Wednesday, December 16, 2009

RSDSA SURVEY: Veterans and Active Duty Military Personnel with CRPS

Most likely, if you have arrived here thanks to a search, you already know the ins-and-outs involved in talking about Complex Regional Pain Syndrome. You probably call this disorder RSD when you speak with certain people, and CRPS when you speak with others. If you are a brave soul, maybe you try to spit out "CRPS Types One and Two [Slash] RSD" before succumbing to respiratory distress.

The rest of you deserve an explanation -- and our encouragement!

I guess you could say that RSD is the common name used for the official designation of Complex Regional Pain Syndrome (CRPS). In 1993, the International Association for the Study of Pain designated CRPS as the correct term, and further divided it into two types, the division being based primarily on the presence or absence of nerve lesions (following the inciting injury or insult, whatever it may have been, *if* one is known).

Type I, formerly known as reflex sympathetic dystrophy (RSD), Sudeck's atrophy, reflex neurovascular dystrophy (RND) or algoneurodystrophy, does NOT have demonstrable nerve lesions.

Type II, formerly known as causalgia, IS the result of demonstrable nerve damage.

In all likelihood, these divisions will further evolve as research into the course and origins of CRPS progresses.

"Retired Educator, you are boring us to death..."

Yeah? Well, snap out of it. Though the symptoms are essentially the same, the etiology is not. More importantly, the name change is a step away from the increasingly disproved old theories of "it's all about an overactive sympathetic nervous system..."

In fact, I may puke on the next "expert" who trots out that tired old stuff, telling me that "RSD just means that someone flipped the 'ON' switch to the sympathetic nervous system and forget to switch it 'OFF' {chucklechuckle}."

I got yer sympathetic nervous system right here, Chuckles...

And on the level of the pragmatic, the name change has necessarily been embraced by the health care systems within the USA -- for instance, you do not apply for SSDI on the basis of RSD -- no, you must apply on the basis of CRPS, Type 1 or Type 2. There has to be a measure of standardization.


Some of us {sniffsniff} are so blessed that we can lay claim to both types!


Okay, so... I recommend that those who are newly diagnosed ask their health care provider if there is any significance to the Name Game inherent to CRPS/RSD. If the question is sloughed off, or if you are told that the difference is meaningless, you may want to further investigate that person's knowledge of the rapidly accruing new frameworks of the disease. True, it may change nothing of your actual experiences with the symptoms -- but down the line, you will want to be involved with a doctor capable of inferring new treatments.



One of the cruelest relationships involved with this disease is its predictable surge in times of war, when one can depend on plenty of traumatic injuries to limbs and brains... It is sad but true that many advances in the diagnosis and treatment of CRPS stem from the intensified research it undergoes when the guns and roadside bombs start going off.

And so, at last, we come to the rightful topic of this blog entry!


The following information and initiative comes from -- who else? -- Jim Broatch, Executive Director of RSDSA, Reflex Sympathetic Dystrophy Syndrome Association, and all around Good Egg.

Connecting to Veterans and Active Duty Military Personnel

Background
Complex regional pain syndrome (CRPS) was first described by Dr. Silas Weir Mitchell, a Union Army Surgeon, in 1864 after having witnessed the experience of injured soldiers in the Civil War. Unfortunately, we are finding more and more veterans returning from Iraq and Afghanistan who are suffering from CRPS or chronic pain.

Purpose
This September, the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) was invited to exhibit at the VA/DOD Evolving Paradigms II, a national conference for personnel and organizations involving in caring for returning veterans of the Iraq and Afghanistan wars. While exhibiting at the Conference, it became apparent that some of the VA staff were not familiar with the treatment of CRPS or its telltale signs.

After the DOD/VA Conference, RSDSA built a webpage with Resources for Veterans with CRPS, linked from our homepage. RSDSA is now reaching out to veterans and military personnel with CRPS, as well as their caregivers, to determine how RSDSA can increase its support to veterans.

Target Audience
Veterans and Active Duty Military Personnel with CRPS

TAKE THIS SURVEY

Definitions
•·Complex regional pain syndrome (CRPS) is a neurologic pain syndrome that can be characterized by severe, burning pain; changes in skin color or temperature; excessive sweating in an affected area of the body, or sweating for no reason at all; tissue swelling (edema) in the affected area; weakness or movement problems in the affected area; changes in hair growth or nail growth in the affected area
•·CRPS was previously referred to as either reflex sympathetic dystrophy (RSD) or causalgia.

Your contact information and answers will remain anonymous. Read RSDSA's Privacy Policy
here.

NOW, GO TAKE THIS DOGGONE SURVEY!


And the best of luck to each and every one of you.

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