Quick brain dump here. There have been a lot of questions lately about treatment options. THIS LIST IS NOT EXHAUSTIVE. It’s barely an overview. It’s just a note I worote in answer to someone who asked about prolotherapy, where a sugar or basic solution is injected into a painful area and the harmless irritation causes just the right kind of healing bloodflow for some people. Here is my answer…
Prolotherapy is one of those things that works great when it works at all. It’s definitely individual-dependent. The tissue irritation, so helpful to those who don’t have spastic vessels, can do a number on us. But not everyone.
If your CRPS is more peripherally maintained, then it might help, assuming the irritation does what it’s supposed to and the tissue response doesn’t trigger autonomic dysfunction, with circulatory weirdness and the whole color/swelling/pain circus that comes with it.
If your CRPS is more centrally maintained, which is kind of a hallmark of the ongoing disease, then I don’t see how treating the area with anything, let alone an irritant, would be any good. It does nothing for the central part of the nervous system.
I consider myself lucky that the usual pain meds nearly killed me, and I had to go the diet modification/supplementation route almost right away. Eliminating things that irritate my central nervous system, and supplementing with things that help repair damaged nerves and fragile tissues, was absolutely essential. If I hadn’t done that, I wouldn’t have lived long enough to do anything else.
At the risk of starting a shooting war here, the MCS (multiple chemical sensitivities) and neuro research hounds I’m close to, indicate that the most common neuro allergens in the diet are gluten (wheat, rye, barley, spelt, triticale, “natural flavorings”; oats have a similar molecule, so YMMV), corn (especially corn fractions like HFCS and “natural flavorings”), fresh dairy (which an incompetent gut like mine breaks down into a molecule a lot like gluten), MSG (often wheat derived), phosphoric acid (found in most dark sodas), and benzene (anything with the syllable “benz” in it — read labels, or better yet, don’t eat things that come in packages, which usually have BHA or BHT added to the packaging.)
Common neuro allergens in the environment include petrochemical products (photo chemicals, printing chemicals, gasoline, many cleaning products) and most chemical scents, most notoriously the line called Axe, which may trigger psychotic breaks in vulnerable people, according to disturbing reports.
A couple of techniques do address central sensitization:
– Calmare, which is a subtle, varied, electric signal that rescrambles the pain impulses and has given many CRPSers outstanding relief.
– Ketamine, which is an anesthetic that sort of reboots the brain. It must be administered by a competent physician well-trained in ketamine administration for CRPS, as it’s still a dangerous drug, but with right matching of patient to protocol, it can work wonders.
– Spinal cord stimulators. These are surgically placed and can be highly problematic, but if they’re the right thing for you, they can give you your life back to a large degree. There are electrodes shoved right into your spine, so if your pain is mediated mostly in the brain, not so good. If it’s still at or below the spinal root, excellent.
As for supplementation, which you don’t need doctors to do … Good, health-food-store supplements are essential. Don’t waste your money on the plastic pills at the pharmacy (check Consumer Reports to find out just how bad they are.) Your body is burning through nutrients desperately fast all the time. It can’t keep up. We need a healthy diet so as not to bring in more problems, but we can’t possibly meet our needs that way any more, with all the pain and the other cellular and metabolic insults of CRPS.
The nerve cells and muscle cells are the biggest suppliers and the biggest consumers of antioxidants. As muscle cells degenerate and nerve cells take a beating, they need more and more but can produce less and less. The math catches up to us after awhile and then it takes time for the supplementation to penetrate enough of the starved tissue around the gut to work its way to our CNS — but, from my experience, it was well worth it! The time was going to pass anyway, and I was better at the end of it.
Neuro-oriented antioxidants include SAMe (a type of methionine, primal antioxidant used inside the mitochondrial cell), N-acetyl cysteine (NAC), and co-q 10.
Vitamins A, D, E, K, and moderate amounts of C are important, especially the D3 — much bone loss and the concomitant pain could likely be avoided if we all had our D levels checked and then supplemented accordingly.
(I’ve been told that C can become pro-oxidative in a sickly environment, so I have to look into that.)
B vitamins are absolutely crucial to neuro and other cellular repair, so a good B complex is important.
Magnesium, whether as lotions, Epsom baths/rubs, or supplements, is essential. It’s simply huge for cutting spasms, which underlie so much of the nagging side of the pain, and supporting basic cellular functions as an electrolyte.
There are supplements that can provide precursors to neurotransmitters, and I find they roughly double the effectiveness of my SSRI and SNRI, keeping me in the low-middle range of doses instead of me getting overdosed to near dying as I once was. Phenylalanine is a precursor for dopamine and norepinephrine, and the d,l form has been found to be genuinely helpful in reducing nerve pain for many. It also helps me stay less confused (dopamine, perhaps.) 5-HTP is widely known as a serotonin precursor, as is tryptophan. Both can help with sleep, too. I do better with 5-HTP.
There are a lot of brands, and there’s a lot of behind-the-scenes business ugliness behind the brands as the whole “natural everything” movement creates the possibility of money. I’ve watched the circus for awhile, and at this point, there are just a few brands I can recommend as still being good, consistent, and generally digestible:
Jarrow (great antioxidants)
NOW (inexpensive and very good; I always get my 5-htp from them)
RAW Vitamin Code (a Garden of Life line of food-based products, excellent; I take only half the recommended dose of the multis, and boy do they help)
Twinlabs (my second choice for multis and neurotransmitter supplements; widely available)
Solgar (pricier than Twinlabs, but much the same; widely available)
My fallback brand is Life Extension, which is still excellent.
I get mine for wholesale at vitacost.com (fast delivery, but don’t carry Jarrow), luckyvitamin.com, or occasionally for a bit more at Amazon if the others are out of what I need.
It’s a hideously complex disease, and in cases like ours where conventional medicine has almost completely failed, we have to take charge of that complexity and redesign our lives in order to have something worth living.
We really do have to change or die, and it is a surprisingly hard choice at times.
Further comments and suggestions on treatments and management would be most welcome.
Older Brother and his wife, Aunt Krusty, sent me a fabulous little doohicky from a medieval town they visited. It’s a brooch of a common design element used in the Middle Ages: a tabby cat with two tails and fabulous eyebrows offering a mouse, with the legend, “visis mu” — “here’s the mouse.”
The enclosed card contains the usual wonderfully vague, semi-academic wording saying that animals with two tails (no mention of fabulous eyebrows) are signifiers of evil forces at work, but beyond that, nobody really knows what this means.
I thought some academics kept cats…?
My lovely polyglot friend Sylvie does. Sylvie is a CRPS compatriot who lost a frightening percentage of weight late last year, from which she’s still recovering. Her cat Nala has become a serial killer of the entire species Rodentia, bringing her grisly accomplishments to lay at Sylvie’s feet — or couch, or pillow — with startling frequency. Naturally, they aren’t always quite dead.
Cats don’t have thumbs, so they don’t really get it about cooking and cupboards. All Nala knows is that Sylvie obviously needs to work on her hunting skills, but in the meantime, Nala can at least help her fatten up.
Also, cats tend to gatomorphize, just as those of us who are close to them tend to anthropomorphize. Nala has no idea that mice, gophers, shrews, and moles do Sylvie no good at all; that, on the contrary, they’re upsetting, messy, and potentially infectious. Nala thinks they’re good, and Nala cares for Sylvie, so they must be good for Sylvie.
She honestly believes that, with all her furry, loving little heart. “Visis mu! Have this great mouse!” So the slaughter continues.
Sylvie’s garden blooms, but her house is an abattoir at times. This is not a bad metaphor for explaining one of the more difficult aspects of being under a doctor’s care.
Most doctors really mean well. Becoming a physician takes an enormous amount of work, which requires great commitment to complete. It’s a hard job with ridiculous hours, especially for the first few years.
That doesn’t mean they’re all bright or gifted or even humane. It just means they believe in the value of medicine and surgery, enough to spend a decade or more learning to do it.
Doctors are intensely, let’s say, socialized to stay within the parameters of accepted practice. It keeps them out of trouble, although it may also keep them from true excellence at times.
Mostly, they love those parameters. They love having guidelines. They are truly, madly, deeply convinced of the value of the meds and procedures that they’re trained in. It doesn’t help that, if they put a foot wrong outside of those parameters and things don’t go well, they can lose everything. They are heavily incented, so to speak, to stay inside whatever they understand their parameters to be.
Now, this is tough for CRPS patients. There is so much variation from one CRPSer to the next, that there are NO established treatment parameters that meet the medical gold standard of being consistent, repeatable and reliable over a majority of patients.
None. Nada. Zilch. There is not one thing that consistently works well for most of us — at least nothing that comes from a bottle or an operating room. Activity, rest, hydration and nutrition all seem to be key, but even their benefits are hugely variable, and you rarely hear about them from physicians.
For a while, it was thought that COX-2 inhibitors combined with membrane stabilizers, came close to being a semi-magical bullet. (Gabapentin/ Neurontin, pregabalin/Lyrica, and so on, are known to most patients as anti-seizure meds, but many healthcare providers call them membrane stabilizers.)
COX-2 inhibitors were given a general thumbs-down over cardiac effects (which many people with chronic CRPS have enough trouble with anyway) and, as peri-surgical meds, did not live up to Reuben’s promise that subsequent chronic pain would be less.
Ironically, it had already been established that 500 mg of vitamin C two or three times daily for 3 months after surgery does have significant demonstrated benefit, reducing the incidence of CRPS – the most intractable and severe form of chronic pain – by 35-80%, depending on the extremity, extent of injury, and probably the degree of compliance. Moreover, vitamin C is very cheap, as well as very effective. (See extensive links list below.)
The anti-seizure meds, unfortunately for pain patients, did not get removed from first-line treatment.
By then, unfortunately, whole nations (Great Britain and the Netherlands, take a bow) had adopted Reuben’s corrupt recommendations for first-line treatment. It takes a lot more effort to undo that level of adoption than it does to hoodwink an entire sub-economy of peer reviewers and medical specialists, apparently.
The arrogantly reputable journals that accepted his work, and subsequently published other work which was based unquestioningly on his false results, are still trying to live it down. What’s interesting is that other doctors couldn’t replicate his results, so he was the only one publishing these great data… yet journals and physicians continued to publish and follow his recommendations. I do hope the journals revised their “peer-review” process to include more actual, I don’t know, reviewing, perhaps by peers.
It could take decades to undo much of his damage, and meanwhile, the advancement of treatment has been down the wrong track for years, while other more appropriate avenues of treatment have been ignored or even forgotten.
So, millions of CRPS patients are being first-lined with truly obnoxious meds with iffy benefits and ghastly side-effects, rather than being examined as individuals, and assessed as to whether:
neurotransmitter support, most provably with antidepressants, would be more appropriate, given disease-related onset of affective symptoms (antidepressants), sleep problems (tricyclics), or dysautonomia (SNRI);
a short, hard attack of narcotics and aggressive PT would answer in the case of a hardy, active, or young person;
a proprietary or tech-based treatment, like TCMI or Calmare, are indicated for those who show active neuroplasticity or respond well to electrical stim; or
this person is a good candidate for ketamine protocols of one kind or another, some of which are no more toxic than membrane stabilizers.
it might be reasonable to try a more experimental approach which has demonstrated significant promise, notably magnesium infusions, immune globulin therapy, or temporary immune suppression.
Oops… Doctors, as a group, forgot to look at the patients in their excitement to have a designated treatment protocol. “Visis mu! Take this mouse – it’s government approved!”
But the doctors doing the offering really think this is a great idea. That’s what the guidelines say, after all, and they are evidence-based – except that that evidence was cooked.
While anti-seizure meds do work very well for some, starting with them reflexively is not reasonable: the cost-benefit profile is worse than most of the other potential first-line alternatives, due to high rates of side effects and comparatively unimpressive rates of usefulness.
Using them as a first-line treatment delays more effective, lower-cost treatment for many people in horrific pain, and, between the delay and the cognitive and neurologic side effects of this class of drugs, causes greater impairment (with higher associated costs) in far too many. It should be a second or even third line treatment, if you go by the evidence that has remained credible – taking a back seat to less fraught (not perfect, but still less problematic) therapeutic agents and interventions.
But the docs who lean on it really think it’s great.
Reminds me of my previous pain doctor, a competent technician with a bedside manner directly related to the patient’s appearance. He has a good reputation in his area – which tells you what a lot of rubbishy practitioners there were in the area.
He wanted to shove into the neck of my spinal column a couple of widgets which were the size of Starbucks drinking straws – you know, those really fat ones that you could suck a steak through, if it’s tender enough. Two of those, jammed into a six-inch length of a space that didn’t have enough room for one, and which – as we now know – was already inflamed in much the same way that the spinal cord of someone with a spinal cord injury is inflamed.
He liked it because shoving surgical hardware into other people’s bodies is what he does best, and these widgets have embedded electrodes which could zap the pain signal at the spinal root of my arms and he thought it would work really well and I had the right psych profile for it and this was the greatest thing since sliced bread.
It was a nice idea, and, again, this particular thing works spectacularly well for some people. For me, not so much. In fact, it was a disaster. It was truly worse than the CRPS pain, which takes some doing. The equipment trial still gives me spasms due to the mere memory of the staggering physical trauma it entailed.
Truly, each of us is unique.
Once he realized that I couldn’t accept his mouse, his whole manner changed. Just like a sulky cat, nursing his disappointment seemed a lot more important to him than finding something that would help me.
How could I be so callow and blind that I couldn’t appreciate this great mouse he wanted to give me? There’s just no helping some people! His neglect and disaffection was so damaging I had to fire him and move on to the excellent Dr. Richeimer at USC Pain Center, 4 hours’ drive away and worth the two-night stay in the armpit of LA.
Another dear friend, the angelically kind M, has roughly 3 dozen anaphylactic reactions a year. She is so hyper-reactive to so many things that driving past a town with the wind in the wrong direction could be the death of her. 3 dozen anaphylactic reactions a year, and she’s in her fifties now. Yes, amazing.
She saw a young cardiologist, who did what young cardiologists do: he threw upon her a huge, bloody gopher, covered in prickles and gore. “Your heart is dicky! This could kill you in a year! Visis mu, I can save you! Isn’t this exciting?”
Personally, I think the appropriate thing to do is to pick that gopher up and shove it down his throat, but when a patient does it, it’s assault and battery with a biohazardous weapon.
The cardiologist, naturally, is doing exactly what he was trained to do and is wildly excited to have such a thrilling case and such interesting news. She, who already faces death on a weekly basis, should clearly get wound up about this because it might kill her if she doesn’t.
A brickbat? A muzzle? What do you think? Words simply fail. All I can think of is applying to him the kind of cat that has nine tails. It’s not a good way to model compassion, let alone tact, however.
As for me, I have to pick a primary doc for myself. My old one retired from private practice, and I miss him, because I could just walk in and look at him and he’d know.
I’m just thrilled at the prospect of training someone new, who will be a generalist treating the peripheral issues of someone with an incredibly peripheral-intensive disease. There will to be many rounds of “visis mu”, as he comes up to speed. And, since it’s all well-intended, I have to find a way to accept one or two mice as graciously as possible. One can only recoil so often before they decide they can’t treat you.
They mean well. They really do.
I never have figured out what to do when a cat, with every evidence of caring attention, brings me a mouse. I try to be nice about it, and that’s the best I can do.
Sadly, Sylvie’s furry little caregiver, Nala, departed this earth for the Happy Hunting Grounds. By a series of flukes, Sylvie wound up with a rescue cat, Filou (meaning roughly “brat” or “mischief-maker”), who has taken over her care with great enthusiasm — and much less bloodshed.
Relatively useful treatments for CRPS:
Most suggestions are pulled from the current IASP recommendations for diagnosis and treatment of CRPS or the pivotal work of Dr. R. J. Schwartzman, Dr. van Rijn, and Dr. Breuhl (part of the team that developed the IASP guidelines), with updates from recent science available on PubMed.
The authors have their blind spots and biases, of course, so researching any therapies that sound interesting is a good use of time.
The National Library of Medicine at the National Institutes of Health (U.S.) is an outstanding clearinghouse of articles from peer-reviewed scientific journals: http://www.ncbi.nlm.nih.gov/pubmed/?term=complex+regional+pain+syndrome
Just add the term of the treatment you’re interested in to the MeSH term, “complex regional pain syndrome”, to maximize useful hits.
I’m too conscientious a historian to call it Indian summer, when the normally pleasant California shoulder season turns murderously hot.
I’m cleaning up, getting rid of clothes that were old a year ago and replacing them, and canning, dehydrating and even preserving food. I feel driven to, although it’s a lot of work and not necessarily CRPS-friendly tasks.
J cannot fathom why I’d be cooking in this heat, let alone making heavy, hearty food like bacon mash.
He’s cutting firewood instead.
Yeah, I know. We’re both kinda special.
I have 4 blog posts almost ready to go up, but I keep making the mistake of starting my online time at social media. Within minutes, my attention is shot. I can’t finish a blog. I can barely finish a sentence.
This is the first vaguely functional day I’ve had after a spectacularly ghastly mast-cell-mediated flare.
Silly me, I ran out of my zyrtec (which I didn’t take very seriously; it’s not important like an SNRI, right? HAH!) and spent one day incoherent and two days merely swollen, crabby and able to cope only by losing myself in mindless tasks or Terry Pratchett books.
Took a day to figure out what was wrong. Partly, that was because I didn’t realize how much the zyrtec was doing for me, and then, of course, there was the headache that made me want to hack off the offending part, which made it quite hard to reason things through.
J is still avoiding me, hiding in the trailer with the tv when he’s not actively butchering logs. It’s possible this chicane isn’t over yet; his behavior is usually a reasonable guide to how unbearable I am.
I only took one zyrtec today, as my stomach would not even think about more. In a couple of days I may be back up to my usual 2. It will be nice to have normal fingers; reasonably functional digestion; less inflammatory pain playing xylophone on my spine, with rimshots off the other joints; and maybe a calm and considerate personality again.
Anything is possible.
Isy’s anti-inflammatory mashed potatoes
Obviously not for those with belladonna sensitivity.
5 pounds organic red potatoes, cleaned and coarsely chopped
1 organic white onion, diced and lightly browned
4 oz grassfed butter, like Kerrygold or Organic Valley Grassfed, in chunks
10-12 oz grassfed aged cheddar, like Oscar Wilde 2 yr, Cabot Extra-Sharp, or Kerrygold aged cheddar, sliced or chunked
Optional: nitrate-free naturally-raised bacon, like Niman Ranch, cooked until very crisp, then drained and crumbled fine
Steam the potatoes in the turkey broth.
You might need to assemble the rest by halves, depending on the volume of your mixing bowl or blender.
Dump the rest of the ingredients into a mixing bowl or, if you have a really good blender, use that instead. Put the potatoes and broth on top, so the butter and cheese start melting under them and make it blend better.
Beat or blend until it’s the consistency you like.
Someone asked a question on social media that led to my doing a brain-dump on the basic format of current treatment for CRPS. This will take on a more formal form, but right now, for quick reference, here it is.
Like many others, this person has narcotics as a primary form of pain control. Increasing the dose increases function, but past a certain point, is that a good idea?
And, more importantly, the biggest question was, what does it really take to be able to have a life again?
Common-sense note on narcotics
Firstly, it is GREAT to have something that works. I know plenty about narcotics from a physiological and neurological and even a gastrointestinal standpoint, so I know the arguments for and against — but, when all is said and done, it’s great to have the option and it’s great to have something that works for you.
Keep what works! Unless and until you really can replace it with something better. (Clinicians, in their overbearing way, can be pretty cold about this.)
In the end, if you need to increase the dose, then increase the dose, but given how our bodies adapt and the disease shifts over time, it might be good to keep higher narcotic doses in your back pocket for breakthrough pain and flares, and see about the other meds that treat nerve pain specifically, support (in some cases) your neurology so you can function better and be more stable, and leave some slack in your body’s narcotics “budget” for other times.
Doctors should be able to support the idea that you should be able to have a life, and happy to help you figure it out. Good pain specialists have this as a specific goal which they try to help us reach as much as possible for as long as possible.
Read tamingthebeast.ca or elsewhere on this blog for loads of tips on nutrition, homeopathics, herbs, and other at-home strategies. This is just about the stuff your doc can do for you.
I mentally break these into 6 categories, 3 of oral meds and 3 of other, more interventional stuff:
Neurochemical support: Mostly antidepressant-category meds, from tricyclics to SSRIs to SNRIs. SNRIs have the significant bonus of potentially stabilizing a faulty ANS.
Transmission shifters: Mostly anti-seizure meds, Lyrica and Neurontin. Ketamine certainly shifts nerve signal transmission, and the protocols for giving it are getting better and more specific. Technically it’s an NMDA receptor antagonist, but it affects opiate and MAO receptors too.
Remember, all meds have side effects. There is no free ride; sorry!
Most of our meds can affect judgment, memory, and perception. Ask a relative, housemate or friend to check your brainpower and personality, to see if there are effects you’re not aware of.
Avoid polypharmacy, or too many meds, because it’s a great way to create a neurochemical mess. I stop at 3 different ongoing meds, since I can’t tell what’s causing problems if I take more. I also have 3 as-needed meds, which I rarely use, unless the side-effects of the pain/nausea/wheezing are worse than the side-effects of the meds.
Last but not least, med is spelled M.E.D. which means Minimum Effective Dose. Both adjectives are equally important. It must be effective, or why are you taking it? It must be the smallest dose that really works well, because otherwise you’re dealing with the same issues mentioned in the previous points, and they get a lot worse with overmedication.
Keep in communication with your doctors about your meds. If they’re savvy, they’ll work with you to optimize your medication profile for best functioning with fewest problems.
Injections and implants: spinal root blocks, prolotherapy, spinal cord stimulators, botox injections, spinal baclofen infusions, implanted drug dispensers.
Zaps and rads: TENS (electric counter-stim blocks the nerve pain), TCM (electro-magnetically stimulates and remaps certain parts of our brain that support the disease), Calmare (a more complex electrical technology that retrains the pain signal so it eventually doesn’t restart.)
Retraining, rebraining: Multi-Disciplinary Functional Restoration/Rehab is the gold standard for treatment. Most of these programs, but not all, require participants to be narcotic-free. The puritanism I can do without, frankly, but the whole-person approach, and the enormous mental toolkit you come away with, is absolutely life-changing.PT, OT, counseling, and learning about relevant subjects from pain mechanisms to nutritional effects on pain and function to communicating effectively with those around you so everyone can do more with less effort, is simply tremendous. It used to be a shoo-in for US citizens because it got people back to work so effectively, but in the industry overall it’s more profitable to keep us sick, so now it’s harder (but still possible) to get that paid for.You have to have determination and some mental flexibility to get admitted into a program, because it’s hard work, but if you find a program that agrees with you, then it could be the single biggest change in your life.
Every time something goes under your skin, your body has a shocky/inflammatory response. It may not be noticeable, but if it is, be ready to manage it.
If you get an invasive procedure, like implants or injections, then use one of the vitamin C protocols to help ward off flares and exacerbations: 500 mg 2 to 3 times daily, for 1 to 2 weeks before the procedure and 2 to 3 months afterwards.
Talk over these different options with your doctor, if you haven’t already — increasing your current meds, using supplemental med support, trying technologies and interventions, risks and benefits.
Also, sadly, it’s important to discuss the realities of funding and insurance coverage, so that you can develop contingency plans to follow in case your hoped-for option doesn’t get approved right away.
Always leave yourself a way forward — that’s a good strategy 🙂
There is a lot that can be done, and most of us cobble together a few different things that work a bit so that, together, they add up to enough to let us … have a life 🙂
I was a Registered Nurse for 8 years — in one of the first HIV specialist units in the country, in the only public ER of one of the murder capitals of the US, in cardiac telemetry, in home care. It was a good, demanding, well-rounded career, if a bit short for my taste.
I’ve often wanted to re-educate my nursing self in light of my experience as a patient.
Here’s one of the most outstanding, outrageous lies we tell ourselves as clinicians: medications are not invasive.
That statement bears no resemblance to the reality of those being treated. It relates entirely and exclusively to the clinician’s experience. The clinician’s unstated assumption is, “I’m not hanging onto the thing that’s getting under your skin; therefore, what I’m doing is not invasive.”
News flash: Treatment is not about the clinician. It’s about the person being treated.
Medications get taken into the whole body, not just the ill part. Injections go right past the first barrier against infection and assault, the skin. Oral medications go through the mouth, descend into the stomach, and there meet the second barrier to infection and assault, the GI system… which they either aren’t bothered by, or can resist.
They’re then taken up by the blood, which goes everywhere.
They are all processed in the liver (it’s called “phosphorylation” and, privately, I suspect that’s why we tend to have trouble with phosphorus issues when we’re on lots of meds.) This is why too many meds for too long can lead, or contribute, to liver failure.
What goes through the liver goes through the spleen and kidneys, because that’s how it works. This is why some drugs can cause kidney damage.
What hangs out in the blood can, all too often, hang out in the brain. This is why some medications for organ issues or even a simple infection can cause deafness.
Blood circulation exchanges fluids with lymphatic circulation. Blood and lymph communicate with the central nervous system via the blood/brain barrier and the sheath around the spinal cord. The blood/brain barrier provides partial, rather temperamental protection, but it can be suborned by anything that makes the tissues fragile — fever, illness, injury… and some kinds of medication.
What is in the blood goes everywhere.
How is that not invasive?
I’m watching my partner fading with weakness after only a week on a couple of cardiac meds. I’m certain his heart has not gotten worse in a measly 7 days. The only thing that has changed is that he is seeing doctors and taking medication — for nearly the first time in his life. (“No side effects,” my left foot.)
How much of that weariness is stress, how much of it is the past couple of years catching up with him, how much of it is heart disease (actually, that part is pretty clear) and how much of it is medications? Each of these things has some part in it, there’s no question, but drawing the line between them is more than I can really do. I know the meds are part of it, but how much?
Medications are intimately, unavoidably invasive. There is no completely safe dose, and there is nothing that helps you for free.
Everything — meds, interventions, surgeries — EVERYTHING has side effects. There is no single thing you can do to your body, or allow others to do, that doesn’t affect every part of you in some way.
My years as a CRPSer, where the consequences of every change are so exaggerated, makes this pitilessly clear to me.
Given that there is no free ride, we have to look at the tradeoffs. Knowing that there are issues with absolutely everything, however “natural” or “close to our bodies’ own chemicals” it may be, we have to balance that against whatever benefits it may have.
Herbs are included, by the way. My increased sun sensitivity (which my disease causes a bit of anyway) and impairment of birth control (which I don’t take — what, mess with these chaotic hormones?) are side effects I shoulder with my eyes open, so that I can have the neurotransmitter support of the St. John’s wort herb I take twice a day.
I review all my medications twice a year at least, to see how I can tread the narrow path between optimum benefit and minimal confusion. Doing this from a chronically slightly confused state is, naturally, a whole different kind of fun. Working out which part of the daffiness is disease and which part is meds and supplements is really my most important task.
My partner has to choose between cautiously building back up some heart strength and circulation — and meanwhile have a life that is a small fraction of what he used to have for energy and activity, unless and until the medications and rehab really work; or risking the total loss of death by having a surgery which would leave him in pain and in rehab for awhile — but, afterwards, bring him back a lot closer to his normal, with many good years ahead.
Wait and see and work and hope, or take a leap and — if you live — work and probably win?
In a way, I envy him. If there were a procedure to do a bypass graft to eliminate CRPS, I’d be in the OR already. I’ve had enough of a twilit life, of exhaustion and fog. I want to get back into the full sun.
I miss running, too.
But it’s his heart, not mine. I do my best to explain things, listen carefully so as not to run over his real thoughts, and grab hold of my anxiety with both hands, so that any decision made is truly his. As it has to be.
Until then, he has to peer through the fog and work through the weariness of these “non-invasive” medications, to make his choices and his appointments. I’m just there to help — and to make sure he’s taken seriously, which is a real drawback to looking as fit as he does. J-playing-on-treadmill
But that issue is another post…
I’m writing a retrospective, looking over the past year. It’s one good way to get my head out of the muddled present.
It’s gratifying to see how I’ve matured as a writer. Most of my posts this year have been solid, practical, and reasonably well-put. I don’t say that as a matter of ego (much), but as a matter of professionalism: if I’m going to be doing this, I should be doing a good job! I’m constantly trying to improve. There is always room for improvement, a fact which I find intriguing more than frustrating.
The arc of 2013 was interesting: started off very rough, so rough I had to completely revamp my pain rating scale to ignore the question of pain, and go straight to the question of function. And even that was pretty iffy. In retrospect, it was actually pathetic.
I moved out of the LA area and in with my beloved – at last! – and rediscovered fresh air and sunshine, which is a great help with the body and mind, I find.
I worked on what I had learned at USC, (here’s one and here’s another example of using those mental tricks) and, in parallel, I worked with my lawyer on closing and settling my work injury case. (I wasn’t able to discuss that at the time, as it was an open legal issue. Now, it’s not. That’s what we call foreshadowing 🙂 )
To my consummate relief and delight, we succeeded in crafting an offer that was acceptable to all parties, and we finally closed the legal aspect of this case – after almost exactly 14 years since my first injury, 12/1999.
Last week, for the first time, I was able to get my medication without needing anyone’s approval. That was a great day.
We have another move coming up in a couple of months, and the idea is to go where I can get all the massage, acupuncture, and chiropracty I need. It’s a much shorter commute to LA, which, I hope, will mean shorter recovery times from those trips.
Moreover, now that I don’t have to argue about my care, I plan to go back to “class” and try to recapture some of what I missed in 2013.
2013 was a lot of hard work, but a lot less brutal than many of its predecessors.
From where I stand, 2014 looks like it’s going to be a lot of work too, but I sincerely hope – I almost expect – to be considerably stronger at the end of it. We shall see.
Happy and painless 2014, with hopes for full remission and possibly total healing for us all! Hey, I dream big 🙂 Postscript:
My partner is becoming better acquainted with what this disease does to me. He wants backup.
I know of two of my compatriots who’ve died of CRPS this week, people I was acquainted with online. The world is poorer without them.
So, what with one thing and another, and despite the absurd snafus involved so far, it’s time to finish up my will and legally establish a durable power of attorney for healthcare. Unless I achieve complete remission, I expect my death (hopefully long since) to be attributed to this disease. My executrix knows, and I trust her to see to it. CRPS is deadly, and it doesn’t get nearly enough credit for that.
If you haven’t already done so, I encourage you to take care of these things, too. It’s very freeing, and the conversations you have around it can be useful beyond themselves.
Being better prepared for these brutal and terminal issues frees up a lot of energy for living and enjoying it. Really 🙂
As many physicians have noted, treating chronic pain is peculiarly frustrating. Therefore, treating a pain condition as subtle, complex and intransigent as CRPS must be heartbreaking — though it’s never as bad as having it.
Don’t get me wrong
If you say hello and I take a ride
Upon a sea where the mystic moon
Is playing havoc with the tide
Most of us live in countries where there are practical limits on who we can see for care. Since there are few CRPS experts to start with, this tends to put us in tight spots.
So, meeting a new doctor, as many of us have said privately, is a bit like being a bride in an arranged marriage in a backward society*: you have no idea how you’ll get along, but this person is not only going to have a significant role in defining your life for the foreseeable future, but can torture and even kill you without any fear of the law.
It sounds dramatic, but that’s the bottom line. Think about it for a minute…
For one thing, nobody likes being in so vulnerable a position. For another, we’ve all paid the price for some practitioner’s ignorance or intransigence, somewhere along the way. The fears are not theoretical; they’re real and appropriate.
Suddenly the thunder showers everywhere
Who can explain the thunder and rain
But there’s something in the air
Add to that the fact that chronic CRPS tends to hot-wire the fight-or-flight mechanism, and you have to realize that the doctor is facing a situation that requires about a million times more tact and respect than they ever learned in medical school.
Don’t get me wrong
If I’m acting so distracted
And then there’s me.
I used to be an RN, so I can use med-speak fluently and, more to the point, I’ve got the background to understand the scientific material I read when it’s time to explore a new facet of this condition.
I was beginning to suspect that he was at least awake, which is a huge bonus in my book… But I had to have my duckies in a row, just in case.
Don’t get me wrong
If I split like light refracted
I’m only off to wander
Across a moonlit mile
Everything about CRPS goes off in different directions, so studying it is like working with refractions.
I studied up on the nature of the brain oddities that characterize ADD.
Figured out where they overlap with the brain damage caused by chronic CRPS.
Then it was the neurochemistry.
I have the neurochemistry of CRPS pretty well nailed, and found that, again, the overlaps with ADD were astounding.
How much of that awful, crippling fog we call “pain brain” is a treatable form of acquired ADD?
Do we really have to live like that?
I might be great tomorrow
But hopeless yesterday
I’m not so sure any more.
Then I looked at treatment modalities for ADD.
The cognitive-behavioral stuff — like structuring your day, having contingency plans, staying in charge of your emotions, and creating ways to check yourself and to take care of yourself when things go wahooni-shaped — are pretty much identical, though CRPS adds a lot of material about pacing, communicating about functional and pain levels, and managing physical limits.
The pharmaceutical stuff has some interesting overlaps, too.
Aside from narcotic pain control (which isn’t much good to many of us), treatment for CRPS neurochemistry tends to focus on serotonin, norepinephrine (noradrenaline), and dopamine; treatment for ADD neurochemistry tends to focus on epinephrine (adrenaline) and dopamine.
More overlap, or is that just a coincidence? Hah! No such thing, when we’re treating the brain.
So, after traversing my “moonlit (or candlelit) mile” of research, I showed up at the psychiatrist’s office with the following info:
I can’t have Adderall, et alia, because my heart is dicky enough as it is. (Firm nod.)
I could face Ritalin, et alia, but I’m already on Savella, which also boosts dopamine. (He shrugged and said, “Same molecule, different location.”)
After a bit more backing and forthing, he said, “How about Provigil?”
I’d seen a friend get hooked on it, so I didn’t leap out of my seat, but we talked it over. His reasoning was faultless. (Something I almost never say.)
More than awake, he was really engaged with my case. So I took the leap of faith and said I’d try it.
He said he’d supply me with samples of Nuvigil (a longer-acting form) since the maker no longer supplies samples of Provigil. (Pharma companies only provide samples of what they still have under patent. They’re in it for the money, remember…)
Don’t get me wrong
If I come and go like fashion
I had the singular pleasure of going in for my follow-up, dressed professionally for a change, and reporting that:
+ I had enough energy to get outside and move around nearly every day. This means laundry gets done, there’s proper food in the house, and I can get some of that so-necessary exercise.
+ I had enough focus to put together a settlement offer, which the insurance company accepted. (WOOT!)
+ I could change focus at need.
+ I was driving better, thinking strategically and more able to pay attention to what was going on around me at high speed.
+ I could sleep better, because I’d been properly awake and engaged during the day. (OMG!)
– My anxiety was no worse, but when it did kick in, it was harder to get it to chill. That was one drawback, but not a major one.
– Nuvigil tends to build up in my system, until suddenly I can’t sleep at all. It took about 5 days to clear it after that. So now I take half a tablet (that is, about 75 mg) every other day. That works quite well.
+ It’s not perfect — it’s not like being well — but I’m so much closer to being myself that I can actually think about what to wear again. (I used to be kind of a fashion plate, in the intersection of classic, practical, and colorful, with a dash of steampunk.)
I told him, “Love and the relationships I have make life bearable. But being able to think, and be productive, and learn things, and get some work done, THAT’s what makes my life worth living. This is giving me my life back. I’m really grateful.”
If I hadn’t grown up in New England (land of the unspoken), I might have missed the slight lengthening of his spine, the slight lifting of his head, the slight brightening of his face, the tiniest lift of a smile.
For once in my life, a doctor of mine got to feel like a rock star.
It might be unbelievable
But let’s not say so long
It might just be fantastic
I got into the car and drove away on a shiny September afternoon in Pasadena.
On the radio, Chrissie Hynde was belting out,
Don’t get me wrong
If I’m looking kind of dazzled
And it put the seal on everything.
For a moment, I tried to stifle the beaming joy that shot through me. Then sanity intervened.
What I wanted to do was pull over, slap on a headset, and dance on the glittering lawn in front of City Hall, arms wide and the sun sparkling through my starry lashes.
I wasn’t sure the police would understand, though.
Instead, I danced in my car, grinning fit to split my head, bouncing my red SUV to the Pretenders.
Drawing smiles even in LA traffic.
Sometimes, the only right thing to do is dance.
Here’s the whole song. At first, I thought the visual story, with its false leads, dead ends, and triumphant ending, was distracting — then I thought about it for a second… 🙂
* Common sense note: obviously, not all societies that practice arranged marriage are backward. I know too many couples who have an excellent partnership and tons of love between them, who were picked out for each other by their nearest and dearest. It’s not arranged marriage that’s the problem, but those situations where there’s a lack of choice and utter helplessness of one partner. That’s what’s backward.
64% of CRPSers experience significant cognitive decline. Speaking as a member of that majority, I think that sucks. Most people with chronic pain find that they experience the following:
– Confusion: it’s harder to keep track of things like we used to.
– Forgetfulness: forget the car keys? We’re capable of forgetting the car. It’s more than a touch of early onset Oldtimer’s.
– Distractability: I got up in the middle of a sentence when my meditation exercise was playing. I forgot what I was doing netween one syllable and the next and I could NOT make myself lie down again.
– Locked focus: once I do get into something, it can be impossible to tear myself away, even if I need to move or stretch or calm a racing heart. It’s *weird.*
– Memory: Forgetting the car? Sometimes I forget my birthplace. There are random, shifting holes in my long-term memory that I can’t do anything about, except waffle and flannel until the subject changes. Learning anything new that isn’t related to CRPS or writing (which my brain seems to have anchored with industrial grade mooring chains, so far) is pretty much doomed.
– Intense, driving feelings: catch me on a bad pain day and discover a new word for female dog, and it’s not because I want to be like that, but my internal brakes are off and everything feels like the emotional equivalent of flashing neon.
– Oversimplifying/black-and-white thinking: this was one of the first issues we addressed in my functional restoration class all those years ago. Without constant checking, chronic pain makes everything MUCH more intense, and maintaining middle gears is a constant job.
– Poor sleep. Trouble waking up. No duh.
Now, just for grins, let’s look at the list of symptoms for AD/HD:
– Difficulty tracking complex ideas/confusion
– Locked focus.
– Memory issues.
– Intense, driving feelings.
– Oversimplifying/black-and-white thinking.
– Poor sleep. Trouble waking up. Hel-lo!
Is it just me, or is there a wee bit of overlap here?
Classically, ADD (or ADHD, or AD(optionalH)D) is not considered an aquired disease. However, I noticed that the parts of the brain that ARE distorted in ADD are some of the same parts of the brain that GET distorted in CRPS — and perhaps in other types of chronic pain.
We aren’t making these symptons up. We struggle mightily to keep our symptoms under some kind of control, but the worse this particular family of symptoms gets, the closer it gets to impossible to keep it under control.
Fortunately, ADD (et alia) has been treated successfully for years. The meds used overlap with meds used for neuropathic pain, depression and dysautonomia (because it’s all about regulated nerve signaling); the techniques overlap with the techniques for handling CRPS, dysautonomia and chronic pain (see my last two posts); and the therapy follow-up ties into the fact that ongoing counselling is part of the gold standard of treatment for CRPS, and darn well should be for chronic pain.
This is solvable. Let’s get our brains back, because life is too short for this to be allowed to continue.
When I get my scientific studies lined up, I’ll rewrite this for my bioscience blog. Feel free to take it to your doctor.
We can do this.
Meanwhile, borrow a couple of books like “you mean I’m not lazy, stupid or crazy?” and “delivered from distraction”, and see if it doesn’t take a load off your mind to recognize that there IS a way forward.
I’ve had my nose shoved up against a wall for two and a half weeks now. It’s very frustrating but it’s the nature of this disease that, at times, I’m going to get stopped in my tracks, and I may not always understand why.
I have had less energy than I do now, but I have never had less motivation. Me? Unable to start something? This is so out of character that it’s a bit like seeing Mother Teresa bite a kitten — unfathomable.
Speaking of eating, I’ve been craving sugar so intensely I have truly felt like I’d lose my mind if I didn’t eat sweets. I haven’t had serious sugar cravings for almost a decade. That was one problem I never ever thought I’d be dealing with again. That’s finally lightening up, thank goodness — and thanks to some mental judo and nutritional first-aid. I can’t take on any more weight or the pain in my feet will become unbearable, and my hips are already giving me hell.
I have great blog ideas, but getting them into words isn’t happening. No… words… come… together. This is so strange I don’t even need to elaborate. This is the first thing I’ve been able to write in weeks and it’s not a blog, it’s a tirade. Excuse me while I scream. My muscles across my shoulders and upper back are so tightly knotted I can’t do my exercises or qi gong or even more than a stroke or two of tai chi without that weird warping sensation when the muscles pull my moves awry — and then the nerves pull back and howl. Some activity would be better than none, but low as that bar is, I just can’t make it over.
I got a break from my muscles last night when I loaded up on Flexeril (if you follow this blog, you know it’s almost unheard-of for me to hit the CNS-affecting meds) but the lethargy, brain fog and stupidity this caused, for 18 hours afterwards, is hideously limiting in itself.
After trying to do my most basic stretches just now, I took another dose. I will NOT let this twisty locked-up posture become the new normal.
And somehow, nevertheless, I will function tomorrow enough to get my pills and get my gear and get my food for the day and get my sorry ass over to OT and PT and hope something can break through this maddeningly comprehensive barricade.
Needless to say, this is not my usual pleasant, mindful, lemons-into-lemonade sort of post.
This is me grabbing the damn lemons and throwing them right back, hoping to hear a few screams as they connect.
In the fullness of time, I expect I’ll be able to find a trigger, or a clue, as to what exactly started this and how to avoid it in future. I can’t see it from here, and maybe this is the start of what I dread most: The Slide, the final descent into irresistible helplessness and incompetence.
But I think not. I’m too damn angry to give it that much room.
Let’s see what happens next. My money’s on the chunky blonde with the harsh mouth and crappy attitude.
Between the stress of househunting (and the way that forces us into other families’ dreadful dramas), some really egregious motels, and too many things hanging fire for too long…
Plus taking that spirochete-assassinating, gut-grating antibiotic doxycycline for three weeks (19 days, actually; those last four pills, I almost vomited just looking at them)…
With a bit too much pain and dysautonomia for a little too long…
Amidst, of course, the infinitely complex metabolic moon dance of CRPS…
In consensus reality, this is a shot of my old marina’s night lights… but it’s a great visual metaphor for the body events of CRPS. Fling! Image c.2008
… Well, things have been better.
They could be a great deal worse, but really, they could be rather better.
I haven’t been able to keep up my kale shakes, because the indigestion is too energy-sappingly unpleasant. My sweetie made a remark the other day that gave me a clue I want to pursue: don’t mix fruits and vegetables.
I used to know that.
I’m going to try berries with kefir and nut butter as the morning shake, and kale with avocado, cabbage and broth in the evening. (And, for the record, I’ve reconfirmed that organic berries are a lot less nauseating in this hotwired system.)
This assumes, of course, that I can get all the ingredients… Handle the blender… Have a place to plug it in… And somewhere to rinse it out afterwards… In the midst of homeless upheaval and chaos… Twice a day.
Editorial comment is useless. There are times when my natural wryness is wholly inadequate to real life.