Handling my hinges

I had a day off from driving around. After wonderfully quiet morning, I took a walk to the nearest park, half a mile away. The mistletoe was going like gangbusters:

It was shocking to realize how much the tendons in front of my hips had shortened. I had to use a bit of the washing-machine action through the hips, to get a stride more than a couple feet long.

That’s way too hard on the cartilage, so once the washing machine warmed me up enough to stretch without injury, I stretched enough to let me take a tolerable stride without grinding my knees.

There’s only so much my tendons will release, in one careful stretching period. There’s quite a bit of work ahead of me.

I really haven’t been taking position seriously enough: spending so much time driving is not just hard on the torso (which I have managed with better success) but it’s hard on everywhere you bend, especially when your body sucks at bouncing back.

Short tendons in the front of the hip pull your lower back out of alignment, dragging on the front of the spine. This is terrible, as anybody who has ever had the least little bit of low-back trouble can tell you.

The way CRPS makes your tissues less resilient means that a few good stretches will not do what they used to do, back in my 20s and 30s, when 10 min. of dedicated work would put me right back in trim. Like most athletic young adults, I had no idea how good I had it… 🙂

Taking care of my hinges now has to be part of my daily routine. Especially since the driving isn’t over yet. Stretching five or six times a day, like I do my neck, which I’m still losing ground on; walking absolutely every day, or at least six days out of seven. At least it will buy me time, until I come up with something more definitive.

I fight hard to keep CRPS out of my legs in terms of circulation and sensation. Not interested in losing them to any kind of laziness!

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The sheer activity of Epsom salt baths

Taking a day to rest has been just the thing.Now here’s what I mean when I say, “I took an Epsom bath…” And I’m sorry to say that getting images loaded will have to wait for another day, so use your imaginations for now 🙂

Nearly all motels have a bathtub. I consider this essential. They’re small, but adequate. With a swipe of cleanser and a quick rinse, I’ve found all of them usable so far.

I should add that baths are not essential to Epsom treatment for CRPS. Here are a couple of tricks I’ve used, with a degree of success which not only included the targeted limb but also improved CRPS for me generally:

  • I’ve immersed my arms in an Epsom solution in a sink or basin. This is great when I’m not up to a bath, but I’m too chilly to sit around with wet limbs. I lean into the basin, with sleeves all the way up, and slosh and slosh and just soak it up. I’ve found that not only does it help my arms, but the relief goes up through my shoulders, down my back, and even my feet feel better after doing this with my arms for 15 minutes or so, 20 minutes if I can stand there that long.
  • When the dysautonomia is being REALLY bratty, I sit with a basin of Epsom solution and a tea towel nearby, and simply wipe the bothersome limb, stroking from healthy area to painful/spasming/misbehaving area, with the same mental chants I describe below…

Both of these strategies work extremely well. Many of us are accustomed to sink baths, and it’s no harder than that — easier, because rinsing is optional.

Temperature – the first consideration

People with chronic CRPS have two substantial issues that affect bath temperature: wonky signals to the circulatory system, and screwy temperature regulation.

Hot baths are a thing of the past. They aren’t good to me any more.

I like a bath that’s just a few degrees warmer than the temperature that feels like nothing on your skin. That seems to provide the best results.

I find chlorine to be counterproductive, so I let it go first. I run the tub a little hot, with the fan on, and leave the room for 5-10 minutes until most of the chlorine dissipates. (This really works.) Then I adjust the temperature.

MgSO4, my ally

I’ve gone up to using about 2 pounds of Epsom salt for one bath. That’s about a third of the 6 pound bag, costing between $3.50 and $6.50, depending on where you buy them. I used to use a cup or two, but I really get better results with a stronger solution.

The process

Remember, this is about re-regulating and re-normalizing, so leaping into the bath and getting busy is the wrong thing to do!

Going one step at a time and persuading my body to stabilize at each point is how the process works.

So I take a couple minutes to just sink into it, let the mottling pattern on my lower body and arms fade, and get some circulation going to my overworked skin.

I brush over all my limbs with my hands, introducing them to the idea of tactile input, and how that should go. This is an important first step, because the touch of a hand wet with Epsom solution is softer than silk, and it’s important to start with the most positive possible sensations. This helps de-alarm your central nervous system as well as re-acquaint your skin with the world. This is supposed to start, and end, as a definitely positive experience. In between, there might be some work.

When working on such deep and challenging health issues, it’s important to set yourself up for success whenever possible!

Back to our bath.

Nearly all motels have washcloths with a nice scrubby texture. The soft kind that you get in the bath and body store feels to me like turgid gelatin, soaking up a lot of soap and doing very little in the way of exfoliation – which is what I used to use washcloths for.

Now, it’s all about renormalization – or, to use the standard allopathic medical term, desensitization.

Leave it to medicine to make returning to normal sound like something bad!

I start with the soles of my feet. If yours are too sensitive to touch, start where you can touch. Remember, set your body up for success. This second pass distinguishes between contact on the surface and underneath, which are two different sensory realms. The first thing I do is go underneath, to the tissues below the surface of my feet, in a gentle and encouraging way.

I hold the washcloth in my open hand, using a big, squishing gesture.

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With that big gesture, and a certain amount of gentle elbow grease, I reassure the soles of my feet that they’re doing fine. Once they start sending appropriate signals of touch and motion, I work around the foot and up my ankles.

Using the washcloth in one hand, and nothing in the other, I alternate strokes, soothing the frazzled burning sensation left by the terrycloth with the silkiness of Epsom water in my palm. The frazzled sensation eases off gradually.

I don’t just notice what the sensations are from my skin, I tell that part of me what the sensations ought to be:
It’s just terrycloth. There’s no burning here. It’s just terrycloth. It should feel pleasantly scrubby, nothing more.

Every now and then, I move the washcloth to a part of my body that still thinks terrycloth is just terrycloth, and give myself a brief demonstration. That seems to help.

Once the signals start calming down a bit, I can go deeper. My calves take a little extra care. I start on the left, and it feels like a hunk of plastic. I tell it to calm down – in firm, maternal, authoritative tones – and go squish my right calf instead. When my right calf and shin are sending nice, normal signals of terrycloth texture in motion, I go back to my left calf, reassuring it that you can be normal, you know perfectly well what that feels like, there you go, you can do it.

Firm, yet loving, maternal tones are hard to resist. It’s a great re-progamming tool for bringing your brain closer to normal.

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Eventually, my left calf loses that awful dense feeling and starts to feel like a leg again.

The next step is to address the surface sensations on up the rest of me.

I coach my skin not to send sparkling messages of hot and cold where the washcloth goes, but just the sensation of terrycloth rubbing moderately over skin, and that that’s okay and the right thing to do.

I work my way up my legs, paying attention to the major nerve path and the major muscle groups (always with big, squishy gestures, not too challenging, but very tissue-mobilizing.)

I go back to my knees a couple of times, where the main effort is to mobilize the circulation and draw away the swelling.

I work on my low back and hips until the inclination to spasm turns off. I tell them to take it easy, just let go, you’ll know when it’s time to contract, now settle down.

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Then I lean forward to dip my arms and work on them, with somewhat gentler gestures. Since I can’t remember just what normal sensation is there, I look for overall warmth and better mobility in my forearms, with touch signals as close to normal as we can get.

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Part of the idea, obviously, is not only to re-normalize my skin as much as possible, but to improve surface circulation, so that as much magnesium as possible can be taken up by the troubled tissues.

Once I have squishy-massaged my arms from fingertips to collarbones, I do a quick scrubby pass on my back (where I used to get symptoms, and don’t want anymore)…

And then I get the Calgon experience, lying back in a warm bath, feeling alive and remarkably well, with nothing to do but enjoy myself until the water cools.

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Speaking to my brain in a way it can’t ignore

Health professionals dress it up in fancy words, but this is what brain plasticity boils down to: our brains take in messages that are so simple and so primal they slide in below the level of words. The way to push back against that plasticity and make it go the way you want, is to address your brain in ways that are simple, primal, and slide in below the level of words – even if you use words at the time. Even in spoken exchanges, remember, 90% of the communication is nonverbal. This is true when we talk to ourselves, as well as others.

With enough persistence, and a persuasive enough message, the brain can be re-reshaped.

Since so much of CRPS’s maintenance relates to the brain having been reshaped in a distorted way, part of the task is to reshape it into a healthier structure.

Dr. S. V. Ramachandran’s work on mirror therapy and lens therapy for people with amputations and other limb pain problems led the way in brain plasticity work, highlighting the very powerful (and nonverbal) effect of visual input on brain remapping.

There are several other ways to do this, including forms of brain retraining such as hypnosis, biofeedback, meditation, specific and clear visualization of painless movement (which, if done clearly enough, can cause brain activity nearly identical to the real thing) – and, naturally, using tones of parental imperative with your own sensations.

Speaking to my body in tones of loving maternal authority, I find, is remarkably persuasive.

Why I start deep and work my way out

I find that it’s often easier to start with deep tissues and then address the surface issues. It sounds weird, but it’s often easier for me to get past the surface sensations when I’m reaching into the muscle and fascial layers, and then, when the deeper tissues are responsive and the blood is flowing through them again, it’s a lot easier and more productive to work out the surface sensations.

Conversely, if I start with the surface sensations, I may not get far enough to be able to dig in to release and mobilize the deeper tissues. Getting halfway through surface pain leaves my body a lot more sensitive to intrusions than just charging in and starting with the deeper tissues.

On the other hand, there are times when the surface simply has to be dealt with, or there’s no chance of getting to the deeper tissues. My left calf was like that when I first wrote this, though it has improved a lot since then.

YMMV. Each of us is different. That is part of what makes CRPS so interesting, and at the same time so darn hard to treat.

Physical issues

In mobilizing tissue, the washcloth provides traction against my skin, so I hardly have to use any hand strength at all. This is important, because if I had to rely on my grip to get hold of the tissues, this would be totally out of the question.

The water neutralizes a lot of gravity, so it’s easier to control a limb you’re massaging. I can squish the muscles with either one hand or two, boof them against the bone, and jostle them around.

I can mobilize a lot of tissue with very little effort, if I use a washcloth in the bath.

I figure I should spend at least a solid 20 min. in the tub, to absorb as much as possible of the magnesium, the warmth, and the chance to melt all the little knots out of my brain. It’s not a bad prescription. Not bad at all. There is always considerable improvement, and sometimes it makes me feel almost completely well.

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Into hot water.. then cold water.. then hot..

This is a bit odd and I haven’t heard anyone else with CRPS trying it, so I’m just tossing it out to show how weird things can be…

I’m cold intolerant. Absolutely can’t handle it. My body locks up and the pain goes all-body and through the roof.

Can’t take too much heat either; makes me weak and foggy, and can trigger POTS symptoms (in my case, that’s mostly nausea, bloating, dizziness, weakness, lethargy.)

My body temp drops so much when I sleep that I’m cold to the touch. A housemate woke me once when she touched me affectionately as I slept, then found I was so cold that she shook me awake — she wanted to be sure I wasn’t dying. That’s how cold I was.

My first massage therapist, a good friend of mine, insisted I try the hot/cold plunges at Harbin Hot Springs, which happen to be 47 F and 118 F.


I told him that was completely insane and did I need to explain dysautonomia again?

He kept at it, and I finally went there for a few days. I was in bad shape, one of those times when I think I’m not going to live for long because there’s so much that’s so wrong and there’s so little energy left. So there wasn’t much to lose, as far as I was concerned…

At least it’s not an ugly place.

Took two and a half days to work up to it, starting with cool bath/dry sauna, working up to going between intermediate baths, dipping in the really hot for moments, splashing arms then trunk with cold. Eventually I could go for the full plunge. I did 2 full exchanges, and was all right. In fact, I was pretty good. Felt crisp, not chewed.

I went back later and did at least 5 or 6 more (I lost count, truthfully.) By then, I could FEEL my hands and feet as I couldn’t remember having felt them before: exactly where and what and how they were — which was, keenly alive.

I had no pain, no pain anywhere at all, everything was the right color — only a much better shade than I’d seen in years, and my head felt as sparkly as a diamond.

I don’t like to sound over the top, but it was such a feeling of absolute, perfect, poised and healthy ecstasy that words simply fail in the face of that experience.

Being totally pain-free makes us CRPSers high, but this was more than that. Everything worked, from the tiniest microvessel to the least drop of chemical messenger. My cells sang with the bouyant joy of it.

I copyrighted this image… kinda cool. Think I’ll use it as a logo.

I went out to the main pool, actually enjoying the cold roughness of the path on my unharmed feet, and drifted into the “quiet zone”, that is, the temperate pool. Although it’s not etiquette to contact strangers there, an awful lot of people turned to look at me and smile the sweetest smiles. I can only imagine how radiantly happy I looked. I felt that I was glowing brightly enough to light the whole space.

According to my online research, there aren’t many hot springs that have contrast baths at all, let alone to that extreme degree. If they do, they’re awfully coy about it…

I have hopes of a particular roadside hot spring at Yellowstone National Park that runs into a chilly stream. In winter, which it nearly is, that could be worth trying, though it would take a bit of effort.

I’m not sure how slippery it is, what the currents are like, or what sort of work is involved to get from hot to cold. I do have to be mindful of physical damage, until I can really find that cure I’m convinced is just around some corner on my winding path.

We shall see what comes up. I know this is something to add to the repertoire, one of the ingredients to combine into a cure, or something like it.

One more piece of the puzzle… a twitchy, morphing, complex, incredibly irritating puzzle, but one I’m rather stuck with until further notice.

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Remembering and re-membering

I’ve been doing intensive massage and craniosacral therapy for the past few weeks. I’m reminded, of course, that the neurological system extends throughout: bodies have memories. (There is some confusion about how those memories are stored. We’ll figure it out eventually.)

This, in turn, reminds me that the brain is malleable. CRPS changed it,

and if I’m thorough enough, persistent enough, and clever enough, I might be able to change it again.

Persuading the brain to remap itself is a remarkable process, because the brain uses the language of vision and metaphor and it responds most strongly to longing and fear. (This is one reason why mythology is so helpful, given the right story: myths tend to have powerful visual metaphors and visceral emotional force.)

The brain is also a monument to inertia: once it has started going down a certain path, it’s very hard indeed to persuade it to change course. I find I have to be firm, focused, and relentless, and since I also have CRPS-related ADD and periods of unbelievable vacuousness, that’s tricky… (I’m working on how to construct a webpage that has all my tricks and routines easily accessible, so I don’t have to remember what to do when my memory is at its worst. It’s a heck of a design problem.)

One good way to access the central nervous system (CNS) in a way that specifically rebalances some of the most critical areas of the autonomic nervous system (ANS) is through bodywork, like therapeutic massage and craniosacral therapy (these link to my providers — both warmly recommended.) Here are a few of the reasons why.

  • Humans, and other mammals, are hardwired to respond deeply to touch. The “safe touch” of good bodywork is profoundly soothing to the ANS, and since the ANS drives the multi-system dysregulation of chronic CRPS, this is a powerful thing.
  • The rocking motions of massage stimulate the parasympathetic nervous system, which has a lasting calming effect.
  • It releases endorphins, which reduces pain and brightens mood.
  • The tissue stimulation improves and stabilizes blood pressure and circulation, major factors with CRPS and dysautonomia.
  • Swelling goes down, as circulation is mobilized.
  • Hyperesthesia (pain to light touch) and allodynia (blunted sense of touch) improve because of something that clinicians call “desensitization”, a hostile sounding word which really means, “developing appropriate sensation.”
  • Hormones stabilize, perhaps due to the improved circulation and more stable ANS.
  • More stable hormones improve mood, reduce pain, and stabilize immune and inflammatory responses.

Therapeutic bodywork does all that. There is no pill or surgery in the world that can come close. Once I get my links sorted out, I’ll rewrite that for the medical blog. The value of good bodywork simply can’t be overstated.

A couple of weeks ago, during several treatments in a row, I had the curious sensation that my right arm and shoulder were being knitted back into my body. I hadn’t realized until then just how completely I had succeeded in shutting them out.

The still, quiet voice inside me indicated that dissociation should be intentional, purposeful, and temporary; if I wanted to be well, it could not be habitual. My inward guidance wasn’t telling me to stop dissociating (that is, mentally and emotionally separating myself from that part of my body), but to do so only when I needed to, to separate from too much pain.

Remaining dissociated is like disowning that part of my body, and I can’t persuade it to do anything when I’ve essentially cut it off. I need to persuade it to heal, and that’s a tall order.

During today’s craniosacral treatment (from the delightful and competent Sonja Sweeney), I remembered standing on the wall of my French-bed corner garden a few years ago, right before I fell off it and smashed my tailbone on the edge of a ramp. Pathetic lavender and dying weeds filled most of the bed, since I hadn’t gotten far with digging it up. Behind the glorious, fragrant, massive rosemary against the back edge, a 20-year-old growth of climbing roses spilled green and pink everywhere.

I had just completed a course of treatment that put my insides in the best shape they’d been in years. My stomach no longer bothered me, I was healthier and stronger, my stamina was better, and I was still inside the five-year mark with RSD.

What’s interesting is that, during this treatment, I was remembering the moment right before I got injured, not right after. My eyes were filled with roses and my nose with rosemary, and I was sketching out great plans for my bit of garden.

As I walked away after my treatment, that quiet inward voice said, “Remember pre-injury, not post injury. Remember that.”

It had to start with the rosy garden, because before the CRPS injury, I was working at Borland and was so involved with my work (which I loved) that I really had no idea how magnificently fit my body was, by the time I got injured. I simply didn’t notice it.

I enjoyed the activities of riding to work and running miles through the redwoods, but when I thought of my body, it was to criticize function, appearance, or both. (Except occasionally when I noticed those legs… :-))

In the rosy garden, I was aware of being better. And that was the point.

My brain needs something to reach for that has inward meaning and emotional oomph, so vague dissatisfaction is not a helpful point of reference. A sturdy inward “YES” is the goal: re-remembering this body, with all attached limbs fully integrated, blood coursing warmly throughout, everything moving and working, and that radiant feeling of blooming health and returning vigor.

I’m 46. I don’t expect feel the way I did when I was 34. But I know 60-year-olds who could kick the ass of me at 34. Being well is not an unreasonable idea, keeping in mind that I’m going forward, not back.

I’m inventing a frame of mind that doesn’t exist yet. Both remembering and re-membering give me important clues as to what it should be. I’m delighted to have figured that out.

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