“Never give up. Never surrender.”
Leonidas of Sparta, Jael the wife of Heber, Alexander the Great, Queen Boudicca, Mary Magdalen, the Prophet Mohammed, Hildegaard of Bingen, Vlad the Impaler, Queen Isabel of Spain, Geronimo, Copernicus, Marie Curie, Winston Churchill, Aung Suun Kyi, Terry Pratchett, the 14th and Final Dalai Lama…
Rest and retreat, yes.
Pause for thought, please (unlike some of those listed above.)
Knowing when to acquire a sense of proportion, ideally (again, unlike some of those listed above.)
But… don’t give up. Don’t give your rightful self away.
It’s always been easy for me to be determined, but not easy to pick the right things to be determined about.
In my 20’s, I wanted to save the world.
In my 30’s, I was willing to work only on that part of it that wanted my saving.
In most of my 40’s, I was dying — sometimes by inches, sometimes by yards — and couldn’t quite save myself.
I’m 50; what a relief!
Given that trajectory, it’s no wonder that my priorities have shifted a little.
I figure that, as long as I have working pulse and respirations, I’ve got a job to do. (I suspect everyone does, but I could be wrong.) My particular job is to re-possess my physical self, and, given enough slack, help others to re-possess theirs.
Our bodies are not just machines, despite the inherent dis-inheritance proposed by Descartes (considering the body a separate entity from awareness), and the even more extreme model funded and fomented by a slightly misguided Hearst (who fell in love with interventionism, and drove the mechanical-problem-to-be-fixed model of medicine over the shifting-dysfunction-to-right-function model of medicine.)
Bodies are the media we experience life through, the means we have to respond with. Despite the relentlessly shallow concerns over appearance the media saturates our lives with, our fundamental experiences of life are not just seen. Life is an all-body experience.
Bodies are marvelously self-aware organisms on an enduring quest to care for and maintain themselves by communicating as effectively as possible within themselves, and responding as usefully as possible at every level — within the cells, between the cells, from cells to organs and back again — with the marvelously alert circuitry of the nervous system and the dazzlingly subtle chemical dance of the endocrine system drawing the whole show together.
That’s a bit more complex than just meat-sacks wrapped in hide.
I’ve been mulling the twined facts that my body is an amazingly tough, brilliantly adaptable organism, and at the same time, is an organism constantly under sieges both subtle and overwhelming. Yet it never stops trying to find a useful set of responses, it never stops signaling and listening.
It never gives up. It has never surrendered.
I admire that.
Just for grits and shins, here are a few other things that I mutter to myself over and over.
C’mon, you can do it.
Motion is lotion.
Use it or lose it.
Change or die.
That’s quite a set, when I look at it laid out like that.
Not all of them are cheerful. Sorry.
They’re all thoroughly grounded in my reality, though, and they all have had something to do with my getting this far. They are hammers and screwdrivers in my mental toolkit of radical presence, pushing back on neuroplasticity, and not settling for what this disease would leave me.
Naturally, I say these things to myself in tones of firm, loving parental authority, since it’s all about re-re-plasticizing my brain, and those are the tones it responds to.
FTR, I’m sincerely glad it responds at all. When I was in nursing school, they told us adult brains were fixed for life. I doubted that from the start, and events eventually caught up with my skepticism. Brain plasticity FTW!
I have loads of advice for surgery and invasive procedures, so I might as well park it in one place. I used to be an RN and I’ve had this monster for over 15 years so I’ll share the key things I know, and others can add more about what they’ve tried or heard about 🙂
One leg of my Holy Trinity of Healing: Nutrition, Activity, Rest.
With nerve or mitochondrial diseases, antioxidant support is absolutely critical and vitamin C is the cheapest, most bio-available antioxidant. It’s very straightforward — it basically works by refreshing and rebooting the others. The vitamin C protocols for surgeries and procedures with CRPS are simple:
500 MG per dose (more than that, and especially a fragile system will get overwhelmed and throw the whole lot away)
2 to 3 doses per day (2 doses for upper limbs, 3 doses for trunk and lower limbs)
Start up to 2 weeks before surgery
Continue for 3 months (12 weeks) after surgery
Have you had your D3 levels checked? If you’re chronically ill, do so. It’s becoming clear (finally) how crucial this is and how much of it our bodies need in chronic conditions.
D3 is critical for healing, especially joint and bone healing, as well as helping our calcium stay in bones and teeth, helping our skin, and maintaining soft tissue integrity. Get that checked when you can, but if you aren’t already taking it, get started. Something is better than nothing. Raise your dose until your serum vitamin D3 is well within normal range. This is important. The test is relatively cheap and easy to get.
Speaking from decades of clinical and personal experience, I’d add that this is the time to invest in a good, food-based multivitamin and take it with breakfast and lunch every day from now to at least 3 months after your procedure. After years of home care and being a patient myself, I have found nothing — absolutely nothing! — that speeds healing and reduces complications like really good vitamins. It’s like magic. Also, some science is beginning to emerge about the value of nutrition in handling CRPS.
I get my vitamins from vitacost.com, which has wholesale prices and lightning fast shipping, or luckyvitamin.com which has one week delivery. Amazon can sometimes meet those prices, and of course they make it very easy to give them your money.
The brands I can recommend are the capsule (not tablet) forms of:
RAW Vitamin Code (what I use), a Garden of Life line
Garden of Life “My Kind” may be good; it’s new and I haven’t tried it, but its sister line is great.
NOW is normally ok, but it’s not something I’d recommend around a procedure. They’re great for the price, but not top tier. Their multis are tablets which are noticeably harder for fussy systems to handle.
For targeted supplements (Calcium, 5-HTP, DL phenylalanine, magnesium chelates, etc.) I use and recommend (as of 5/2017) these brands:
Several other food-based vitamins used to be great but they got bought and really dropped in quality as the parent company squeezed their profits.
Several very famous brands, which I’m not lawyered-up enough to mention, are an absolute waste of money — go to the library and check out the issue of Consumer Reports where they investigated those.
Basically… don’t buy anything you can get in a major pharmacy. When it comes to meds, I always suggest discussing meds with your pharmacist, but when it comes to vitamins, the brands available to them are frauds with great advertising budgets, and they aren’t allowed to say so even if they know it.
Talk this over with a chronically ill person who is a vitamin geek, if you want more recommendations. Some health food stores have good vitamin geeks on staff. Ask around.
This is based on the 12-week period that covers most procedures and most traumatic injury-healing. This is not for everyone, it’s not comprehensive, it’s just a generic brain-dump from one former RN and current chronic patient. If you’re planning to use this as a guideline, PLEASE take this into your doctor and highlight the bits that matter to you, so you can get a sanity check from the person who’s actually aware of your particular case and is guiding your care.
If your doctor expects less than 12 weeks, smile politely, bless their optimism, and plan for 12 weeks of intensive self-care as the better part of wisdom.
If your doctor expects more than 12 weeks, BELIEVE YOUR DOCTOR. If they tell you to stay in bed for a year, then the survival path and the wise thing to do is to stay in bed for a year. They simply don’t want you horizontal for any longer than strictly necessary, so take them seriously and don’t finesse it. Just don’t even go there. They’ll get you up the very minute it’s even vaguely safe.
Since spoonies are more likely than normal people to have a longer healing period, plan accordingly and mentally prepare a Plan B that includes yet another 25-50% of rehabilitation and recovery time. For each day in bed, figure it will take 1-3 days of activity to recover afterwards, depending on your basic fitness and cardiovascular tone.
It’s okay, don’t let the numbers scare you. I just button on my pig-headedness so it faces the right way, and make myself do the long, slow slog of building back up again. It’s hard work, but the time will pass anyway, and I want to be better at the end of it.
You are not a normal patient, if you already have something like CRPS. Don’t panic; there are lots of abnormal patients out there! You’re not alone. Just plan wisely.
EARLY RECOVERY PERIOD
Early recovery is a bear, but it doesn’t last long. Some things we just have to white-knuckle our way through, one breath at a time. Early recovery may be one of them. It will pass.
At this point, a certain amount of swelling is good and helpful, because it keeps the area flushed with nourishment and growth cells.
Keep your affected body part ABOVE HEART LEVEL if at all possible, to allow the “used” fluid to drain out. Your heart should be able to push the blood up that slope (dysautonomiacs and those with existing circulatory issues, watch this closely), but your body needs a gravity-assist to help it come back down. It also helps keep the pain down. Letting a healing limb hang below heart level will usually immediately increase your pain.
This is where you corral all the pillows you can get your hands on so that, during recovery, you can park that puppy up there and put your head down to lower the bar even further.
Work out a pain management policy in advance with your doctor, so you have a Plan A, B, and C for managing different levels of pain after surgery.
If you’ve had to go to the ER for pain crises before, then ask your doctor to contact the ER and arrange a patient-specific set of interventions for you in case you have an after-hours crisis after surgery. This should ideally:
Be time-limited to the post-surgical period,
Cover both pain and infection and whatever other surgery-specific complications are most likely, and
Indicate when/whether they should call your doctor/surgeon.)
This will save a whole lot of time and fuss, and would make me feel a lot safer about the post surgical period.
Not all ERs make it easy to do that, but you’d be amazed how much silliness a bit of surgeon’s bluster can cut through. The ER will find a way to capture and recall that information all right. They just need a little push sometimes.
Speaking as an old ER nurse, I felt a lot better about treating a chronic patient in crisis according to their specialist’s or surgeon’s requirements, than us having to figure out something so fraught on our own.
Pain crisis and post-surgical emergency protocols tailored to the chronically ill patient are a huge benefit to everyone involved.
There should also be a limit on how many ER visits before your surgeon gets called in, because if you need more than one (maybe 2 on the weekend) then you really need to be seen again by the surgeon on an emergency basis, since something may be wrong with the surgery.
Bones and joints
Those of you with bone and joint trauma or surgery, please be aware that the number 1 cause of non-healing bones is… using the darn things! Here’s the lowdown on fracture (and ligament) recovery:
For the first ~3-5 days, the “callus” is forming. This is the foundation of all the healing that happens after. There is no substitute. This is when there is the most swelling, and there needs to be: there isn’t much blood flow inside bones or connective tissue, so this is the best substitute. Extra hydration (to keep things moving through my tissues) and basic nourishment, featuring vitamins, antioxidants, and digestible protein, is my appropriate dietary focus.
For the next couple weeks, “knitting” is happening. The fractured ends are reaching across the nourished gap and, strand by strand, are pulling together. There’s no hurrying this process, but it’s easy enough to disrupt it, so keep staying off it. Supplementation with bio-available calcium (food-based sources are usually the easiest for the body to get hold of and integrate) with vitamin D, magnesium, and (according to some studies) boron and strontium, can be a real help with rebuilding the bone. I take phosphorus in the middle of the day, because it should not be released into my gut at the same time as calcium, because it’ll block it from being taken in. I take calcium, D, and the other bone-building supplements morning and night.
For the rest of the healing time, the bone break is turning that knitted lattice into solid bone which you will eventually be able to use normally again. I keep up the vitamin and mineral supplementation above, and, trust me, I did absolutely whatever it took to STAY OFF THAT FRACTURE until the bone had gone through its full healing cycle.
After that, it’s just rehab. That takes patience, pacing, and diligence, plus more pain that before, but normally, with the antioxidants and hydration and pacing, it does pass and the bone and muscle are all right at the end of it.
Ligaments take time. They don’t naturally have much blood supply, so they don’t heal quickly. However, with time, nutrition, diligence, and with moving enough to provide as much blood flow to surrounding tissues as your condition permits, these will normally come back in time too. Remember to go easy on that joint’s over-flexion and strain for a couple of years, because it won’t have the old elastic strength for some time.
Organ surgery and trauma
Abdominal surgery usually requires a coughing pillow, to protect healing and allow you to cough and clear your lungs without hurting yourself. (See the part on scar management.) The nurses should set you up with one, but any small, very firm pillow — or a bathtowel folded and taped into shape — will do the job.
Post surgical care for abdominal surgery boils down to:
Keeping your lungs working well. If you can’t breathe well, then you can’t do well. Simple as that.
Keeping your drains — natural and surgical — as clear as possible. (Tips: farts are good! Poop is great! Urine is the key to life!)
Keep moving in small, frequent bursts, so you heal faster — and to help with the previous bullet point.
And, for us painiacs, we add:
Managing pain, so the other stuff (breathing, excreting, moving) is more manageable in turn, and we don’t come out of it worse than when we went in.
You will be discharged with specific instructions about food, fluid, medications, antibiotics, wound care, and so on. FOLLOW THEM.
I know — antibiotics suck and it takes weeks of probiotics and soluble fiber and maybe Senakot to get our guts back in shape. However, the pathogens that can grow in there are far, far worse; finish your antibiotics and kill them dead.Then take the time to rebuild your gut.
I’d love to be able to say otherwise, but that’s the way it is these days; we as a society have to stop creating resistant organisms, and that starts with the ones we, as patients, treat in ourselves.
FIRST 6 WEEKS
The first 6 weeks is the “knitting” part, or, in joint replacement, the part where the bones bind onto the joint insert and make it part of your body.
Keep a close eye on your surgical area for signs of infection or rejection. Be sure your surgeon discusses this in advance so you’re prepared to take the right meds (might be as simple as Benadryl and Advil) at THE FIRST sign of trouble.
For these 6 weeks, the bone care and the skin/nerve care diverge.
With bone fractures or bone surgeries, NO STRAINING OR BEARING WEIGHT on that part. Do your prescribed physiotherapy if you have any, but don’t go *one ounce* over the line. Pushing it now is the surest way to screw up your healing and have a much bigger and longer-lasting problem.
Just stay completely off the darn thing, ok? Doesn’t matter what it takes.
I’m speaking as someone who crawled to the bathroom on 3 CRPSy limbs (think walking on hands and knees over live coals with hot electric wires sticking out of them, no kidding), 5-6 times a day, for this entire length of time, due to a broken foot. It sucked, but I did it. It was a nightmare and I’d rather shoot myself in the head than go through it again, but I did it, because that’s what it takes to get the bone to knit.
STAY OFF IT. Seriously. Just STAY OFF IT. Figure out how to make that happen, for 6 (in some cases, 8) whole weeks. The time will pass whatever you do, but you’d rather have one less major problem at the end of it, right?
Soft Tissue and Scarring
I scar quickly. This used to be a good thing.
Most scar tissue is laid down in the first 12 weeks, and 50% of that is laid down in the first … I forget.. 2 weeks, or 4? Like I said, my healing rate is odd, so I’m not sure what the usual numbers are.
The first stage of scarring needs to happen as undisturbed as possible, so your tissues can be closed up and the integrity of skin and organs and so forth can be maintained. However, after the first stage (which is when the surgical splints come off), it’s time to start managing the scarring, so that the tissue comes back as close to normal as possible.
Scar tissue is more brittle than regular tissue, especially if left to its own devices. If scar tissue is managed correctly, 3 things will happen:
There will be minimal brittle scar tissue, with minimal risk of subsequent tearing and re-injury.
Regular tissue will grow in and restore normal function, circulation, and flexibility, leaving only a little brittle scar tissue.
Underlying structures, like nerves,vessels, and ligaments, will not be trapped in the scar tissue, so they can continue to function normally.
If scar tissue gets out of hand, those good things don’t happen. And then you have more problems: tearing and re-injury, stiffness and limitations, reduced function in that body part, or, as in my case, nerves and other structures getting completely tied up and trapped in scar tissue (in record time.) Any of these is a whole new set of problems with added complications waiting to pile on.
Some Occupational and Physical Therapists specialize in scar management. Stretching, gentle massage, deeper massage after a certain length of time, silicon pads, heat therapy, bead therapy — they have tons of good tricks up their sleeves.
Case study: Me
I had come out of the post-surgical splint with 4 degrees of motion in my wrist. (That’s not a typo. Check that on a protractor.) Because I was still in the acute-healing phase, the scar tissue was being laid down faster than we could manage it, and if we didn’t have substantial improvement by Week 8 after surgery, I was looking at painful splints and possibly more surgery to loosen up my wrist/forearm so I could use it again.
A warm pack and pain meds, followed in half an hour by diligent massage and stretching for 10 to 20 minutes, three to five times a day, with a silicone pad on it otherwise, was my routine for over a month. I watched a lot of movies to distract from the horrible pain and keep going, because I couldn’t take narcotics — they had hospitalized me with life-threatening side effects.
That’s probably what sealed my fate with CRPS: ineffective and even toxic post-surgical pain control followed by months of brutal rehab with continuing ineffective pain control. We didn’t have a Vitamin C Protocol for hand surgery then, so I didn’t know to take additional antioxidants, the one thing shown to reduce post-surgical CRPS.
Sure wish I’d known that then! It’s so simple, so cheap, so effective!
My wrist has never totally regained all its flexibility, but it used to be freakishly flexible, so it’s technically all right now.
The caution and care you take in these first six weeks will pay off HUGELY. Put your natural stubbornness and self-sufficiency (which most spoonies have a LOT of) in the service of your healing for a month and a half, ok? 🙂
SECOND 6 WEEKS
Now, if things have callused well and knitted properly, the second half of the “12-week healing circus” gets more interesting. This is when you gently and persistently put that part of your body back in service, and remind the nerves there that their job is not to be hysterical and overly dramatic, but to report only/exactly what’s really there. Seriously. It’s a bit like self hypnosis. One great technique is in the “Mental Rehearsal” heading.
Another is a dry version of the Epsom baths described here. Keep in mind that you can use a washcloth or soft cloth dunked in Epsom solution instead of taking a bath, in order to benefit from the de-programming and re-programming you can do on your body in this way.
This period is crucial because that’s when 80-90% of the healing is completed. So, this is why the vitamin protocols, physiotherapy, and medical care really focus on that period. Problems are best found early in this period, so they can be fixed, mitigated, or worked around.
It’s not short, but it is finite!
PHYSIOTHERAPY AND REHABILITATION
Do what you can to get the best rehab possible, and be as communicative and involved as you can. Remember, whether you like your rehab professionals personally is not the point; it’s simply a question of whether you can communicate with them and get the care that you need. If you can’t communicate with them despite your best efforts, change therapists. There has to be 2-way feedback — especially with the tricky cases that we always are — or else it’s not a therapeutic situation.
Retrain the Pain
There are several ways to manage how the CRPS brain mis-handles the new pain information. These are different ways of hacking into the ways that the disease grabs the part of your brain that corresponds to the part of your body that CRPS wants to climb into.
Naturally, there are no guarantees, but mental-plasticity techniques can be hugely helpful.
When you are using that limb in the rehab stage, mentally practice the motion first, playing it out painlessly in your mind. Imagine the whole motion going perfectly comfortably. Then do the motion. If this doesn’t go well, work with your physical therapist on details of the technique (there are several ways to conduct the imaginary and real movements) and figure out what works best for you. Persistence is key in rehab.
The point is to make the movement you mentally practice as realistic as possible, as much like the real motion as possible, and have it be painless and comfortable in your mind when you practice it. Keep doing the mental rehearsal before the movement, and refine the mental rehearsal until you can predict the shape of your movements fairly exactly. This was one of the best tricks I ever learned for de-programming my body’s pain responses and getting back a TON of function.
If done wrong, it can have pretty much the opposite effect, so go carefully and find good guidance if it’s not easy for you.
This is kind of like acting out a metaphor, and that metaphor communicates with the body-mapping parts of the brain in a way it’s hard for them to ignore.
I find it makes a big difference if I approach all this with an attitude of parental authority toward my own body. I can’t control my body completely, just as a parent can’t completely control a child, who really is a separate entity; but a parent can exert a great deal of influence, when they do so with tones of loving, generous, insistent declaration.
“This is best for you, and I know that, and what happens to you matters, so do this and we’ll go from there.”
For paraesthesias — the garbage-can term meaning “weird skin sensations”, including numbness, tingling, or allodynia — I simply stroke from a non-weird area into the weird area.
I pay attention while I’m doing that, mentally pushing the non-weirdness into the weird area, and telling the weird area to pay attention because this is what “normal” feels like and “normal” is the appropriate way to feel. Kindly persistence is key.
Every now and then, I hear Jim Carrey’s character talking to his dog Milo. This clip isn’t in English, but somehow the meaning comes through in the first minute: “Come here, Milo… Come on, there’s a good boy… You can do it… PUT SOME EFFORT INTO IT!”
PAIN REHABILITATION can take longer than 12 weeks! Keep at it
Be patient. Be diligent. Above all, don’t give up. It just takes time (months or years in some cases) but it can usually be done, and the time will pass either way so you might as well have something to show for it.
Keep working on it. Mental rehearsal, brushing, self-hypnosis, calming meditation, Epsom baths, vitamins, etc. It all helps. Keep at it.
If you don’t already have a good pain psychologist, this is the time to get that referral. Pain psychologists have special training around understanding how pain impacts the brain, and how this, in turn, affects our feelings and behavior, and what we can do about that. Most importantly, they have special training about how to use the characteristics of the brain to better our frames of mind under varying stresses. It’s pretty brilliant.
There is a ton of good science on how we can learn to use our minds to improve our lives, and pain psychologists are the ones trained in how to identify our strengths and struggles and train us as individuals in using the tools that can benefit us the best.
NUTS-AND-BOLTS PREPARATION FOR PROCEDURES AND SURGERIES
Basic activities of life have to go on… So, plan ahead, clear the decks for action, and prepare some things ahead of time so that you have less to flail about when the time comes.
You need to be able to get a meal with minimum effort for a couple of weeks. Before surgery, stock up on easy food. For me at my surgeries, that was apples and nut butter, nitrate-free cold cuts and veggie chips, romaine lettuce and Cabot Extra Sharp cheddar — which I slice and bag up ahead of time. Trader Joe’s and good grocery stores often have pre-made wraps, soups & salads, and good frozen meals. For normal people with fewer allergies, it’s probably instant soups and microwaveable food. Whatever works for you. As long as you’re taking your vitamins, packaged food may be a reasonable compromise within your limits.
Say it with me: “Do what works for you.”
Clean clothes and sheets
Also, catch up on laundry and get rid of any “stupid problems” around the house — a door that makes you fight with it, a sink stopper that doesn’t work, a rug that always catches your foot. Fix the door, pull out the broken stopper and replace it with one from the dollar store, and get rid of the rug. I hate those kinds of rugs. (Old trauma nurse, remember.)
Making a “day nest”
If you don’t already have one, set up a “day nest” at home. It’s absolutely essential to get out of bed every day if possible, because it’s much better for your brain, but for awhile you won’t be up to much more. Make a comfortable place to lounge and watch tv, with your body-part up, some kind of toileting you can get to, and your comfort kit handy (books, comics, hot water bottle, meds, snacks, etc.) for hours at a time.
Personal hygeine (sigh)
You’ll need to waterproof that body part for bathing and showering. You may need back scrubbers and other reaching aids to get clean, too. At certain times, a wet washcloth may be the best you can do, so make it easy to reach the washcloth, soap, and a manageable towel.
Try to work this out ahead of time. Give yourself slack for different levels of ability: washcloth while sitting on the toilet, soaking in the bath with the body part perched on the rim, showering in a chair or stool, or standing under the running water. Remember to figure out how to clean and manage your hair.
Having this mapped out ahead of time simplifies the hygeine. For another, it’s powerfully healing to know that you’re taking good care of yourself.
The first few days are… special
I find that the first 2-3 days are too bewildering and painful to handle alone. After that, I’d begun to learn how to change position, dress, and wipe myself adequately (hey, that’s important!) and the IV site had healed.
If you’re on your own normally, try to find a helpful friend to stay with (or ask them to stay with you) for the first 2-3 days. All you need is someone to remind you that there’s life outside this, to pass your meds and a tissue, and, if necessary, call an ambulance to get you to the ER. Simple enough.
If you’re facing surgery or invasive procedures or a major injury, you’ve got a tough gig ahead of you, but you can manage it. I’d be wetting myself with anxiety if I had to face that again, but I’d do all this stuff anyway because I know it works.
Now, having said that, this is the part where I have to insert the reminder that I am not a doctor, I have not examined my readers, and I have no business making diagnoses or conducting treatments on them.
Since I’m a pretty straightforward old cuss, I’ll add that it’s your own body anyway and you have to do your own homework, follow your own inner promptings, and take responsibility for the choices you make accordingly.
May all things go well for you, especially recovery.