Reflex Sympathetic Dystrophy Syndrome (RSDS)/ Chrnic Regional Pain Syndrome (CRPS)

02 July 2012

As of late I have been asked quite frequently about my mom's disorder.
After explaining it multiple times, I figured that it might be beneficial to just make a quick post about it.

So I am going to try to make this a fairly short post, but I will also be trying to cover the main points that should be known about RSDS/CRPS.

My mom was diagnosed 5 years ago (this September) with Reflex Sympathetic Dystrophy Syndrome (RSDS) or Chronic/Complex Regional Pain Syndrome (CRPS).
This is a disease of the Sympathetic Nervous System (SNS).
It basically means that the SNS is not working properly. Nerves are misfiring, so they are constantly sending pain signals to the brain.
This disease can be caused by a traumatic injury or just a bump on a table.
The disease does not appear to be linked to the severity/magnitude of the injury.
There is no exact cause that has been noted.
There are many symptoms that accompany the disease, some of which are:
-Severe burning pain
(My mom refers to it as burning pain and pins & needles pain, but like 10 times worse than what we would experience normally. But it is constant and never ending.)
-Extreme sensitivity to touch, light, water, hot/cold, etc.
-Tissue swelling
-Frequent changes in skin color and temperature
-Contracture (limited limb movement due to tightening of the muscles and tendons)
-Muscular Atrophy
There are many other symptoms of the disease but it can get to be a long list that few people actually want to read.
There are two types of CRPS.
Type 1 is due to injuries that have no direct link to any nerve damage.
Type 2 is due to injuries that caused direct nerve damage.
There are treatments available, although most of them are focused on pain management since there is not cure for the disease at the present moment.
Pain medication and antidepressants are some of the most common treatments.
Nerve Blocks, Intrathecal Drug Pumps, Spinal Cord Stimulation, and physical/occupational therapy are other treatment options used frequently.
Surgical Sympathectomy can be used, but it is not guaranteed and it could cause the disease to worsen in the limb and/or spread to other areas of the body.

This disease is 2-3 times more likely for females than males and it affects 200,00 to 1.2million Americans.

My mom got this disease as the result of a cat bite she got at work.
Yes, you read that right. 
A cat bite.
At the time she was working at an Assisted Living Facility back home and they have two cats that they keep for the residents.
My mom was working nights and one night she was cleaning the lobby.
One of the cats came up behind her and laid down.
Not realizing that the cat was behind her, she stood up and stepped backwards.
She stepped on the cat who in turn bit the back of her left ankle.
This was completely in defense and my mom thought nothing of it, especially since she grew up around cats and had been bitten many of times before.
However, by the time she got of work at 6am she could not walk on her left foot at all.
She went to the ER and they just gave her pain medication and crutches.
The ER doctors did not know what was going on.
Within about a week or two her left foot started to turn inwards.
Seeing as this is not normal, she went into the doctor and they gave her this boot thing to wear to try and keep the foot straight.
This was worn for a while, but it eventually got to the point that she couldn't stand to wear it any longer.
My mom was in severe pain and the sensitivity to just about everything was crazy. 
She went to several doctors and it took a while before any of them made the connection to RSDS.
In September 2007 my mom was put in a wheelchair.
She has been in the wheelchair ever since and she will never walk again unless a major miracle happens.

The first couple years were kind of crazy due to the fact that we did not know much about the disease and she did not know how to handle the nonstop pain that accompanies the disease.
It was a very stressful couple of years with everything that was going on.
At 14 I was thrown into the position of being an adult and it was a hard adjustment.
Not to mention an extremely fast one.
I watched my mom go through a lot and got used to knowing which medication she needed when and what days she went to which doctors or therapy sessions.
It became pretty much the central focus of life.

I watched as my mom came extremely close to dying several times as a result of different treatments that were being tried.
I remember the 2am ER trips via ambulance because the disease was acting up.
I remember the port being put in so she could get medicine more easily injected when she went to the hospital. The numerous days that she was in pain because of it.
I remember the port being taken out and the week or so of pain that came from that.
I remember so many of these things.

I wish I could go on and in more detail, but I do mot want to bore anyone.
I am more than willing to share more if you contact me.
I will probably share more in the future without a doubt since it is a major part of my life.
But I am going to leave it at this for tonight.
Like I said, if you want to feel free to contact with me questions.
I will willingly answer them if I know or do my best to get an answer for you.

God has brought my mom, my sisters, and I through this for almost 5yrs now.
I have no doubt that He will continue to lead us and provide for us in the coming years.
We only go this far because of Him.
God is good!!

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