On repetitive motion and avoiding CRPS

Oh boy, another brain dump … This one on how to work on getting worsening tendinitis to back off and let you get your life back.
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I’ve been through the worst possible scenario that started with this kind of overuse pain, and the worst possible things went wrong just short of amputation, and my entire life got wrecked.

Also, I was a nurse, and what with one thing and another, I think I’ve seen a lot of ways this can go. So, I do hope you’ll forgive me for offering some perspective and advice from the sharp end. It’s wholly well-intended and very much from the heart. I do not want anyone to go through a tenth of what I did.

Firstly, it’s usually possible to rehabilitate tendinitis, IF you are sufficiently wise and adult about it. (Easier said than done!)

Secondly, doing so takes time; give it 2 years, considering how widely it affects your life right now.

Keep in mind… *those two years will pass anyway.* Wouldn’t you rather be better at the end of them, rather than facing a lifetime of being handicapped in all the most fundamental and enjoyable tasks of life? Trying to live without using your hands is no way to go. Trust me on this.

It will require changes, some of them major adjustments, and some of them minor adjustments to what you already do.

There are several aspects to address, none of which are optional, but all of which have different things to try:

– Positioning during the day (when we do 95% of our activity.)
– Positioning during the night (when we do 80% of our healing!)
– Rest & recuperation time (without this, nothing improves for long.)
– Rest & recuperation physiology (nutrition & pain control.)
– Adapting life tasks to ease up on your wrists (this requires professional help to get started with, so the physical dynamics start off right and you learn what “good enough” really is and what it isn’t.)

You’re obviously a very bright and rational person, and I feel very shy about stepping forward here, but you’re doing what I did and what many people do, and smart and well-informed as you are, it’s just possible you’re overdoing to the point of damage, and that damage IS almost certainly recoverable and possibly totally preventable. It just takes a bit of time and work first, then you can get back to the best and most important things when you’re better. (Never give up on getting better.)

– Positioning during the day
Talk to your doc or physiotherapist about whether a brace would help or hurt your wrists. It depends on where the tendinitis is and what the triggers are. Alternatively, learning to tape them may be better. (I got a whole extra 6 months out of my right wrist with strategic taping.) The right structural support can change things. (As can the wrong structural support, but not in the good way.)

I assume you’ve been to your doc and have discussed that ūüôā

– Positioning during the night
Few docs know this trick (my surgeon did), but it’s absolute gold: Wrap towels around your elbows at night so you can’t bend them up in your sleep. Since >80% of recovery and healing happens during night-time sleep, the more you can protect your arm tissues during that period of time, the better. Bending them up cuts off that process. Simply cuts it off. So, unbend.

Since you have this tendinitis, there’s a ~90% chance you sleep with your hands tucked up by your face. It will take some adjustment (sure did for me) but that position is about to change. You clearly depend on your wrists too much to let this go on, so *let* the nerve and tendon pathways heal at night, and see what that does for you over time.

This one thing alone has “cured” some people of their daytime symptoms. It’s terribly important — it repays perseverence.

– Rest & recuperation time
Yup… put the hooks, needles, etc., down for a few weeks to a few months. I’m sorry, but healing takes time and there’s no shortcut to this. The good news is, the time WILL pass, and you’ll be better for it. (I wish I’d done that!!!)

The most helpful guidance on “how long?” is probably from a rehab speciallist called an occupational therapist. They’re technically similar to physiotherapists, but they focus on the mechanics, tasks, and demands of daily life. THey’re more dialed into the practical application of the larger issues that physiotherapists and physicians work in.

Since you’re still doing these things despite the pain, I figure your doc may not be *completely* up to date on just how much this is interfering with your life and activities. I’m an old nurse; I’m not wild about doctors; however, this is a great time to get re-acquainted with yours — because he or she can sign you up for OT and PT to help you rebuild your tendons without further damage, and rework the hand-tasks of life so the *overall burden* of wrist-stress is better distributed and *still* gives you time to do the things you love to do!

– Rest & recuperation physiology
Tendinitis can be solely due to overuse, or it could be due to overuse plus other factors. (E.G., I have a fairly normal variation in my radial muscle, where the edge of the muscle bundle is sharp; it wound up scraping and irritating my radial nerve so much along that edge that I had to have a chunk of the muscle cut out. I also had carpal tunnel space that was simply tiny. That had to be opened up so the nerves and tendons could fit without hurting each other.)

Basically, if something mechanical really needs to be dealt with, it’s wise to deal with it so you can get on to the good part — getting better. (I’m no fan of surgery either, but sometimes it makes sense.)

Pain makes your body tissues sticky, and sticky tissues get gummed up; gummed up tissues hurt more because they can’t move right or work right or clean themselves up properly. And round and round we go.

Thus, less pain with better hydration (to clean out the sticky stuff, quite literally) makes for better healing. Two things can have significant effects on pain — nutrition and medication.

Wild fish and grassfed butter (bring on the Kerrygold!) are known to reduce inflammation, improve metabolism, and support healing. (Conventional butter and farmed fish, sadly, do not. Long explanation r/t histological metabolism.) Produce of all colors make a huge difference in healing.

Even with a great diet… in our modern messy world, and with a fairly longstanding pain issue evolving, it’s not ideal to depend on the finite number of calories you can eat to get all the nourishment your body is hoping for. Fish oil (very fresh: Nordic Naturals and Kiva are known to have good fresh processing and delivery methods) and, of all super-easy things, vitamin C are outstanding for inflammatory pain and nerve healing. As a long-time painiac, I recommend 500-1,500 gm daily of Ester-C, because it releases itself slowly and is the most digestion-friendly vitamin C I’ve ever used. Vitamin C works by refreshing all the other antioxidants. Wonderful stuff. Your nerves are among the biggest producers and biggest users of antioxidants; right now, they need more, but can produce less, so it helps a lot to make up the deficit.

From my own standpoint, I consider a good food-based multivitamin essential, because I’ve seen in myself and in so many others just how much of a difference it makes in healing time and recovery completeness. However, I realize many have strong feelings about supplementing with multis, and I don’t want to seem contentious ūüôā

Ibuprofen/paracetamol, where you’ve got plenty of hydration and good nutrition, are terrific for reducing inflammation and knocking back the pain, of course.

– Adapting life tasks to ease up on your wrists
So you get to keep them for the rest of your life ūüôā

This is where you want to start with an Occupational/Physical Therapist, rather than doing the natural/easy thing and trying what your friends have tried.

Why’s that? Easy — because of muffled signals. Since you’ve been dealing with this for awhile, you’ve gotten pretty good at ignoring some body signals, and one thing these pros can do is help you learn *which* signals are right, and which ones can be safely ignored. Once you get the parameters in mind, then you’re better equipped to choose your own adaptive gear from there.

Having the outside pair of eyes, which are so well-educated, is a great help in readjusting life and redistributing the load on your body.

I hope that’s helpful, and I hope you don’t mind my hopping onto this so enthusiastically. It’s my mission, now that I’m on borrowed time, not to let anyone else endure any of the horrors I did

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Losing Our Angels to Suicide

A friend I’ll call A died of suicide last night. It’s easy to say of people that they are rare and radiant souls once they’re gone, but A is the sort of person who was generally agreed to be a rare and radiant soul even when she was alive. Pretty angelic, really.

Suicide is a tough gig for all concerned, but being suicidal is living¬†hell. I’m going to try to present some information in an accessible way, but this is an emotional time (it’s also deathiversary season for some of the biggest losses in my life, and there have been more deaths than usual this winter) …¬†I’m very upset and very angry. It’s liable to show. Anyway, here goes…

Most of the time (not all the time), the deed that causes self-death is impulsive, which is the point of the 3-day hold in psychiatric hospitals: get them over that bump, then their coping skills come back, and then they find a way forward.

In cases like A’s, some survivors want to know why our loved one didn’t reach out, didn’t let us know ahead of time. Some want to know why this person “didn’t love us enough to stay.”
That’s a common feeling after suicide. These are all very common responses. Thing is, they miss the causative point.

Reality check

Here’s the thing:

Stop being so selfish!

It’s NOT ABOUT YOU. This is a tough one to swallow because you’re the one left alive and hurting, but it’s something to be faced in order to understand how this could happen.

It’s about being in so much pain that continuing is intolerable and there is no way this person can find to make it stop. Can you even imagine that? If not, then who are you to judge? If you can, then why are you blaming the victim?

Do you think she didn’t try hard enough, or know enough to battle this more effectively?

Actually, that’s a fair question. Some people don’t know enough, and need the chance to breathe, reboot, and find another way forward. (Most people who attempt suicide fall into this category.) It’s not an unreasonable thing to ask, so let’s look into that.

Some things can’t be fixed

My lovely friend A was a sophisticated, educated, well-informed consumer of, and professional in, the health care industry and effective alternative therapies. She really knew her way around.

I have a pain disease that, if I have to be truthful, hurts more every year. I’ve had over 15 years to ramp up to my present level of unthinkable, brain-blistering agony — and to find ways to manage it along the way. I can kid my mind most of the time that the pain is hardly there. I’m not likely to kill myself any time this year, though I might get flattened by a bus in a fit of absent-mindedness due to masking too much pain… you never know. (I’ll keep wearing bright colors and getting assistance around town, so don’t worry unduly, Mom!)

My friend A had a painful condition evolve recently that wouldn’t budge despite much work, and a surgery with… interesting characteristics. I sure don’t need to spell that out for those of you who’ve had, cared for, or performed surgeries. One of her main nerve branches was involved, which tells you the rest. It was risky, tough, and fraught. She knew that. Surgery was the only way to avoid the dreadful situation she faced if she didn’t have it.

By the time she made her last tragic decision, A could easily have been in a level of pain comparable to what I live with, but she did not have 15 years to ramp up. Most of that mountain of agony landed on her inside of a few weeks.

She knew what was going on in her body and worked for years to correct it without surgery.

She knew what the surgery might result in and she tried it anyway.

She knew her options.

She knew what to do to mitigate risk and optimize healing.

It’s likely¬†that she did everything that could possibly be done.

It’s¬†likely¬†that there was too much pain and no way to escape it.

Sometimes, some things can’t be fixed.

I respect her choice. I hate it, it makes me miserable, but given the circumstances, I respect her choice as I respect her right to make it.

I don’t blame A. I wish that things had been different for her.

Please remember the compassion that was at the core of her spiritual and professional life, and return it to her as well as you can. She may need your compassion more than ever, because the end of her life was so awful, and she worked and fought so hard to make it.

She loved you. She loved us all, in her endless outpouring of loving-kindness and intelligence and determination. Please, try to give some of that back to her, now when it’s no longer easy.

Step Up

Of course you’re angry to lose wonderful people to suicide. Want to do something about that?

  • Vote for universal health care, so people like A can get timely care and prevent minor issues from becoming major ones and then becoming deadly nightmares. Because this should not have happened in the first place.
  • Lobby for universal housing and emergency accommodations in every state, so people like my brilliant¬†friend Cross don’t have to choose between being murdered by a caregiver or taking their own lives, because NO OTHER OPTIONS EXIST.
  • Get your elected representatives¬†to re-fund, and stop de-funding, mental health services and social safety nets, so my gifted friend Ethan didn’t have to shoot himself in the head to make the PTSD nightmares stop. Every dollar spent on these programs saves between 10 and 800 dollars in the costs of cleaning up the failures resulting from their absence. Our economy cannot afford that kind of constant, suppurating¬†loss.

YOUR VOTING RECORD AFFECTS THE SURVIVAL OF THOSE YOU LOVE.

Don’t step¬†into the voting box in the hope of choosing your next drinking buddy; the POTUS will never drop in at your neighborhood dive. Try to remember you’re voting for your next Chief Executive. This needs to be someone who’s smart enough and wise enough to do the job of leading a huge country that’s in serious trouble.

If you feel that, against reason and compassion, against economics and decency, you really have to vote against these policies or vote in those who oppose them, then don’t EVER complain to me about losing people you love to suicide, or maltreated illness, or poverty, or homelessness. These deaths are optional 99.9% of the time, and I have absolutely had enough of them!

This worm has turned

I used to be vigorously opposed to suicide. I spent too many hours coding people who had no choice about whether they lived or died, so that the occasional attempted suicides I treated in the ER just made the bile rise in my throat. Those idiots were bloody well going to live whether they liked it or not, and if they reached consciousness, they were getting a short and fiery talking-to from a short and fiery RN.

One day, I confided my thoughts to a longtime trauma counselor. She stopped me dead when she said, with great pain and exquisite kindness, “They do that because they can’t think of any other way to stop the pain.”

I tried to imagine so much pain and so much trapped-ness… and I couldn’t hate them any more.

And then, years later, I developed CRPS… then fibromyalgia… then dysautonomia… and, this week, I’m getting screened for a couple of cancers.

Those of you who follow this blog know that I spent a few years clinging to life by a thread. The pain, disability, and relentless, pounding losses and brutality of the world on the suddenly-disabled, on top of an ongoing roster of bereavements around me, very nearly finished me.

I was suicidal for some of that, only I was not going to screw it up; if I did it, I was going to do it properly. So there were no attempts, there was a thorough exploration of the idea. (At the very bottom of my personal root¬†under¬†the final level of Hell, I found … curiosity. I could not rest until I found out how this story went. Not only would¬†I miss my funeral by several days,¬†I’d never find out if we got a cure in my natural lifetime, if I ever figured out how to blog, what exactly CRPS is, who I had yet to meet, or anything. That was more unbearable than pain¬†for me: unsatisfied narrative curiosity. I can’t explain¬†it, I can only report it. I’m still working out how to crash my funeral.)

The point is, I’m pretty familiar with the landscape of endless pain.

I understand, with diamond-sharp clarity, that there is a point where a person simply shouldn’t have to put up with any more.

I know, as I never did in the innocence of my ER days, that there is such a thing as No More Options.

The word “unbearable” is no longer just an adjective; it has real meaning. Some things should not be borne, and that’s bad enough, but some things really cannot be borne. What then? Do we turn our backs and shrug, feeling we’ve done our jobs?

Those who’ve survived the suicide of someone you loved, you have my absolutely heartfelt sympathy. It’s awful, peculiarly and specially awful. There’s nothing like it.

If you’re really outraged, turn your anger onto a suitable target: the systemic failure that made that cherished person’s life unlivable.

That would honor them, in a remarkably constructive way.

I’m off to make sure I’m registered to vote tomorrow. I don’t want to sit this one out. I’m torn up and miserable, and I want to honor the memory of A and all my dear departed angels.

How

I

miss

you.

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My preparation and self-care for surgeries and injuries

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 ūüôā

NUTRITION

One leg of my Holy Trinity of Healing: Nutrition, Activity, Rest.

ANTIOXIDANTS

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.

FURTHER NUTRITION

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
  • Irwin Naturals
  • 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:

  • Jarrow
  • Pure Formulas
  • Doctor’s Best
  • Ester-C

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.

RECOVERY

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.

Bones

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? ūüôā

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.

Mental Rehearsal
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.

Brushing
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.

FOOD

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.

Final Notes

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.

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