Friday, November 1, 2013

Happy First Day of RSD/CRPS Awareness Month!

I have gone back and forth about what I should write about today.  I written about my personal experience too often so what other way is a good kick off for the month?

Definitions!

Last year I was surprised when someone asked me what is the difference between acute pain and chronic pain?  I was even more surprised when they told me they thought it meant "acute refers to a small pain and chronic refers to more severe pain."  No.  These terms reference the longevity of the pain.  Acute pain is temporary pain like from a broken arm, twisted ankle, and some headaches.  Acute pain goes away when the problem area is healed.  Chronic pain is a pain that is intractable and lasts longer than 6 months.  These terms have nothing to do with the severity of pain.

Why do I reference the disorder as RSD/CRPS?  Well, 18 years ago when I was diagnosed the disease was still mostly refered to as RSD but the new name CRPS was slowing growing too.  It all depended on the doctors diagnosing you and which term they prefered.  Most people who have been diagnosed in the past five years are given the term CRPS.  I combine the two names because they are the same thing.  The name change happens because the medical community is still learning so much about this disorder.  Several years ago I did read an article that stated there could be a new name change coming but as a community we stood up and said please no!  It is hard enough to get the support and awareness we need when a name is not known but to keep changing it makes it darn near impossible.  After all RSD is not it's first given name.  Our disorder was discovered back in the Civil War and was named Causalgia.

So what do these initials stand for?  RSD is Reflex Sympathetic Dystrophy and CRPS is Complex Regional Pain Syndrome.  Now, what the heck to they mean?  RSD/CRPS is a disorder of the nervous system.

How does it work?  Usually the disorder begins after a trauma to your body.  This trauma can be anything from a simple sprained knee, a broken bone or surgery.  Occasionally you might not have noticed any transpiring event.  What then happens is that your original trauma heals like it is supposed to but you Sympathetic Nervous System is not misfiring signals to your brain and instead of your condition improving the pain is increasing.  Example; x-rays, cat scans, mri scans, blood work will all come back showing that your affected body part is negative to any problems.  The reason is that the disorder does not live within the affected body part, it is the nervous system that has gone haywire.  This is why so many patients with RSD/CRPS have at least one doctor look them in the eye and tell them "There is nothing wrong with you."  Unfortunately it can take months before a doctor who is familiar with RSD/CRPS recognizes the disorder and gets you started in a treatment program.  These months cost the patient a chance at remission.

In the years since I was diagnosed the medical community has made a lot of progress.  Back then you needed to drive to a major city to find a doctor who treated RSD/CRPS.  Today there are Pain Management Doctors everywhere.  More and more doctors know about RSD/CRPS and I have heard the stories of lucky people who were treated early and about a year later had full remission.  I have hope.  With more awareness we increase our chances.  That is why this month is so important!

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