Wednesday, October 23, 2013

"Systemic Complications of Complex Regional Pain Syndrome": What You Always Wanted to Know...

courtesy of YouTube channel TheDrexelInterview

Robert J. Schwartzman, M.D -- recently retired from his post as Chair of Neurology at Drexel -- published an article last July that will be a gift, I think, to most CRPS patients who deal primarily with an internist as their Primary Care Physician, or whose care is spread out among local specialists.

While I have known for several years that many physical and mental problems seemingly unrelated to CRPS, in its most restricted and precise understanding, were indeed related, I don't have the knowledge base to explain what I know intuitively.  I've known there was a link between CRPS and the way my adrenal insufficiency presents itself.  Indeed, and without hubris (over such as this?!), I think the fact that I "contracted" CRPS while literally in ICU with an Addisonian Crisis had a profound impact on the eventual severity of my disease -- and the almost complete failure of the HPA axis.  There have been recent really bizarre changes in my red blood cells that I could theorize were due to tissue hypoxia but could never find the words or bravery to vocalize.

Well, please, if you have CRPS and an understanding and willing PCP -- like my fabulous go-to-guy -- send them the link to this article, published in its entirety in the research library maintained by  Most of this stuff applies to those of us with longstanding CRPS -- you know, the sexy "intractable" sorts.  It goes a long way to explaining the systemic extensions of the syndrome's influence.

Circulating the article also quells an annoying tendency that I've begun to notice, which is the pronouncement by health care professionals who personify "idiots" -- in lieu of investigating systemic aberrations, related to CRPS or not, they wave their hands and say, "It's probably due to that CRPS thing." Yes, the law allows you to sucker punch these purported professionals and to not be charged with assault.

Really.  It does.

Unless you've decided to not overly investigate health changes that aren't life-threatening, a stance I adopted last December/January, it may be helpful to your overall health to understand the mechanisms of change at work in your body.  And then there is that possibility that all changes are not magically subsumed under the rubrique of CRPS!.  Me, I am getting a DNR tattoo, have the POLST paperwork being prepared, and no longer pray for any reason beyond the intercessionary.

Really.  But that's just my usual cheerful way!

So long as CRPS remains an orphan disease, the data that is collected will simply be part of an imaginary perverse Library of Babel à la Borges.  But perhaps there will be a systematized collection of chart data one day -- certainly, Dr. Schwartzman could not have written this article without such hard work going on in his environs, at least.  You could be a part of that important project and help change the rather grim trajectory of long-term CRPS that now exists.

Really.  It could happen.

Enough of my silly stuff, then.  What's important is that you get this article into the hands of any generalist who is treating your CRPS, as well as into the hands of anyone highly (overly?) specialized, as well, so that from their tree they may view your forest.

TITLE: Systemic Complications of Complex Regional Pain Syndrome 
AUTHOR:  Robert J. Schwartzman, M.D
Department of Neurology, Drexel University College of Medicine, Philadelphia, PA, USA
JOURNAL:  Neuroscience & Medicine, 2012,  doi:10.4236/nm.2012.
***** Published Online *** 2012 (

Available for .pdf download at  CLICK HERE

© 2013 L. Ryan

Changement de Sujet

Changement de Sujet (adult childish language alert)

© L. Ryan, All rights reserved


Elle m'emmerde.
Et toi, aussi, si tu continues à faire
et à commettre et -- Dieu, seul, sait
pourquoi -- à m'admettre
sans cesse, 
sans aucun remords,
petit sourire aux lèvres,
cet énorme tas de bêtises,
de  promesses rompues
ce grand panier de pommes
pourries, puantes que tu laisses
tomber au beau milieu 
du tapis -- (en plein cœur
de mon cœur) --
je serai obligée de changer le sujet.
C'est pas si loin, ce trajet d'elle à toi :
un clin d'oeil,
un bâillement
un de ces moments.
(Vas-y, si tu veux,
connard prétentieux
que tu es,
que tu étais,
que tu es devenu, 
moi, je reste ici --
où je suis
toujours restée -- 
tout à  fait
Malheureusement, on va être
obligé de te licencier,
de te laisser aller.
[au revoir! adieu!]
J'ai le droit de le dire, 
le droit de le sentir, 
le droit de te faire rappeler
qu'elle m'emmerde, 
et que toi? Tu es 
dans la queue,
le prochain, le suivant
dans cette crapuleuse 
file d'attente si bizarre, 
si immonde.
Fous le freaking camp, déjà!
Espèce de bizarrerie:
Une toute petite tranche 
d'une gouttelette de merde. 
"Toi, ma putain de salope,
tu me fais chier
avec tes trucs de merde!"
(Ça, c'est la répugnance
dite en français -- soigné --
chez les bien-elevés,
après le cabernet.)
"Hostie! Toi, mon tabarnac 
de ciboire de St. Sulpice,
tu me fais chier en christ!"
(Et ça, c'est la traduction
de mes sentiments
les meilleurs connus
et distingués, comme on les dirait
au Québec ou sur les pavés 
de Trois Rivières, familiers,
chez tout le monde,
en famille, quoi!)
"Toi, mon christ, t'es complètement fucked up!" 
(Et cela, enfin, c'est le cadeau,
la beauté des Acadiens qui disent
sans pensée antérieure
la vérité, hors toute conception
de classe --
parce que la vérité, c'est la vérité --
expérience bouleversante qu'elle est.)
Et bien, c'est fait,
c'est accompli,
mon changement de sujet.
Elle? C'était un inconvénient,
une mouche gênante;
mais, toi, ma foi que
tu m'emmerdes.

Author notes

The identities of "elle" and "tu" -- even the "moi," here -- are determined anew, day by day, which does not speak well of my maturity these days.  People, in general, are pissing me off, right and left.  Male, female, transgendered, even.  Plumbers, the tax man, lovers, friends, family, animals, contest runners, contest contestants, penis-brains, women who fall down screaming when running from ogres, poets, folklorists, anyone is fair game.  Remember, too, that French, as in most Romance languages, all nouns have gender.  So my inflamed and inflammatory "elle" might refer to the television or the toilet  as easily as Sarah Palin or Hillary Clinton.
My French, especially my cursing, is very rusty, so please feel free to openly and gleefully correct and instruct.

Tuesday, October 22, 2013

Brown Pride: Congratulations Cain Velasquez!

It's belated... a huge congratulations to Cain Velasquez for his dominating win over Junior dos Santos, a TKO in the fifth round.  That was the definitive rubber match, as evidenced by JDS' face afterward.

I am less of an MMA fan than in years past but my interest has been renewed by this year's TUF, in which the women are putting on a great show and taking many of the guys to school, in terms of aggressiveness, technique, endurance -- perhaps not so much in maturity, but you can't have everything.

Just to let Dana know a few things, as I have the man's ear, dontchaknow?

Please don't put Roy Nelson on the television again.  Until ____________________. You fill in the blank. Clue:  It is not "Until Roy can quiver for the entire 15 minutes."

Is Steve Mazzagatti still on the UFC payroll?

Could you add a "talking" penalty to anything having to do with Frank Mir?

As for Bellator's November match-up of Tito and Rampage? Puh-leeze.  It makes me sad.  It makes me cry. It does not inspire that warm pay-per-view feeling (but then, nothing does...).

To cheer myself up (and Bianca "The Octagon Nightingale" Castafiore), here's a visual of the heavyweight champ.  Ahhhh.

From KONews

Sunday, October 20, 2013

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,

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 

Neuro-Rehabilitation Centre Medical center:

Mats Andersson

Medicinsk chef, Neurologisk klinik

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

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...
Schestatsky, Pedro (MD)
Rua Ramiro Barcelos 2350 9th Flo
90035-000 Porto Alegre, Brazil
Show on map...
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):                                                                                                                    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