it’s important to imagine what it feels/looks/smells/sounds like to be really well, really functional, really active, really smart again. Here’s the lowdown:
It’s not just a set of images, it’s a multisensory experience that I imagine as clearly as a good memory.
It’s important to do so vividly and frequently.
It’s important to think of imaginative experience as a good working hypothesis, rather than a hopeless quest or pointless daydreaming.
That’s key. Making it seem real, and not dismissing it afterwards. Over and over again.
That’s how the brain is persuaded — molecule by molecule, link by link, cell by cell — to give up its current structure, which pins so much of the neuro-anatomical, neuro-chemical and neuro-endocrine dysfunction in place.
Then, in many cases — and with suitable support from nutrition, psychological care and physical activity — it’s possible to reverse-engineer a healthier, more functional neuro-setup.
It takes time. It takes dogged persistence. It takes a vivid imagination — which can be developed, if it’s not already there. (Like getting to Carnegie Hall: practice, practice, practice.) Last but not least, it takes a smidgen of luck.
The imaginative experiences, if all goes well, help your neurological structure leap the chasm between what it is and what it should be. It’s an enormous leap of faith to get started, let alone keep going for as long as it takes to rewire such an astoundingly complex structure.
Of course, inner resistance and outer events are liable to leap out and knock us off track, because that’s what they do… and we have to find ways to pick ourselves up and dust ourselves off and get back on track as soon as possible.
It’s a huge job, inside and out — all that leaping.
But it’s not impossible.
I’ve been mulling experiences that I can imagine failing to do with my current body, but remember doing with my healthy one. I think I’ll write them out (word-painting at its most precise) and build really great imaginative experiences to come back to, again and again.
Running; sailing; riding; studying; traveling; writing complex books; lecturing on neurology, pain, and healing — you know that’s what I’m thinking about.
What would your imaginative experiences be? What would you leap the chasm for? What could you immerse yourself in, week after week, month after month, maybe year after year, for the chance of pulling yourself up to it?
It’s an interesting question, isn’t it? I have a feeling my list will change with time. As I sit with these imaginative experiences, I’ll see which ones really keep on giving, and which ones were better in theory than practice — and, of course, I’ll find the one I haven’t thought of yet, which will turn out to be key.
At the moment, the hard part is coming back to reality afterwards. That can really suck. But there are ways to deal with that — instant distraction, for instance — and the more I think it over, the more I think it’s worth it.
I do well with having rather demanding overarching goals. (Trauma nurse at DC General, software geek at Borland? yeah :)…) I have some good mental and creative goals (books on mythology and CRPS neuro-endocrine-immunology, 501c3 called “CRPS: Art and Spirit”, etc.), but my physical goals are reactive rather than proactive.
Right now, it’s all about beating back the assaults on my function; there’s none of that necessary “F.U.!”-sized stuff on my horizon that can help me bring enough focus and determination to vault over such paltry issues as washing my damn hair. (One side of my face laughs wryly as I say that.)
There’s the shorter CRPS walk/roll/run in December, Quench the Fire!, and that’s a good, reasonable goal.
I need a slightly unreasonable goal, or I can’t really focus. Normal goals really do bore me. Sad, possibly warped, but true.
+ I have a year to pull myself together. If you could help hook me up with some kind of structure for training, so much the better. + Keck staffs the medical tents, which I find automatically reassuring. + It’s slightly crazy, but not completely insane. Perfect.
– Mostly pavement. A real problem. (I don’t have to train on pavement, though.)
– Potentially difficult, risky and expensive. …Just like life.
I think the Ayes have it. What do you think? And, if I’m in town, I’d be delighted to do the 5/10k at the end of this year. Not as a goal, but as a coincidental benefit.
It’s all about pacing.
I realize we’ve only just met, and this might strike you as brash or ill-considered. I’m not saying it isn’t, but it’s very much in character and, with a little bit of faith from those backing me, could be just the mental kick to help with quite a few intermediate hurdles.
And, of course, I might finish.
(With a little publicity, this could be pretty cool all around. Fat, brittle, middle-aged, chronic CRPSer turns marathoner. — Huh, that gets MY attention! And how cool if I was not the only one….)
I used to be a middle-distance runner, going 4 miles up and down a canyon or 6-10 over surface streets, 2-5 days a week. I kept getting back to it, pre-injury; I enjoyed it, and looked for places to live where it was safe to run.
Marathoning is a different mindset, but I think it’s learnable. And learning to do a marathon in a paced, calm, controlled, ANS-managed, non-frantic manner… well, that’s one hell of an F.U. to CRPS!
I look forward to hearing what you think about this… I think 🙂 I really do want your advice and would love to be able to check in with you as I go, so please mull it over. I’m seeing my whole team next week, so I’ll get to do plenty of hashing-out. I’ll blog it and talk it over with some of my old guard this weekend, too, so I’ll be better prepared for our conversations.
The grip of the last round of the Yucks started to break right after posting my last. I hate it when I have to go that far to get past a bad spot, but hey, I’ll do whatever it takes to keep heading in the right direction.
Dignity is optional. Progress is not. Words I live by.
My new kitten has changed apparent gender twice, and is back to being a boy kitty — not that it matters in any practical way. I was looking for a name as elegant, good-natured and playful as he/she/it, while treating an upper respiratory infection that made that left eye look like a mouse:
My cat’s mouse
But then, with returning health and strength, his natural energy and violence reasserted itself. He has exactly two gears: 1. Unconscious (or nearly so) 2. Full-tilt, greedy, grasping, and spikily impulsive (as the scratch-marks around my blinked eyelashes attest)
As for my own care, I’m up to 2/3 of my reiki time and 2/3 of my basic qi gong routine, and hope to get some t’ai chi in today as well. This is tremendous progress.
Vegetables are once again a chief component of my diet, thanks in no small part to an enormous bag of frozen “Normandy style” blend from Costco and our local dollar store, which sells cheap organic produce out of cardboard boxes.
I actually did laundry yesterday. Today, I hope to take a shower and — gasp — wash my hair!
I realize only a minority of you will find that truly inspiring, but the rest can have a good laugh… and then think for a minute 🙂
For me, life with CRPS is indeed a matter of tiny triumphs and great goals. For the record, I’m still bound and determined to advance the search for a cure, and yes, I’ve gotten slightly more concrete in my ideas about that… More to come in time.
And now, just for the deliciously hokey yodeling at the end…
Links list: Here is a recap and explication of the links used in this post:
Where you can buy Lee Holden’s excellent beginner routine, which gets more interesting, more useful and more inwardly complex the more I do it: Qi Gong Flow (external site; his work highly recommended)
An excellent blog post on the relationship between tiny triumphs and great goals: New year, new thinking from Elle and the Auto Gnome (external site, very highly recommended)
I’m filling out paperwork for these assessments. It’s a lot of homework, especially since they didn’t provide anything I could edit in softcopy. (Wait… how long have computers and the internet been around? Doesn’t the ADA require hospitals to provide access? … ok, never mind. Anyway.)
I got to the usual 1-10 pain rating scale and my gorge rose. That’s so irrelevant to my life now that I can’t even throw a dart at it.
Between my self-care strategies and spectacular mental gymnastics, the level of what most people would experience as “pain” is a secret even from me, until it’s strong enough to blast through the equivalent of 14 steel doors, each three inches thick. At that point, the numeric level is off the charts.
What’s useful and relevant is how well I can cope with the backpressure caused by the pain reflexes and the central and peripheral nervous system disruption this disease causes.
You can read on without fear, because for one thing, it’s not contagious, and for another, your experience of pain — whether you have CRPS or not — is uniquely your own. This is mine, as it has changed over the years…
Step 1: Acute CRPS, with otherwise normal responses
My first pain rating scale, just a few years into the disease’s progress, was suitable for a normal person’s experience. My experience of pain was still pretty normal (apart from the fact that it didn’t know when to stop):
No pain at all.
Hurts when I stop and look.
Neither looking for it nor distracted.
Noticeable when concentrating on something else.
Nausea, headache, appetite loss.
Interferes with concentration.
Drop things, grip unreliable.
Difficult to think about anything else.
Trouble picking things up.
Makes concentration impossible.
Interferes with breathing pattern.No grip.
Can’t think, can’t speak, can’t draw full breath, tears start –or any 3 of these 4.
Unrated even numbersindicate a worse level of pain than prior odd number, which does not yet meet the criteria of the following odd number.
Note that weakness is only loosely related to pain.I drop things and have trouble picking things up at times when I have little or no pain.However, as pain worsens, physical function consistently deteriorates.
Notice how the scale ties the rating numerals to physical and mental function. This is crucial, for two reasons — one personal and one practical:
– Personally, I can’t bear to let misery get the better of me for long. Tying the numbers to specific features keeps the awful emotional experience of pain from overwhelming me. Making the numbers practical makes the pain less dramatic.
– Practically, in the US, health care is funded by a complex system of insurance. Insurance companies are profit-driven entities who are motivated not to pay. They don’t pay for pain as such, only for limits on function. This makes my pain scales excellent documentation to support getting care paid for, because MY numbers are tied to explicit levels of function. (Hah! Wiggle out of that, you bottom-feeders.)
Step 2: Early chronic CRPS, with altered responses
My next was upwardly adjusted to describe learning to live with a higher level of baseline pain and noticeable alterations in ability:
Neither looking for it nor distracted.Forget new names & faces instantly.
Cool to touch @ main points (RCN both, dorsalR wrist, ventral L wrist). Hyperesthesia noticeable..
Interferes with concentration.Anxiety levels rise.Can’t retain new info. Can’t follow directions past step 4. May forget known names.
Nausea, headache, appetite loss.Grip unreliable.Hyperesthesia pronounced. Color changes noticeable.
Absent-minded.White haze in vision.Can’t build much on existing info.Can follow 1 step, maybe 2.May forget friends’ names.
Drop things.Cold to touch, often clammy. Arms & palms hurt to touch.
Can’t pick things up; use two hands for glass/bottle of water.
Makes concentration impossible.Hard to perceive and respond to outer world.
Interferes with breathing pattern.No grip. Everything hurts.
Can’t think, can’t speak, can’t stand up, can’t draw full breath, tears start –or any 3 of these.
Notice how specific I am about what general tasks I can complete — following instructions, lifting things. These are the fundamental tasks of life, and how do-able they are is a fairly precise description of practical impairments.
Step 3: Established chronic CRPS
And my third changed to describe living with more widespread pain, a higher level of disability, and — most tellingly — a physical experience of life that’s definitely no longer normal:
Neither looking for it nor distracted.Forget new names & faces instantly.
Cool to touch @ main points (RCN both, dorsalR wrist, ventral L wrist, lower outer L leg/ankle, R foot, B toes). Hyper/hypoesthesia. Swelling.
Interferes with concentration.Anxiety levels rise.Can’t retain new info. Can’t follow directions past step 4. May forget known names.
Nausea, headache, appetite loss.Grip unreliable.Hyper/hypoesthesia & swelling pronounced. Color changes. Must move L leg.
Absent-minded.White haze in vision.Can’t build on existing info.Can follow 1 step, maybe 2.May forget friends’ names.
Drop things. Knees buckle on steps or uphill.Cold to touch, often clammy. Shoulders, arms & hands, most of back, L hip and leg, B feet, all hurt to touch. L foot, B toes dark.
Can’t pick things up; use two hands for glass/bottle of water.No stairs.
Makes concentration impossible.Hard to perceive and respond to outer world.
Interferes with breathing pattern.No grip.No standing.Everything hurts.
Can’t think, can’t speak, can’t stand up, can’t draw full breath, tears start –or any 3 of these.
The CRPS Grading Scale
The other scales measure the wrong things now. Asking me about my pain level is bogus. It would have the asker in a fetal position, mindless; is that a 5 or a 10? Does it matter?
I need to avoid thinking about depressing things like my pain and my disability. I focus pretty relentlessly on coping with them and squeeezing as much of life into the cracks as possible — on functioning beyond or in spite of these limitations.
The fourth rating scale is much simpler than its predecessors. It’s based, not on level of pain or disability, but on the degree to which I can compensate for the disability and cope past the pain. Therefore, this rating scale remains meaningful, because it describes my actual experience of life.
A. Coping gracefully
Track to completion, baseline memory aids sufficient, comprehend primary science, think laterally, mood is managed, manner friendly.
Relatively good strength and stamina, able to grasp and carry reliably, knees and hips act normal, nausea absent to minimal, pulse mostly regular.
B. Coping roughly
Completion unrealistic, extra memory aids required and still don’t do it all, comprehend simple directions (to 3-4 steps), think simply with self-care as central concern, unstable mood, manner from prim to edgy to irritable.
Moderate strength and stamina, grip unreliable and muscles weaker, balance goes in and out, knees and hips unreliable, nausea and blood sugar instability alter type and frequency of intake, occasional multifocal PVCs (wrong heartbeats) and mild chest discomfort.
C. Not coping well
Hear constant screaming in my head, see white haze over everything, likely to forget what was just said, focus on getting through each moment until level improves, manner from absorbed to flat to strange, will snap if pushed.
Muscle-flops, poor fine and gross motor coordination, major joints react stiffly and awkwardly, restless because it’s hard to get comfortable, unstable blood sugar requires eating q2h, bouts of irregularly irregular heartbeat.
Unable to process interactions with others, suicidal ideation.
Unable either to rest or be active. No position is bearable for long.
There is no Grade F. Did you notice that? As long as I have a pulse, there is no F, which stands for Failure.
In the words of that divine immortal, Barrie Rosen, “Suicide is failure. Everything else is just tactics.”
So what’s the point of all this?
Documenting our own experience in terms that are meaningful and appropriate advances the science. The treatment for this disease is stuck in the last century in many ways, but that’s partly because it’s so hard to make sense of it. The better we track our experience with it, the better outsiders can make sense of it.
Since studies, and the funding for them, come from those who don’t have the disease, this is the least — and yet most important — thing that we can do to improve the situation for ourselves and those who come after us.
This isn’t a bad snapshot of the natural history of my case, either. Understanding the natural history of a disease is a key element of understanding the disease. Imagine if we all kept pain rating scales, and pooled them over the years. What a bitingly clear picture would emerge.
I’ve never sat back and looked at all of these pain rating scales together. It’s certainly an interesting mental journey.
Important legal note: These forms are available free and without practical usage limitations; to use, alter, and distribute; by individuals and institutions; as long as you provide free access to them and don’t try to claim the IP yourself or prevent others from using it. All my material is protected under the Creative Commons license indicated at the foot of the page, but for these pain scales, I’m saying that you don’t have to credit me — if you need them, just use them.
I’m working on a series of 3 novellas, a triptych:
1. Kronos in season: The growing-up of a primal god.
2. Hell — the bright side: The original story of Persephone, the original career woman.
3. Pain, a comedy: the intimate family drama that came down to us as the story of Chiron, the wounded healer— and possibly the first recorded case of CRPS.
(Warning: slapstick and hangman’s humor, sometimes simultaneously.)
I’ve been bogged down on number 2 for the best part of a year. In other words, I’ve been stuck in Hell… heheh.
“That Heironymous Bosch. What a weirdo.” – Good Omens
Because myths are about the greater parts in ourselves. Those of us in unbearable situations (like the Newtown teachers or Mother Theresa or, indeed, anyone with a terrible illness) have to be superhuman at times. Sometimes most of the time.
I should have died at least 5 times in the past 10 years. But here I am, very much against the odds, still thinking (sort of) and writing. Rediscovering mythology played a part in that.
And, more than ever, I find it incredibly easy to tell those enormous stories as if I were talking about real people in real time — because, in my own mind at least, I am. When I write about gods and demons, I’m writing of things I know, although under different names.
You should meet my friends with CRPS — and some of their parents. These people embody powers of creativity, diligence, determination, resourcefulness, strength and brilliance that make the great gods of prehistory look like punks, and leave modern adjectives beggared. Telling myths is easy-pie after talking to them!
If we should stick to writing what we know, then I’ve been to Hell and back so often they’ve installed a revolving door for me. I’ve wept on the knees of Hera. Sedna is my sister. I’ve heard Taliesin’s lament. Coyote has my home address, and comes over (too often) for tea… I have my suspicions about what he puts in his cup — and mine.
I won’t discuss the demons, except to say that they, too, can usually be healed. But it’s always by the thing you wouldn’t think of.
“O..kay.” Checks my head for tinfoil hat. “But what does mythology have to do with CRPS?”
It gives us back the unstoppable inner part of ourselves that can defeat it in the end.
The first leg of this flight was the best I’ve had in years. I chit-chatted at the gate with another invisibly disabled person for half an hour and the three of us (including his wife) kept each other very amused, then wound up with not just one, but two, delightful neighbors.
No sooner had I noticed, and enjoyed, the fact that I could converse for an hour and a half without saying “CRPS”, than one of my lovely neighbors turned to me and said, “And what do you do?”
“I’m a writer.” A surefire conversation-starter, that.
Inevitably, “What do you write?”
I talked, not so much about the disease, but about my core group of CRPS friends, most of us in different countries. I described our ongoing efforts to publicize the disease by surfacing the art and creative work of people with CRPS, of pooling our own information about what works both within and outside the standard medical model, and our hope, one day, to be funding research to quantify what works in fields that have been completely overlooked (I’m being tactful) for so long.
I got what could be THE critical referral to a lawyer who has relevant experience in nonprofit structure. That alone might have been worth the price of the ticket.
Then the entire plane sang “Happy Birthday” to my other lovely neighbor.
Taking a day to rest has been just the thing.Now here’s what I mean when I say, “I took an Epsom bath…” And I’m sorry to say that getting images loaded will have to wait for another day, so use your imaginations for now 🙂
Nearly all motels have a bathtub. I consider this essential. They’re small, but adequate. With a swipe of cleanser and a quick rinse, I’ve found all of them usable so far.
I should add that baths are not essential to Epsom treatment for CRPS. Here are a couple of tricks I’ve used, with a degree of success which not only included the targeted limb but also improved CRPS for me generally:
I’ve immersed my arms in an Epsom solution in a sink or basin. This is great when I’m not up to a bath, but I’m too chilly to sit around with wet limbs. I lean into the basin, with sleeves all the way up, and slosh and slosh and just soak it up. I’ve found that not only does it help my arms, but the relief goes up through my shoulders, down my back, and even my feet feel better after doing this with my arms for 15 minutes or so, 20 minutes if I can stand there that long.
When the dysautonomia is being REALLY bratty, I sit with a basin of Epsom solution and a tea towel nearby, and simply wipe the bothersome limb, stroking from healthy area to painful/spasming/misbehaving area, with the same mental chants I describe below…
Both of these strategies work extremely well. Many of us are accustomed to sink baths, and it’s no harder than that — easier, because rinsing is optional.
Temperature – the first consideration
People with chronic CRPS have two substantial issues that affect bath temperature: wonky signals to the circulatory system, and screwy temperature regulation.
Hot baths are a thing of the past. They aren’t good to me any more.
I like a bath that’s just a few degrees warmer than the temperature that feels like nothing on your skin. That seems to provide the best results.
I find chlorine to be counterproductive, so I let it go first. I run the tub a little hot, with the fan on, and leave the room for 5-10 minutes until most of the chlorine dissipates. (This really works.) Then I adjust the temperature.
MgSO4, my ally
I’ve gone up to using about 2 pounds of Epsom salt for one bath. That’s about a third of the 6 pound bag, costing between $3.50 and $6.50, depending on where you buy them. I used to use a cup or two, but I really get better results with a stronger solution.
Remember, this is about re-regulating and re-normalizing, so leaping into the bath and getting busy is the wrong thing to do!
Going one step at a time and persuading my body to stabilize at each point is how the process works.
So I take a couple minutes to just sink into it, let the mottling pattern on my lower body and arms fade, and get some circulation going to my overworked skin.
I brush over all my limbs with my hands, introducing them to the idea of tactile input, and how that should go. This is an important first step, because the touch of a hand wet with Epsom solution is softer than silk, and it’s important to start with the most positive possible sensations. This helps de-alarm your central nervous system as well as re-acquaint your skin with the world. This is supposed to start, and end, as a definitely positive experience. In between, there might be some work.
When working on such deep and challenging health issues, it’s important to set yourself up for success whenever possible!
Back to our bath.
Nearly all motels have washcloths with a nice scrubby texture. The soft kind that you get in the bath and body store feels to me like turgid gelatin, soaking up a lot of soap and doing very little in the way of exfoliation – which is what I used to use washcloths for.
Now, it’s all about renormalization – or, to use the standard allopathic medical term, desensitization.
Leave it to medicine to make returning to normal sound like something bad!
I start with the soles of my feet. If yours are too sensitive to touch, start where you can touch. Remember, set your body up for success. This second pass distinguishes between contact on the surface and underneath, which are two different sensory realms. The first thing I do is go underneath, to the tissues below the surface of my feet, in a gentle and encouraging way.
I hold the washcloth in my open hand, using a big, squishing gesture.
With that big gesture, and a certain amount of gentle elbow grease, I reassure the soles of my feet that they’re doing fine. Once they start sending appropriate signals of touch and motion, I work around the foot and up my ankles.
Using the washcloth in one hand, and nothing in the other, I alternate strokes, soothing the frazzled burning sensation left by the terrycloth with the silkiness of Epsom water in my palm. The frazzled sensation eases off gradually.
I don’t just notice what the sensations are from my skin, I tell that part of me what the sensations ought to be: It’s just terrycloth. There’s no burning here. It’s just terrycloth. It should feel pleasantly scrubby, nothing more.
Every now and then, I move the washcloth to a part of my body that still thinks terrycloth is just terrycloth, and give myself a brief demonstration. That seems to help.
Once the signals start calming down a bit, I can go deeper. My calves take a little extra care. I start on the left, and it feels like a hunk of plastic. I tell it to calm down – in firm, maternal, authoritative tones – and go squish my right calf instead. When my right calf and shin are sending nice, normal signals of terrycloth texture in motion, I go back to my left calf, reassuring it that you can be normal, you know perfectly well what that feels like, there you go, you can do it.
Firm, yet loving, maternal tones are hard to resist. It’s a great re-progamming tool for bringing your brain closer to normal.
Eventually, my left calf loses that awful dense feeling and starts to feel like a leg again.
The next step is to address the surface sensations on up the rest of me.
I coach my skin not to send sparkling messages of hot and cold where the washcloth goes, but just the sensation of terrycloth rubbing moderately over skin, and that that’s okay and the right thing to do.
I work my way up my legs, paying attention to the major nerve path and the major muscle groups (always with big, squishy gestures, not too challenging, but very tissue-mobilizing.)
I go back to my knees a couple of times, where the main effort is to mobilize the circulation and draw away the swelling.
I work on my low back and hips until the inclination to spasm turns off. I tell them to take it easy, just let go, you’ll know when it’s time to contract, now settle down.
Then I lean forward to dip my arms and work on them, with somewhat gentler gestures. Since I can’t remember just what normal sensation is there, I look for overall warmth and better mobility in my forearms, with touch signals as close to normal as we can get.
Part of the idea, obviously, is not only to re-normalize my skin as much as possible, but to improve surface circulation, so that as much magnesium as possible can be taken up by the troubled tissues.
Once I have squishy-massaged my arms from fingertips to collarbones, I do a quick scrubby pass on my back (where I used to get symptoms, and don’t want anymore)…
And then I get the Calgon experience, lying back in a warm bath, feeling alive and remarkably well, with nothing to do but enjoy myself until the water cools.
Speaking to my brain in a way it can’t ignore
Health professionals dress it up in fancy words, but this is what brain plasticity boils down to: our brains take in messages that are so simple and so primal they slide in below the level of words. The way to push back against that plasticity and make it go the way you want, is to address your brain in ways that are simple, primal, and slide in below the level of words – even if you use words at the time. Even in spoken exchanges, remember, 90% of the communication is nonverbal. This is true when we talk to ourselves, as well as others.
With enough persistence, and a persuasive enough message, the brain can be re-reshaped.
Since so much of CRPS’s maintenance relates to the brain having been reshaped in a distorted way, part of the task is to reshape it into a healthier structure.
Dr. S. V. Ramachandran’s work on mirror therapy and lens therapy for people with amputations and other limb pain problems led the way in brain plasticity work, highlighting the very powerful (and nonverbal) effect of visual input on brain remapping.
There are several other ways to do this, including forms of brain retraining such as hypnosis, biofeedback, meditation, specific and clear visualization of painless movement (which, if done clearly enough, can cause brain activity nearly identical to the real thing) – and, naturally, using tones of parental imperative with your own sensations.
Speaking to my body in tones of loving maternal authority, I find, is remarkably persuasive.
Why I start deep and work my way out
I find that it’s often easier to start with deep tissues and then address the surface issues. It sounds weird, but it’s often easier for me to get past the surface sensations when I’m reaching into the muscle and fascial layers, and then, when the deeper tissues are responsive and the blood is flowing through them again, it’s a lot easier and more productive to work out the surface sensations.
Conversely, if I start with the surface sensations, I may not get far enough to be able to dig in to release and mobilize the deeper tissues. Getting halfway through surface pain leaves my body a lot more sensitive to intrusions than just charging in and starting with the deeper tissues.
On the other hand, there are times when the surface simply has to be dealt with, or there’s no chance of getting to the deeper tissues. My left calf was like that when I first wrote this, though it has improved a lot since then.
YMMV. Each of us is different. That is part of what makes CRPS so interesting, and at the same time so darn hard to treat.
In mobilizing tissue, the washcloth provides traction against my skin, so I hardly have to use any hand strength at all. This is important, because if I had to rely on my grip to get hold of the tissues, this would be totally out of the question.
The water neutralizes a lot of gravity, so it’s easier to control a limb you’re massaging. I can squish the muscles with either one hand or two, boof them against the bone, and jostle them around.
I can mobilize a lot of tissue with very little effort, if I use a washcloth in the bath.
I figure I should spend at least a solid 20 min. in the tub, to absorb as much as possible of the magnesium, the warmth, and the chance to melt all the little knots out of my brain. It’s not a bad prescription. Not bad at all. There is always considerable improvement, and sometimes it makes me feel almost completely well.
Last week, I was in California, doing good and necessary things.
This week, I’m in Massachusetts, doing different necessary things.
I have to find a doctor in LA (long story) and soon will have to be there.
Meanwhile, I’m tired of being this sick and am determined to interview some patients and practitioners, make the time to put together what I’ve learned, and see what progress I can make against an impossible illness; this will probably, though not certainly, put me back in northern California for a bit.
I have a cat waiting for me in LA, a friend waiting for me in San Antonio, a family waiting for me in Vancouver, and the home of my bones in the Berkshires.
It’s very quantum: I can be sure of where I am or where I’m going, but not both.
CRPS, though, I intend to sort out.
My lovely Henrietta is going to get a double coat of wax this week. It’s nearly the last thing to do before I can — carefully, slowly, gently, mindfully, in short bursts, with at least an hour each of meditation and exercise every day — begin the long drive.
I just hope the gas prices go down. I’m going to be traveling for awhile.