In CRPS and dysautonomia, several parts of the brain get under- or over-enthusiastic (or both, unpredictably.) It’s easy to oversimplify, but even more confusing; each part of the brain has many jobs, so I can’t say that the anterolateral cortex does one thing and the cingulate cortex another.
I can boil it down by the effects that these remappings have, though. That’s relatively simple!
So, in me, this is what happens as a result of these scrambled brain bits.
1. Obviously, pain signals don’t know when to pack it in. That’s obvious. They just keep going and going and going and going and…
2. Coordination gets impaired. I used to be freakishly well coordinated, so I don’t normally get much sympathy, but this is a bit unfair.
I had 38 years of knowing exactly where my body was in space, of being able to move without triple-checking myself, from the time I first learned to walk. Or, rather, the time I first learned to climb out of my crib. … Several months before I was steady enough on my feet to toddle, I’d do a layback (a climbing maneuver where you grab one edge of a gap with your hands and then walk your feet up the opposing surface) to get up the side of my crib…
…then rappel down the rails and crawl down the hall to my parent’s room to let them know that it was almost dawn and I was ready to play.
I also learned to jimmy the rails so they came down altogether, but that took a little longer. More engineering and upper-body strength involved, you know. (I got a bed well before I was two. They figured it was safer.)
I’m not used to living in a world where my body isn’t exactly where I think it is. I probably take more damage than someone who’s been this poorly coordinated all their lives, because there’s this huge layer of bewilderment and surprise. Not to mention lack of preparedness.
I don’t compensate for it unconsciously — I have to be very conscious about being careful bending over, walking not running down stairs, always wearing de-skids when I go outside in the snow. This requires a bit more bandwidth than just doing things as you normally would.
3. The third and most annoying thing is, my brain just LOVES to go to anxiety.
Anxiety is a bit of a circus. It pushes up my blood pressure and makes my heart beat fast, which is worrisome in itself. It makes my vision go whitish, like everything is covered in fog. All this makes it rather hard to think, to reason out whether I really have cause to be anxious.
Then my stomach starts nudging the back of my throat, which is never pleasant. I keep ginger near all the time, because Tums just make it worse and I can’t stand Rolaids or any of the others.
Then my waste systems get into a tizzy and I feel like I have to go wether I do or not. If I don’t need to go now, then I will in half an hour, because (as I’m sure you remember from anatomy class!) the adrenals sit right on the kidneys and when your adrenaline goes up, so does your kidney activity.
So, on an eventually related subject, I recently got worked up for endocrine and allergy issues. The tests are still rolling in. A couple of blood tests were funky, so I need to get screened for gynecological cancer, and I need to get checked for pancreatitis — which, with my squeaky-clean life, would be decidely, wildly, completely idiopathic — if it isn’t cancer.
Naturally, part of my brain is throwing up images of a midsection riddled with malignancies. I’ve seen a few of those, so it’s not a big stretch.
That’s it, I’m doomed.
Stomach… wait, the stomach goes with the pancreatitis.
What notion of reality am I in now? The cancer one or the anxiety one? Because I can ignore the anxiety one — OMG I might have metastatic cancer! Everything’s turning white! My heart’s going too fast! AAAUUUGHHHH —
And this is where my head starts spinning around and the pea soup comes out at projectile velocity.
Not really. It just feels like being in a horror movie sometimes.
I’m lucky. I have a sense of humor. I just think about horror tropes when this circus starts, and I snort and calm down a little bit.
I have to jump on that first lowering of tension or it spins right back up. This is the dysautonomic brain at work — getting right back to panic is the easiest thing for it to do.
If mentally reaching out for my anxiety dials and trying to turn them down doesn’t help, then the very next thing to do is yawn.
It’s an incredible tool — no bad side effects, many uses. Plus, you can do it in company.
Let me explain.
Yawning starts with pulling air into the deepest part of my lungs. I can imagine it going all the way down my spine and filling the bowl of my pelvis. My ribs reach out and stretch nicely. This deep breathing is the first key.
The second key is that my jaws open up wide, releasing that clenched set of muscles there. It’s impossible to grit teeth while yawning.
I may find myself in a yawning cycle — yawn after yawn, for a good five minutes. I figure I need it. All that oxygen, all that jaw-releasing… hard to beat.
Now that my torso, shoulders, neck, and jaws are unclenched, now that I have enough oxygen circulating to let color come back into the world … now I can begin to cope.
The first thing I do, before getting up, is check my breathing. I’ve gone back to breathing from my belly, drawing air down to where it needs to go. Good.
The next thing I check is my head and neck. My jaw muscles feel softer and my neck is flexible; I give it a stretch or two each way to check. This is good.
This is a functional situation now.
Okay, I’ve done all I can. I’ve pulled myself out of the anxiety tailspin. I’ve made the next round of appointments.
As I keep telling others, don’t borrow trouble; all I can do is get on with my life while I wait for those appointments and their results. I’ll take it from there.
It doesn’t help matters that I’m worried about friends and acquaintances who are facing verified life-threatening situations. The background anxiety makes my own triggers harder to handle. But I’ve done all I can there, too. I have to accept my limits and hope for the best for them.
It’s hard to see good people being treated like disposable objects. There’s something very wrong with that.
As a historian, I know that human societies go through these cycles where the empires get bigger, the oligarchs get out of hand, and then a lot of people die as the system falls over and much is lost, and then eventually a set of new systems arise from the rubble. Eventually some of them flourish, a few emerge as empires, and the whole cycle goes around again.
I hate being in a falling-over period of history. There is so much we could be doing that does not involve ripping people and nations apart to see how much money can be made from the minions before everyone dies.
Sadly, I don’t get to make that decision. I’m not an oligarch.
I’m used to it. I grew up in places where electric outages were common. We’d just get on with our homework or reading or tending rescued kittens’ eyes or arranging little army men or what-have-you.
If it was after dark, a parent would call out calmly, “Everyone ok?” and we’d bring our projects to the living room, saving candles by having one well-illuminated space instead of five poorly-lit ones. It was cozy. Quieter than usual. Arguments rarely started when the electricity was out. It was too pleasant to spoil.
My housemates have different experiences entirely.
I live with two adults with wicked ADD. They NEED the TV. The tech-savvy one NEEDS internet. Sleep is out of reach if they can’t numb out their brains first.
I was soaking up the peace, purring inwardly with the candle glow and the outstanding peace.
No hums, no clicks, no TV, no wifi, no human-made radiation bouncing off my spinal cord and twizzling my brain with little egg-whisks.
I loved it.
Meanwhile, my two darling family members were going quietly insane.
They tried going to sleep to take refuge in unconsciousness until their lives became bearable again.
I could hear the ends of their nerves curling and uncurling, even through the closed doors.
They’d bounce up again in ten or fifteen minutes, one upstairs and one downstairs, and I’d hear them dashing quietly around in their unnaturally quiet spaces.
I sat in the squishiest chair in the living room, curled up like a clean kitten, soaking up the peace.
I’m usually more empathetic. If I could have thought of something to help, I’d have been glad to do it. Perhaps we’ll think of something next time.
At the heartless core of my practical brain, though, I found the thought that they get the evenings that make them comfortable almost all the time — only two evenings out of the past five months haven’t been fully electrified.
I only had one evening so far this winter that was great for me. I was going to make the most of it.
I stretched out in my super comfy spot and purred.
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.
On average, it takes 2-5 days to adjust to a change in the weather. This is part of the fun and excitement of CRPS, dysautonomia, fibromyalgia, and all those lovely dysregulating diseases of pain and neurological shenanigans.
New Englanders like to say, “If you don’t like the weather, just wait a minute.” Clouds and sunshine chase each other swirlingly across the sky like teenagers at a party. Precipitation, in one form or another, is bound to happen at least twice a week.
However, up until recently, there was a pattern in the seeming chaos. October hosted the last of the 50-degree weather, December saw the first few inches of snow that really stuck, January and part of February were bloody cold, March was named Mud Month for good reason.
Bar the occasional storm front, when the barometer plunges like necklines at a Red Carpet party, I could live with that. Once it’s fall, it’s fall; once it’s winter, it stays winter, until it gets muddy, and eventually the glorious summer blesses us all and reminds us why we put up with the rest.
Over the winter holiday season, the naked (???) earth finally got dusted with snow. That quickly turned to sleet and then it froze (!!!). There were a couple of warm spells which didn’t melt the packed ice, just packed it further… we spent alternate days staggering over frozen rucks and through soggy mud, to try to maintain the dirt driveway.
Sunday, it was pushing 50 (like me), and raining cats and dogs; the ice finally melted — except for a few sneaky patches that merely absorbed the color of the sand so they could lurk, invisible, and slap down the unwary walker. Then it went down to well below freezing, and I got slapped down on a sneaky patch of ice because I forgot to wear friction doohickies on my boots. Last night, guess what? It snowed! We got almost 2 inches and we might get more.
I’m begging the weather gods to let it stay.
In the last few weeks, temperatures have seesawed between 20 degrees Fahrenheit above normal to 10 degrees below normal for this time of year (when it’s supposed to be simply bloody cold and frequently snowy.) Sometimes, we see that difference happen in one day.
So, if it takes 2-5 days to adjust to a weather change, and the weather is changing every day or three, what is a poor body supposed to do? Mine is whining. It’s just curling up in the chair and whimpering gently and steadily. It’s working so hard at handling the weather changes that showers and shampoos are something that happen to other people; there is no way this blood pressure and neurological system can take that much direct stimulus. A few swipes with a washcloth, a scarf or hat over the unwashed hair — it will have to do.
I still have to snap the leash on and drag this body outside at least once a day, but it’s duty, not fun. I’m sure I’m better for it afterwards — but I still climb straight back into the squishy chair, and let my body whimper for a bit.
The meteorologists on TV refer often to “the El Niño” effect, which makes me laugh. I’m pushing 50, remember? I’ve been through a lot of El Niño years, on both coasts. This isn’t El Niño. This is a huge bloody shift in the climate, and I don’t know how long it’ll last or where it will leave us.
I just hope it finds some consistency from day to day. As long as I have a few days to adjust, I’ll be fine. All I want is time to do something besides listen to my cells whimper!
After breaking my own heart just before the holidays, and then lots of traveling and the sheer delight of swimming in the ocean of love I felt with my kin (lucky me!), and then coming back in once piece, and then a bumpy recovery period… my dopamine was pooped.
How do I know that? Simple. I lost touch with the usually easy-flowing sense of love for my nearest and dearest. I was not quite as interested in grabbing good moments to have some fun; I was drawn to sitting around, disaffected and lethargic. My mind was a bit fuzzy. It was pretty much impossible to control my impulses to buy things I didn’t need, but felt a need for right at the moment.
Dopamine (among other things) is used to make decisions, control impulses, get interested in things, be motivated, and feel the pull of love or other desires.
I experimented years ago with precursors to neurotransmitters, because I was having a hard time convincing doctors that addressing the neurochemical impact of the disease might lessen the neurological effects of the disease.
I know, crazy stuff. Such a weirdo.
I’m taking an SNRI which mostly does a good job, but I’ve been doing this long enough that I don’t want to crank up the meds as my first line of action. Meds are problematic, especially for me, so I keep them as a second or third line option, starting with less toxic options first.
I’ve learned that the meds need something to work on. Selective reuptake inhibitors basically affect the molecules that already exist; they can’t make new molecules of serotonin, or norepinephrine, or whatever; they can only push the ones that already exist to work harder.
I like to make sure my reuptake inhibitors have something to work on, rather than just squeezing the last of the juice out of what few molecules are there. I still trust my body to make the neurotransmitters if they have the raw materials, so I listen to my cravings and supplement accordingly, giving them the raw materials to make more neurotransmitters.
Craving starch and fat and sugar is a good indicator that I need more serotonin, so I add 5-HTP to give myself a solid, measured dose of serotonin precursor. Craving sugar and having protein quench the urge, is usually a good hint that I need more dopamine, so I take some nice clean d,l phenylalanine.
(Your mileage may vary, of course, but it turned out there was good, straightforward science behind these two simple self-checks.)
These are only two out of dozens of neurotransmitters, but they interrelate and often morph into each other sooner or later. So far, I’ve had good results with focusing on these two as the lynchpins of my neurochemical management.
Here’s a metaphor that parallels the relationship between neurotransmitter meds and neurotransmitter precursors. You can crank up the volume all you want, but if there’s nothing in the CD/MP3 player, most of what you’ll get is just noise. Precursors are the music media. Meds can be the volume control.
I stopped taking d,l phenylalanine a couple months ago because I was doing great and really wanted to reduce the number of capsules I have to choke down. For awhile, I thought things were fine, but I’m not sure they actually were… I made some very silly decisions.
Phenylalanine, found in processed (smoked or dried) meats and well-aged cheese, as well as in certain artificially-sweetened drinks, is a key precursor for the dopamine/norepinephrine set of neurotransmitters. It has been found to suppress pain at the spinal root, too. It’s used by some vets to help advanced arthritic pain in dogs.
My early experiments, when my neuro situation was getting bad, showed that 4 packets a day of that phenylalanine-rich artificial sweetener helped my mood and my pain noticeably. This persuaded my (slightly bemused) doctor to try me on SNRIs. Once I got onto the right SNRI, I’m happy to say I could get off the crazy chemical-sweetener version of the molecule. Suddenly the artificial sweetener stopped tasting good!
Anyway, to make a long story short (“Too late!”), I keep d,l phenylalanine on hand in case I need it for pain or brain. I started taking it a few days ago, in the morning, and I’m finally starting — starting! — to feel more human again. I started at a low-moderate dose, and gave it a few days to work its way in before reassessing.
I understand that many people shy away from these precursor supplements because medical conservatives don’t trust their patients to pay attention and notice what makes things better or what makes things worse. That’s often reasonable… when I was working as a nurse, 90% of my patients probably couldn’t tell if their feet were on fire without looking first. Most people are really dissociated from our bodies.
Moreover, pain patients have every reason to be! When you spend most of your time in some degree of agony, it takes nerve, practice, and stubbornness to check in on yourself and make note of what you find, in order to screen out or screen in things that might be harming and helping. I have to say, I have found it well worth the effort, overall.
Also, surprisingly, it makes the pain less oppressive to look it straight in the eye once in awhile and say, “I see you. I see exactly what, and where, you are. You don’t fool me. You are not my life. You are not my body or brain. You’re just something that gets in the way, and I can usually work around you to some degree.”
Now, here is the “caveat” part.
It is possible to over-crank your meds by cranking up the precursors; it is possible to generate too much serotonin or too much dopamine by taking too much in the way of purified precursors, and your meds will keep squeezing the most out of that excess. So yes, you need to be careful and pay attention if you’re going to try this. Don’t jump in blindly. Take some time to study up.
This is where your own research and self-awareness becomes pivotal. What will that look like? How will you handle it?
My first experience of serotonin syndrome came from an iatrogenic overdose of an SSRI. That was bad. But hey, I sure know what it feels like now! I back off on the precursor or med when I feel the slightest drift that way.
Personally, I normally cut back on the meds first, because they contribute more to the fogginess and confusion that makes life so sucky sometimes. This is how I handle it, because I am comfortable doing things like filing or nipping a bit off my pills to cut the dose down, and I know my body well enough to notice the effects.
Using these supplements appropriately — with all this awareness and empirical experiments on myself and so forth — has reduced the side effects from my meds while giving me much better pain control and a much pleasanter quality of life. That’s a huge benefit. Huge. Definitely worth the effort.
If you’re interested in doing this… be sure to research the possibilities; understand what the sources, benefits, and drawbacks can be; and learn to track your symptoms. When you feel comfortable trusting your mind to your knowledge and record-keeping skills, then experiment carefully to see what works for you.
I’m not going to patronize my readers by telling them not to take responsibility for their bodies and their knowledge base, but I’ll gladly remind you — as I’ve recently reminded myself — to keep paying attention. Whatever mistakes you make are as much yours to deal with, as your successes are yours to celebrate. I wish you all success.
Naturally, it’s a good idea to start small and work up until you notice an effect. These things rarely work instantly, so give it a few days in your system until you bump the dose up.
Just as with meds, go with M.E.D.: Minimum Effective Dose.
If you don’t know your body pretty well, it can be hard to figure out what deficiency or excess you’re dealing with. Most online definitions of these syndromes or toxicities discuss the extreme and life-threatening levels of toxicity, which are not helpful to those of us who are working out our supplementation and medication levels.
When I had serotonin syndrome, I simply didn’t care if I had anything to eat or if my laundry — or my body — got washed. Nothing mattered. The peace was outstanding, but the situation was not compatible with long-term survival. I didn’t have tachycardia, myoclonus, or tremors, and I only noticed my reactions were twitchy when my doctor did the knee-hammer thing.
This non-disastrous level of reaction matters, because this is where we have the chance to tune our levels and make our lives better instead of worse.
I took years to get to know my body’s reactions, knowing the time would pass anyway and I might as well be wiser for it. So I learned to be mindful and careful, pay attention to myself and my body’s signals, and do my homework on the foods and nutritional supplements I wanted to try. Everything has to make sense to me before I try it.
I don’t much care if a bunch of overpaid idiots agree. I care what works for me.
Currently, I’m on 500 mg a day and am noticing an improvement, although it’s a rather slow one. I now have a theory that my body can cache something in the chain between phenylalanine and dopamine, and the important thing to do is not to let that cache get too depleted. Once I’m back up to par, I may not need it all the time, but I need it often enough to keep my “backstock” up to par. Progress!
I’m going to go from once daily to twice daily on this phenylalanine, and once I get back to a tolerable baseline, go back down to once daily and stick to that at least through the winter. Then I’ll reassess, yet again, as I normally do every 6 months or so, and consider going down to every other day or so.
One thing you’ll discover in your research is why I use the d,l form of phenylalanine. Go on, check it out 🙂
Re-assessing meds and supplements a couple of times a year is just part of life now. Things change and I want to keep up! I can usually find an intelligent pharmacist to talk things over with, and those decades of tracking what happens to my body and mind serve me well when it’s time to fiddle my supplements, so I can take as little as possible for the best effect.
It would be all too easy to take dozens of supplements, because this set of diseases wears so hard on the body’s systems, from the intracellular organelles to the organs themselves — not to mention the nerves and circulation connecting it all. But that has its own pitfalls, in addition to the staggering expense. I stick to what works for me, and try to stay current on the theory of other things so I can give meaningful suggestions when people ask. Other people’s bodies are different from mine, and what works for one may be no good to another; we all have to be our own, not mad scientists, but sane ones… an interesting challenge at the best of times.
Wishing you the best of the new year. I hope it’s good to you.
I tell you from personal experience, it takes time and study and a lot of experimenting, but many have done it and I did for years.
I found that nutrition, activity/rest, and mental hygiene were the Magic Triumvirate.
Nutrition has a huge effect on what happens in our cells.
Activity re-regulates the whole CNS, while our bodies require rest and pacing to let the activity happen.
Mental hygeine encompasses meditation (sitting, yoga, tai chi, qi gong, relaxation exercises), cognitive behavioral tools (such as noticing tense postures and re-grounding and releasing them, playing chamber music or soft rock or soft jazz to calm the brain down, using lenses and mirrors to remap the brain’s crazy ideas about our bodies, biofeedback), and the art of distraction (absorbing books/shows, phone calls with friends, coloring abstract designs, doing something you enjoy, doing something productive for the neurotransmitter-boosting pat on the back you give yourself for doing it)…. all very important and useful stuff.
Learning to plug all this into daily life is a monumental task and it takes time to learn what YOU need to do, but the time will pass anyway and crps is still a full-time gig anyway, so you might as well be healthier and bether informed.
If you don’t mind one strenuous suggestion: before you take out anything, be sure you’ve plugged in something else that already helps. So, for instance, I got healthy fats (for neuroprotection) on board before I cut additives and phosphoric acid out of my diet. Those substances are neurologically addictive (“have a cola and a smile!”) and I knew from seeing people deprived of preservatives and sodas suddenly, that there’d be an unhappy withdrawal period. Once I had the coconut oil for cooking veggies, the grass-fed butter, and the olive oil & avocados going, I hardly noticed the change and didn’t even want colas or packaged food after a few weeks.
Again from experience, I suggest a combination of liver cleansing food (parsley, milk thistle, avocado hearts, dandelion, cilantro) and phosphorus-rich food (lecithin especially, mixed nuts) to calm the shift off of medications.
The liver uses phosphorus to process meds, in a process called (not surprisingly) phosphorylation. Providing plenty of raw material for phosphorylation really smoothes out medication issues for me. Lecithin has a mild, slightly buttery taste, the granules are easy to clean up after, and it makes fats (neuroprotection, remember) a lot easier on my sulky digestion.
Also tons of water, seltzer, whatever fluids you can get in. Most modern human central nervous systems are chronically dehydrated, which makes crap build up and that increases inflammatory response and pain. The bathroom breaks are time well spent: I need to get up and move a little anyway.
I blog some of my stuff here at livinganyway.com. I also recommend www.tamingthebeast.ca since she manages mast cell disease (massive drug allergies) on top of crps.
I use lemon balm (Melissa officinalis) extract for flares, and it is great for nerve inflammation. It’s been used for shingles and cold sores for millenia.
Clove oil — well diluted! — is outstanding for nerve pain.
Emu oil is good for almost every kind of pain, and absorbs amazingly. I use it by the drop, it’s so effective, and I add a bit of clove oil for good measure.
I’d add st johns wort oil as well, if I had any, because it does something remarkable to neurotransmission that smoothes out the pain.
I take neurotransmitter precursors twice daily, and they’ve been found to suppress pain signals at the spinal nerve root: 5-HTP and D,L Phenylalanine.
I also take st johns wort. I used to use it instead of neurotransmitter meds like SSRIs, SNRIs, tricyclics, etc, but now I take it alongside and I find I get better results with fewer side effects.
Epsom salt baths help with flares, pain, dysautonomia, all kinds of yuckiness. I have to be up to a bath, but when I am, it’s wonderful.
I stick to whole foods with almost no grains, healthy fats and oils, quality meat and eggs daily but not hugely, starch from root veg and stalks. I have to hit the roadside stands, membership stores, and offbrand markets, because this stuff costs rather a lot in the supermarket, but this is a great area for organic and whole food.
I did without meds for years and I’m glad I did. For someone who’s had this disease, with several complications, for 15 years, I’m in phenomenally good shape. Now I take a wee bit of an SSRI and an SNRI, and antihistamines to manage my own mast cell histrionics, and with everything together, my pain is roughly 90% managed, sensory sensitivity is down to a functional level, stamina allows me to be up for most of the day, and my dysautonomia probably 50% managed. Sadly, still not enough for a job or much of a social life, but, fortunately, I did finally get disability income and many of my friends are able to come to me 🙂
Now that I’m writing more, I find (again) that I don’t always know if I’m writing a blog post or journal entry until after the fact. (When I’m in practice, I always know ahead of time.) Naturally, the blog posts go here, and the journal entries don’t, so this is only visible at my end. However, I’m getting more journaling done, and that’s definitely good for my brain!
My partner J is learning to pace himself. He’s bit older than I am, is a bit hyperactive, and has had outrageously good health all his life. The onset of, um, late middle age is coming as a rather shocking surprise to someone whose body seemed to hold its position from 25 to 55 … and then it only took a decade or so for him to have some peace and wisdom around the fact that it’s time to act with more peace and wisdom.
Of course, in his case, he first had to find a place where acting with peace and wisdom was a survival path, rather than an invitation to younger predators.
I used to think that it didn’t much matter where I lived, that people were people and that things would work out much the same nonetheless. Boy, have I ever changed my mind about that. Some places are nice to visit, but I wouldn’t want to live there.
Back here in the North Beast, the cold snap has us both moving slowly. We’re about 2/3 done with sanding the driveway, and will take a couple days to rest until the next push on that task. It’s good to sit here in the living room all cozy and peaceful, because he’s now comfortable with doing things in episodes.
Pacing is a tough thing to learn, but it’s nice once you get it. It’s easier on those around you, too. Who knew? I never thought of that before, until I was one of those hanging around a person who paced himself successfully.
We are warm, safe, housed, fed, loved, and cherished. For all the years that none of that was true for either of us, well, we never knew this was up ahead. We had to stay alive long enough to get to this point. It wasn’t easy. I’m glad we did.
I was holding off on blogging consistently until my brain was more consistently reliable — until I had enough improvement in my mental faculties. Reason intervened, and it got through the concrete that, longstanding CRPS being what it is, that could be a very long wait. Those of you looking for solid whacks of brilliance or coherence or good judgment, consider yourselves warned. This is real life, and, whatever is left of it, it’s time to live it anyway.
And, with that said, 2015 is left in the dust.
Waiting for perfection is obviously absurd. Anything with a pulse is still imperfect. Waiting for “enough improvement” is the mental sucker-punch that hides in perfection’s shadow. It cajoles me by not being perfect, but … define “enough improvement.” — See what I mean? Mental sucker-punch!
My tea, like me, is a work in progress at the moment. I sit here letting it steep, with my patches of exposed skin singing “zippity do dah!” every time something touches them, the silver and white day rising gently through my window, my insides solidly blocking the thought of food or pills for the foreseeable future (we’ll have to negotiate that later), J coming over to hug me against his side and give a pleased giggle that we’re reallly here and really together and we made it this far, and I find a perfect moment in it.
Living anyway. That’s the point. Well done, Isy.
Happy New Year.
May your hardships be balanced by your blessings.
May your love drown your pain.
For the many of us who live unbearable lives, may you have all the courage and wit and calm to bear it and find your moments of freedom.
Whatever you’ve got to live with, live anyway, and find the peace and joy there is even in the event horizon.
My heart is with you.