For Nils Hulth

Nils, my email bounced back to me as you have apparently gone on medical leave.  I hope you see this and find it of some use.

On Wed, Oct 16, 2013 at 3:16 AM, Nils Hulth wrote:

If you would chose one treatment in the 3-6 month window (outside physical therapy) to fight for to get, which one would you chose?

I do not know if that question is possible to answer, but I thought I could just as well try.

Many, many thanks in advance,

Nils

Hi Nils,

I apologize for not answering immediately.

Please understand that I am a fellow CRPS/RSD patient and not a health care professional.  The very best thing you can do is to find a Swedish neurologist as well as a Pain Management Specialist experienced in treating CRPS.   I know that this is difficult, but I also know that there is more progress being made in Europe than in the United States.

Some possible sources for you to call, who, if they cannot help themselves, can probably tell you where to find what you need:

Frank J.P.M. Huygen MD PhD 

Professor in Anesthesiology 

Director Pain Treatment and Research Centre 

University Hospital Rotterdam 

The Netherlands 

PO Box 2040 3000CA Rotterdam 

Tel +31107034906 

Fax +31107035184 

f.huygen@erasmusmc.nl 

Neuro-Rehabilitation Centre Medical center:

Mats Andersson
Verksamhetschef

Hans Lindsten

Medicinsk chef, Neurologisk klinik

Per-Åke Ridderheim

Medicinsk chef, Neurokirurgisk klinik

************************************************************

You might also consider calling the European Federation of Neurological Societies to ask for a good recommendation.  Their contact information is:

European Federation of 

Neurological Societies

Head Office

Breite Gasse 4/7

1070 Vienna, Austria

Tel.: +43 1 889 05 03

Fax: +43 1 889 05 03 13

E-mail: headoffice@efns.org

They also have branch offices in Florence and Prague.  More specifically, here is some info on their committee that addresses "neuropathic pain":

EFNS Scientist Panel Neuropathic pain/ ENS Sub-Committee Pain

In light of the foundation of the European Academy of Neurology in June 2014, this EFNS Scientist Panel and ENS Sub-committee have already merged and are fulfilling their tasks together.

This panel/ sub-committee is dedicated to promote knowledge on the pathophysiology and treatment of neuropathic pain.

Attal, Nadine (MD)
Department of Pain Treatment
Hôpital Ambroise Paré
9 Avenue Charles de Gaulle
92100 Boulogne-Billancourt, France
Show on map...
nadine.attal@apr.aphp.fr

Schestatsky, Pedro (MD)
Rua Ramiro Barcelos 2350 9th Flo
90035-000 Porto Alegre, Brazil
Show on map...
pedro.schestatsky@gmail.com

As for my personal knowledge of how to treat CRPS at an early stage -- this is when "blocks" can help the patient overcome the pain enough to participate in INTENSIVE physical therapy programs, which have been known to be curative when embarked upon during this window of opportunity.  It means training yourself to work very hard while feeling a lot of pain, but it may very well save you from a lifetime of disability and suffering, so I'd say it is worth it!  It's important that your Physical Therapists be well-trained in CRPS, as some "usual" techniques are contraindicated. Yes, I know you requested "outside Physical Therapy," but at this stage, it truly is your best chance.  You must be in tremendous pain and the thought of pushing the limits of that pain can be terrifying -- that's why you need both the neurologist with experience and an anesthesiologist/pain specialist with experience to help you get through it, while starting on some pharmaceutical treatments, perhaps even ketamine infusions.                                                                                                                                                                                    Above all else!  I would give this reference to anyone treating you, and I would become familiar with it yourself, as I have found it to be the MOST HELPFUL INFORMATION out there!  These are the Clinical Treatment Guidelines written by two of the best CRPS doctors in the United States (Dr. Anthony Kirkpatrick, with assistance of Dr. Robert Schwartzman): http://www.rsdfoundation.org/en/en_clinical_practice_guidelines.html                                                                                                                    I apologize for the weird formatting, I don't know what my email is doing!  I WISH YOU MUCH SUCCESS AND IMPROVED HEALTH!  Until such time as you can get the best care, and make your choices on how to proceed, I CAN advise you to try to keep moving, in spite of the pain, and to try home efforts at "desensitization," such as putting your feet in buckets of rice grains (use your imagination!).  It's important to get your pain levels down to a point where you can manage to use your feet as much as possible -- and I do understand what strength of character and will is required to do that.  I believe in you, and I believe you can do it.  One word of caution: do not use ice on your feet, even though it may feel good, it can be harmful.  Please stay in touch and let me know if I can be of help -- Bianca/profderien                               

CRPS: Feet Update

It's many hours later. I am enjoying the season premier of Downton Abbey and was thrilled to discover that the DVR has also, apparently of its own volition, recorded a good many of the old Upstairs, Downstairs, and I guess these tidbits of confessional viewing habits tell you quite a bit!

Fred cannot abide looking at my hands.

He offers, freely, and with good intentions, to do anything for me -- I've but to ask. I've asked many times for help with my feet, until now the asking has degenerated into jokes (jokes unreceived, unnoticed but jokes, still -- usually something about a "spa").

They need tender, loving care, as the saying goes. Then reality sets in... you cannot touch the buggers without eliciting a scream or a melodramatic moan that attempts octaves. Even if I manage a good measure of pain control, and keep a hold on my emotions, as well, I cannot bring myself to ask for tender, loving care. It requires definition for Fred, detail, a play-by-play description of what and how and, even, why. It bleeds every bit of the tender, loving care from the process before it begins, so it never, ever... begins.

I want human touch, warmth, sweet-smelling waters, I want to see love of my feet shine in his eyes. Lotions of any sort just incite inflammation, burning, swelling, and the reddest red you've never seen. My feet will spend at least 12 hours emanating unbelievable amounts of heat just from the application of a simple cream. You can feel a force field, a threatening volcano, holding your hand a foot away. Do I exaggerate? No. The words get weird, the words get strange, the attempt to make someone understand ruins language, and makes me an object of ridicule. I've learned to shut up, to make my descriptions brief and ordinary. The weirdness of CRPS interests no one, not even the scientific types who ought to be interested in accuracy. I could tell a researcher that my pain level was an 8 or 9 out of 10, which would caused a brief raised eyebrow of disbelief or I could calmly explain:

What's the pain like? Like a thousand tiny paper cuts, never cleansed, reopening with every step. Like scrubbing the kitchen floor and ammonia spills onto an open wound. Like Fourth of July sparklers spitting through my foot and leg. Like a Kansas City hail storm raging through my foot. Like Dante's words in The Inferno when he wrote [my pain is] "….ever burning, but never consumed."

Not my words, obviously, being so circumspect and free of obscenity. It's a description I ran into while grazing around the RSDSA website, choosing to expose my cynical, nasty self to a section called "Stories of Hope." The quote is from one Kathleen Campbell, M. Div, in a fine piece called "Transformation and Hope—The Means to Recovery." It leaped off the page, buried as it was in cool, pastoral prose, and that levelheadedness one assigns to people who counsel others with all expectation of success. I routinely beg CRPSers not to talk about feeling doused with gasoline and set on fire... but not entirely for the reasons you probably assume! Mostly, it's because few of us have had the experience, though we all share dreams of self-immolation, flirting with a notion of martyrdom just to elevate this trashpile of an experience to something with a more ennobling history.

Thích Quảng Đức in the full photo of his self-immolation,
 in protest of South Vietnam's
Roman Catholic government's persecution of Buddhists, during which
he remained perfectly still.
It was a Pulitzer Prize-winning photograph by Malcolm Browne.

Over the ten years I've "had" CRPS, I've managed to hem in and refine my verbal descriptions of CRPS pain, except, as you, Dear Reader. can attest, for the pages of this blog.

"It's Hell," I say.

I don't suppose any of us really share a clear notion of what Hell is like, but I've noticed that following its mention, the eyes slightly lose focus, and there's often a flicker of fear.

And I've yet to be made fun of for saying it.

But I'd rather the medical types listen to the fine details:  though the right leg is more edematous, and the pain deep and throbbing, extending from inside the right prosthetic hip to the tips of the twinkling toes, and is covered with strange outbreaks, sometimes blisters -- it is the left leg and foot that cause me to issue regular invitations to Do-It-Yourself Amputations and Bar-B-Ques.  The left leg's pain is intolerable and usually the instrument of those God-damned spasms.

See?  It's best not to allow even the specialists to query one's pain.  The truth?  It's not that they cannot "handle the truth..." It's just that no one can sit quietly in the company of, in the contemplation of a personal Hell.

Still there?

If you are, don't blush or get over-emotional, but I love you.  (Fat chance that I'll admit it in the morning...)

If It's Sunday, It's Bad Videos!

I'm going out on a limb and declaring someone's search for "baclofen porn" to be the weirdest search of this blog to date.  Baclofen is a drug for spasticity.  Baclofen porn?  I cannot even imagine what that means, but I'd love to know.  So... whomever you are, s'plain yourself!

Late last night, I decided to reintroduce myself to some of the minor technology that has piled up in our well-appointed apartments here in the West Wing of Marlinspike Hall.  Won't bore you with long stories about Best Buy, UPS, Amazon... but will divulge that they did not come off as brilliant marketers over the holidays.

I had trouble sleeping so I loaded and tweaked and played with a new mp3 player that will hold more than the 6 songs my last one managed.  I did the tweaking and playing part of that in the soft swinging hammock of the velvety dark -- and was repeatedly attacked by one Buddy, the outrageously large kitten, our Maine Coon.  He's undergoing yet another growth spurt and that means, too, a certain recidivism in his behaviors, mostly chewing -- wires, anything plastic, doors, canes, wheelchair wheels.  I got him settled down, eventually, by doing what he cannot resist -- toy with his elastic ears.  Pulling them, scratching them, praising their magnificence.  I set the player to a 60-minute sleep mode, blew all the tension out of my body via my mouth, and let my mind go with the music.

The little faker.  Five minutes into my relaxation, KABOOM.  Imagine Buddy landing on your chest, claws clawing, vocalizing like a feline maniac, going after those noisy little wires, yanking the earbuds from your aural cavity with fierce violence.

He's fascinated with music.  Or noise.  Fred bought an old spinet piano several weeks ago, and Buddy lurks as Fred pecks at the newly tuned keys, looking over his shoulder, trying to find a way inside (what is a piano, after all, but a big box?).  He walks on the keys, jumping straight in the air sometimes at the sound he himself produced.

Yeah, so another piece of electronics that mocks me is the video camera,  I loved my little Flip thingy, but I also dropped it into a sink full of hot soapy water.  The new one, refurbished, is a mainstream model, meaning:  it's not for me!  I can't get my hands to find one ergonomic boon in the design of the thing.

So, of course, we decide we're gonna make a movie of Buddy and the Piano.  I dug through piles of buzzing, whirring electronic gadgets, found the camcorder, and did a test shot of the Maine Coon flexing his paws and claws in preparation for a Beethoven piece he's been practicing.




Then, of course, as we proceeded in solemn cortège to the funky spinet piano (for which Fred has yet to purchase a bench), and Fred began a rousing version of Oh My Darling Clementine while the cat lolled on the cat tree just behind Fred's right shoulder.  Buddy mostly stared (glumly, very glumly) at me and the stupid camera.

The stupid camera's battery died.

Okay, fine.  So this morning, after the Night of MP3 Battles, I figured I would get the now properly charged camera out for some practice.  It requires too much of my hands but practice can occasionally improve performance, I hear.

But I only produced nonsense.  So, of course, I am posting it, with these caveats:
1.  I know my house is a mess, so hush;
2.  No, I do not abuse Miss Marmy Fluffybutt, I don't care what she tells the SPCA;
3.  I know my filming skills suck, thankyouverymuch (see aphorism about "practice" above)
4.  Fred was worshiping with the Militant Lesbian Existential Feminists;
5.  Yes, I know my feet and hands don't "look right." I have CRPS, you ninny;
6.  I'm really sorry for posting junk... but I am bored and the only other things to do right now are dishes, laundry, and vacuuming;
7.  Ignore the raspy voiced narrator, she is an idiot.

Oh, and I promise not to encourage Buddy in his interest in the microwave.






okay, so this video is even worse than i imagined... also, i forgot that youtube won't accept (from me, at present) vids longer than 10 minutes.  so you missed the update of my feet.  have no fear, we'll capture some beauty shots of those things at the end of my legs.

my feet my feet oh my feet my feet: video as dirge

i am having a high pain day in my legs and hands. 

captain haddock got fred one of those flip cameras as a winter solstice "longest night" token, though we usually just say it was a "christmas gift."  you know, to avoid perplexity.  and stuff.

anyway, i hurt.  a lot.  and i have been losing my temper a bit because of it.  i am sorry, but no matter how sorry i am, i keep blowing up.  there is no one who really constitutes the object of my anger;  they are just there. 

that they're there by choice is what is truly mind-boggling.

and oh-so-appreciated.

so i was reading an email from a friend who was bitching about how her feet throb at the end of the day and i about puked.  what she knows about throbbing would fit into the disintegrating window of what used to be my big right toenail.

er, my right big toenail?  (somehow, that makes my toenail sound like landed british gentry)

so i made my first film.

of my feet.

also... i forgot that my hands are now showing their temperature and pain gradations by means of color, too.  it is kind of freaky looking, the split on my left hand.  on my right hand, busy holding the camera and trying not to shake, the purple "line" extends almost all the way up my forearm, but on a diagonal.

to be precise, and why not? -- there is a line on the right hand that matches, exactly, the placement of the line on the left hand.  this is typical of me, and, i assume, of bilateral crps/rsd (the disease process in question, plus a scosh of avascular necrosis, for good measure).  but because the damage is more extensive on the right, the area past that line is just a step-down from the first splotch of purple.  that second area extends up the forearm, on a diagonal.

to be precise.

my legs are on fire.  that would be the famous "burning" neuropathic pain.
they also throb, deeply -- i assume from the bone and tissue damage.  and oh, is the bone damaged.
there is a superficial annoying pain that stems just from contact with... air.  and -- almost, as you will see, one cat.  that was dobby.

he knows better than to sniff my feet.  that was enough to send me into orbit.

maybe i will set up a "footcam."

anyway, here's my first flip vid: