Paul's CRPS Story
Reflex Sympathetic Dystrophy Syndrome
Complex Regional Pain Syndrome
Hello, I was on your website a few times and decided to share my story with you because it
may help someone to feel not so alone battling this disease.
In 2007, as part of a pre-requisite physical for a job in a medical setting, I had to take a full
physical, part of the physical was a Tetanus vaccine, my last one was in 1993-94.
Do to the supreme ineptitude of the nurse whom administered the shot incorrectly and in the
wrong part of my dominant arm, it wound up hitting my Axillary nerve and it's been chronic
chaos ever since with no real respite.
Unfortunately, it took my primary almost 2 & 1/2 yrs to properly diagnose me, which was
after seeing me for this injury 1x every 4 wks like clockwork for many yrs.
In between the firm but late diagnosis of CRPS, and the date of injury, between specialists,
IME'S, Columbia University and all the myriad of tests and testing, I was told I might have
Brachial Neuritis, Macrofagic Myofascitis...etc...nothing stuck.
Physical therapy made it worse. Aquatic therapy helps(expensive)because of the temp of the
water and the waters natural buoyancy. Group Hypnosis and integrative pain therapy is
helpful to an extent. Acupuncture did nothing for me after 7 wks. I'm looking at a
"scrambler" machine called "calmare" but still investigating that it's not an ultra expensive
T.E.N.S unit with no results, supposed to help with Allodynia and nerve shocks.
There is more, I have tried special mud treatments from holistic Doctors, no result, pain
To this day, and it looks like forever, I still have this awkward lemon sized
lesion/lump/swelling at the injection site. Of course you can barely touch it.
My 24 hrs are as follows, and this DOES NOT include "flaring extra", I get burning red skin
that's searing and like a flame from my elbow to my fingertips, then I get these electrocuting
jabbing nerve shocks from the injection site and they travel and everything lasts different
times as far as duration and intensity.
My Allodynia makes my skin super sensitive...etc, but when it flares she turns patchy red
like a lobster a little bit and the pain is 200% worse, and when my nerve shocks flare they
can last a long time and put me in a bed immediately from all the energy I lost fighting this
I have some, but not a lot of hair loss on the affected limb. Luckily, and god bless
whomever does, I do not have full body Allodynia, but in the Winter all bets are off and I
easily feel the Allodynia on my left foot and shin as well as my limb, minus the shocks on the
I have been offered ALL the dangerous and potentially harmful and addictive opiates/non
opiates to combat my pain, but I don't even let them write the script, I have a healthy phobia
on pills in this regard since I was a kid. I have also turned down the spinal chord wired box
I don't, thank the lord have a deformed limb or experience spastic twitching, what I do have
along with pathetic range of motion and little strength in my arm post injury, is a 24-7
experience of getting burning skin and being electrocuted along with flaring way too many
times combined with waning coping skills and suffering greatly in the winter double time.
Lots of doctors today are too free and easy and write scripts of medications to people if they
brake a fingernail, this disease RSD RSDS Causiglia Allodynia CRPS...XYZ...whatever, it's
been around a LONG time, I pray there's a safe cure, or at least a safer way to deal with it's
I am not an advocate in any way shape or form, however I have tried cannabis and I can
honestly report that it DOES help DULL DOWN my nerve shocks (except flaring), but
DOES NOT do a thing for my Allodynia.
I've been through the legal mumbo jumbo red tape and frankly it's boring but I needed to
protect myself, but in the end folks, people who have this condition like me and who DO
NOT participate in any harmful and or addictive pain meds, are NOT living a normal and
happy life. As you know this disease because it's chronic, can crack even the most strong
minded facade of stoic men and women due to it's persistent nature and attack.
I cannot begin to tell you that this pain can get so overwhelming that I find myself bawling
numerous times a day, as well as having to STOP all sorts of normal everyday things in
order to deal with a sudden flare or fire!...and it also affects the brain in many ways, as well
as your psyche and ability to live normally.
I have some good days, make no mistake I laugh and smile...etc, but until I can SHUT OFF
this pain I feel useless and weak and tired and frustrated and sometimes hopeless and a freak
and not whole and not evolving anymore and not part of anything and the STRESS that
chronic pain breeds is almost immeasurable.
Coping skills and structure is paramount, but chronic pain can and will knock any person
down a few pegs, but like a boxer, we need to get up off the canvas...not always the case
when your body and brain is exhausted from the the flurries of extraordinary pains.
God bless and I hope my story was beneficial in some way to someone.
©2012 Paul All rights reserved. firstname.lastname@example.org