The Spinning Backfist or Romancing the Pain

I said to myself, "Retired Educator, this is another fine pickle you've gotten us into!"

Unfortunately, La Belle Bianca Castafiore overheard. She was hovering, distraught -- as is her frilly wont. She kept reaching out to hold my right hand -- O! O! Ta pauuuu-vre mainnnn!

In prompt reply, I kept hitting her with a left spinning backfist, much as Shonie Carter used to take out Matt Serra in UFC 31.

Shonie rendered Matt unconscious at 4:51 in the third round of a three 5-minute rounds match. Serra dominated -- shooting, sweeping, pulling guard, attempting submission after submission, always the aggressor -- until those last 9 seconds that he spent unconscious on the floor of the octagon.

I feel close to Matt Serra, victim of what looked to be a desperate measure, if not a complete fluke. (Though farbeit from me to suggest that Shonie won by any means other than the execution of finely honed skills.) La Belle Bianca, meanwhile, struggles to climb back up to the bar stool she inadvertently left behind when my fist glanced across her ample squared chin.

Yes, indeed, that fight feels awfully emblematic to me right now. Oh, don't worry. La Belle Bianca can take a hit. She's got a great chin. A Leno chin and lots of heart. Coming round, she's always mumbling about being so belle in that damned miroir, and then she laughs when she realizes that she is just fine, is right at home, in fact, unconscious on her own doggone kitchen floor! Elle murmure toujours, first thing on cracking open an eyelid: "ah je ris... de me voir... si belle... dans ce miroir... Mwa haha ha!"

She knows better than to touch me at anytime without permission, and I would have thought the current outward appearance of the hand discouraging to anyone who loved to touch. It's just that, from time to time, La Belle B needs a refresher course on the range of responses with which *this* particular person with CRPS/RSD might respond.

La Belle B., herself, regaled me with stories of my pure aggression in late 2006 -- in the course of about 3 months, I ended up in ICU on a ventilator 3 times. Apparently, I am prone to violent leg kicks if unexpectedly touched, even when unconscious -- that was my only recourse for expression, my wrists being in restraints.

I kicked a pulmonologist twice smack dab in the stomach. (And that sort of begs the question: Why was the pulmonologist touching my legs to begin with?)

Yesterday, I went back to the outpatient radiology department for a triphasic bone scan. The previous visit had been something of a disaster and I was ready for this one to be the same. When I blogged about it, asking for suggestions as to how better handle the combustible reaction that comes when my acronyms meet medical airheads, the only person to respond was Nurse Buttercup.

Nurse Buttercup wrote: Jeez,I'm so sorry you're in such pain.I'm pretty sure most medical professionals aren't familiar with CRPS or RSD. Maybe state your response to being grabbed or touched in a way they can easily understand by telling them to treat you as if your limbs have been burned,that touch hurts exquisitely. Most people have no idea about this pain syndrome because it is a fairly new phenomena.Maybe you can call the Radiology Office to talk to the nurse in charge.Ask if they are experienced in dealing with patients with this diagnosis(It doesn't sound like they are) and maybe you can educate them on it.That's not something that you should have to do but it might help.

That was a great suggestion and I took it to heart. On every piece of paper proffered me, I carefully wrote:

I have CRPS in both my arms and my legs. Because it hurts to be touched, I would appreciate it if you would ask my permission first. I can transfer from chair to most anywhere without assistance. Thank you.

When the Adonis of a Nuclear Radiology Tech took over, I asked for his attention (I have *never* done that before!). He dropped what he was doing, turned and listened. "Hmmm," I thought to myself, "that Nurse Buttercup is one smart cookie." I did my one hundred words on The Acronyms, including Buttercup's suggestion about making the description of the pain analagous to something that anyone could access in their own history of experiences.

Many folks exagerate their pain and I am not exactly sure why. If you have CRPS/RSD, and you are conversing pleasantly with a medical professional who actually knows what the acronyms mean, then you are, at the very least, recognized as having a pain syndrome.

Hopefully, I see a doctor who understands CRPS/RSD, knows that it is -- in my case -- no longer a "peripheral nerve" disease, no longer sympathetically maintained pain (SMP), and complicated by extensive pre-existing avascular necrosis. I used to try and explain that I had causalgia, or CRPS Type 2, in 3 limbs, and RSD, or CRPS Type 1, in my left leg only, and that as of January, it seems to have "spread" to my lower face... but realized, finally, that it did not matter, and that I was rapidly becoming one of those patients.

So now I usually say some version of this:
I have a central nervous system disorder called CRPS. It's primary symptoms are severe pain and sensitivity. The pain is a combination of burning, deep aching, pins-and-needles, and sharp electrical surges. You can see by looking at my feet and right hand that there are also severe changes to skin, bone, and hair. I have an extreme sensitivity to touch, sometimes to what must seem an impossible degree -- such as the movement of air near the skin. Please let me know how you want me to be positioned, and I will do everything I can alone. Better that I should cause myself pain than be mad at someone else! [insert hearty laugh] If you need i.v. access, please stay within the nerve distribution areas I point out, and if possible, use pediatric needles. I really appreciate what you do and thank you for listening... [simper simper]


An ER doc in Texas writes a terrific blog called Scalpel or Sword. Like most of the medical bloggers that I have been reading, he has come to regard many claims of pain with a jaundiced eye. The general rationale given by the medical professionals for their attitude is based upon the abuse of their compassion by the many-rused drug-seekers who people Emergency Rooms looking to score some narcotics. To that end, I never ask for, or even accept, offers of pain medication in the ER. (And believe me, that resolve has only grown since reading these médico-

bloggeurs.) Anyway, as part of the dialogue, or the ventilation system for the release of excess gas, Scalpel or Sword took on the Fearless Analogy Aspect of chronic pain patients, in this short piece:

Chronic Pain vs. Childbirth
I've written quite a bit about pain on this
blog, and I always enjoy the comments and personal anecdotes of my contributors,
but I have noticed an occasional comparison that strikes me as a bit of a
stretch.When a chronic pain patient really wants to impress me with her
supernatural pain tolerance, she will occasionally state that her natural
childbirth (for some reason these women always have their babies naturally) was
nothing in comparison to the pain of her ______ (insert chronic pain syndrome of
choice here). [....]

Not having any peerage in the subset of natural-childbirthers, I react where I can. Quite often, I have to duck and run for the nearest exit when I encounter a person with CRPS who manages to bring up the McGill pain scale within the first minute of our conversation. I never knew that the goal was to have a disease "ranked as the most painful form of Chronic Pain that exists today."

Keith Orsini is the founder of RSDHope.org, an incredibly useful site for CRPS advocacy and education. As part of the many pages of information available there, Keith attempts to answer the thorny question: "What does CRPS (RSD) feel like?" Here follows his considered response:

I was asked recently at my Doctors office by a visiting intern, "What does
CRPS (RSD) feel like?"
This is a question I get asked quite often by the
media as well. They want to know what the typical CRPS patient feels when they
experience this pain. Every patient is asked this question now and again and you
have to think of your answer by the way the person asked. How interested are
they in your answer and how detailed an answer are they looking for?

If they are asking what is CRPS pain is like in comparison to other
diseases you give the McGILL Pain Index answer, "CRPS pain is ranked as the most
painful form of chronic pain that exists today and is ranked on the McGILL Pain
Index at a whopping 42!".

SEE MCGILL
PAIN INDEX

If they are asking as a friend and you don't want to scare them away
you simply say "It is the most pain I have ever experienced, it hurts
constantly." After all, many patients have already lost a great may friends
because of the disease and they don't want to lose more.

If they are a loved one you try and protect them. You don't want them
to know how bad it is. You don't ever want them to truly understand how much you
suffer because you know how much they would then suffer as well. Many times your
answer is simply, "I am fine. It is nothing I can't handle." Once in a great
while you may let them know how truly horrible it is, after all, they see it in
your eyes. But most of the time you try and shield them from the depth of your
pain.

If you haveonly had it for a year or two you aren't as skilled at
hiding your pain, or controlling it, as someone who has had it for ten or more.
I think long-term chronic pain patients get so good at masking their pain, our
pain, that when we have to reveal it, when we come upon circumstances where
medical professionals need to see the actual level of pain we are in, it is
difficult for us to convey the depth of the pain, to truly let down our guard,
those walls we have built up, for fear of not being able to put them back up
again.

So, having said that, what does CRPS pain actually feel like?

Let me share with you what I shared with my Doctor recently and maybe
it will help you understand our pain a little better.

RSD pain can be anywhere in the body where there are nerves. Most
commonly in the four extremities but some people have it in other areas such as
eyes, ears, back, face, etc.

What does it feel like? Well, if you had it in your hand, imagine your
hand was doused in gasoline, lit on fire, and then kept that way 24 hours a day,
7 days a week, and you knew it was never going to be put out. Now imagine it
both hands, arms, legs, feet; well, you get the picture. I sometimes sit there
and am amazed that no one else can see the flames shooting off of my body.

The second component to RSD is what is called Allodynia.

Allodynia is an extreme sensitivity to touch, sound, and/or vibration.
Imagine that same hand now has the skin all burned off and is completely raw.
Next, rub some salt on top of it and then rub some sandpaper on top of that!
THAT is allodynia!

Picture getting pretty vivid?

Now, because of the allodynia, any normal touch will cause pain; your
clothing, the gentle touch of a loved one, a sheet, rain, shower, razor,
hairbrush, shoe, someone brushing by you in a crowded hallway, etc. In addition,
sounds, especially loud or deep sounds and vibrations, will also cause pain; a
school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic,
kids screaming, loud wind, even the sound in a typical movie theatre. This is
what allodynia is all about.

Imagine going through your daily life where everything that you touch,
or that touches you, where most every noise around you from a passing car or
plane to children playing, causes you pain. In addition to the enormous pain you
are already experiencing from the RSD itself. Imagine living with that pain and
allodynia 24 hours a day, every day, for months, years, and longer.

There are many other symptoms which you can read about in our RSD SYMPTOMS section
but these are the two main ones that most patients talk about the most.

I hope this helps you understand what we deal with every day.

Peace, Keith Orsini

I have witnessed conversations between "newbies" and the elder statesmen of CRPS support groups where the McGill pain scale is whipped out before the initial greetings are even complete. And I have had to turn away from such people and structures when people with CRPS would fairly crow with pride that their pain superceded the pain of cancer patients, even! It can make your blood run cold, this need for justification and amplification of pain. Having watched a dear friend fight breast cancer and then lose the battle against the resultant bone cancer, such jockeying for position makes me fairly misanthropic.

I hurt more than the naturally birthing mother!

I hurt more than the terminally ill cancer patient!

Whoo Hoo!

This is what I understand: It is difficult to live with a disease that could easily have been cured if it had been properly diagnosed and treated within 3-9 months of onset, when a good part of the time the patient is treated dismissively and perhaps even as the worst example of somatization or malingering. It is very tough to be sent to the psychiatrist in lieu of the more correct EMG testing lab. If CRPS has a tenacious hold on you, and your window of opportunity for treatment has closed due to your doctor's ineptitude, you've then earned the right to spiral into a deep depression -- so either way, it's back to the shrink for you, bay-bee.

And somehow some people add a pathology to their lot -- they own their pain, they cherish their pain, they sing with Melissa Etheridge: Precious P-a-a-a-i-n! They may be the only CRPS patients an Emergency Department doctor or nurse ever meet: The Romancers of the Pain.

I sometimes wonder if they will know what to do when relief comes, if a remission comes. Will they be able to live pain free?

As an Excellent Educator, I know that the power for communicating an urgent need or agenda never comes from the loud brassy side of things. No, when it counts, the verbal transaction emerges from focused control, almost a whisper, of the salient laser points.

There are times, though, when I do want to yell, fuss, and scream -- times when somehow, it actually does seem like my intrinsic worth as a human being hinges upon another person, educated in another field, and who clearly doesn't understand or have a clue. This happens less and less, so there may be an association with either maturity or I-could-give-a-rat's-ass-edness.

I am potentially facing the removal of my right shoulder prosthesis due to osteomyelitis. That in itself is mind boggling -- how *do* you live without a shoulder? And -- I refer you again to the photo of my right hand above -- would the universe mind very much if I go temporarily insane at the thought of what the CRPS-Borg will do to that appendage? Madre de Dios.

All of the emotion in the paragraph above, all of the fatigue (I have not slept in fits longer than 45 minutes since mid-June), the generalized angst-pain of it? Were I to be seek care at an ED or even at my good Dr. Go-T0-Guy's office, that would all have to be... stuffed. It is non-sensical. It is female! You would be hard pressed to convince me that much of the animus spilling over in the medical blogs does not have a basis in misogyny. Ah, but I would stuff even that subversive understanding, pretend a large measure of ignorance -- whatever it takes to assuage and placate the equally tired and frustrated "care givers." The Excellent Educator knows when to have La Belle Bianca escorted off campus grounds by security.

So back I went this past week for a triphasic bone scan, back to the radiology department that did the failed aspiration under fluoroscopy, but that managed to successfully send my pain into orbit. This is how I wrote it up elsewhere (I am overcome with all this typing, even though I think it is good PT for the hands):

They need an i.v. for the test. I make a sober speech to the tech,
explaining how and where he can touch me, where he can stick. He's a good boy
but he can't handle a "tough stick" and calls for the hospital i.v. team after
only one try. No answer for over an hour. I was supposed to be injected, take
some phase one shots, then come back after three hours. We planned to eat lunch
downtown.

So... he tried once and quit. The i.v. team got it in on their
third try. And immediately, the CRPS/RSD in that left hand went crazy. I had a
little unaffected area -- now I don't. I pray that it will calm down and fight
off another exacerbation.

I was not prepared for what happened next. As the needle finally
threaded successfully into the left hand, my right hand began to swell, turn
purple/red, throb, and burn.

I think the only reason I was able to maintain my composure was that the
good people had done *everything* I asked them to -- they used pediatric
needles. They stayed in the area I mapped out (following the radius and ulnar
nerve distribution). *Still* it kicked the CRPS into high gear.
bleepity-bleep-bleep!

*This* is the kind of problem I would love to call a doctor about! Help
me stop this thing! But I know they don't know... so I josh and joke and
take some ibuprofen, and some baclofen for the twitches setting in in the
legs. I sublimate.

The i.v. nurse actually knew what CRPS/RSD was!
She was very sweet. She was hanging back when she was done, making sure they
babied that needle, and she wanted to know: "How do you stand the pain?" I
almost burst into tears! It is so unexpected to have pain acknowledged
like that (you know, out in public and all, when you've got your OutsideFace on)
-- she caught me unaware.



I don't know how it happened, but we were laughing and cracking up over the weird things we do to distract ourselvesfrom pain -- and I gave my first ever public performance of wheelchair Tai Chi! I love Tai Chi and hated when I had to stop... It is a MARVELOUS thing (habit? exercise? pain reducer? life extender? meditation?). She was following along and we had half the staff in nuclear medicine in the Opening Posture of Taijiquan. Of course, it got kind of ludicrous when i couldn't *raise* my arms. I have dreams of doing the 24 movements. I dream of Wild Horse Shakes Its Mane even more often than a blistering crosscourt return in tennis.