RSDS/CRPS - A Disease that needs more AWARENESS!

RSDS (Reflex Sympathetic Dystrophy Syndrome was the original name for this disease)
CRPS (Complex Regional Pain Syndrome is the name that has been attached to the disease in recent years)

I have found this disease is a very difficult disease to experience, seek treated and create AWARENESS OF.  

I will share just a short version as to what RSDS/CRPS is.  Should there be anyone interested in learning more about this disease, please leave a comment.  There are professional means to begin a support group.

I was diagnosed many years ago now in Houston, TX with this disease.   It will live within me, in some fashion, the rest of my life.  It is a disease that there is no cure for, as of today.  It can go into remission with the proper medications and therapy; when the disease is diagnosed, early on, after onset.   Preferably, within three to six months.  
However, mine was not diagnosed for over one year.  Therefore, I was in a treatment program for 18 months in order to function.  Since it took so long for my diagnosis; I do have some limb damage that gives me issues from time to time.  The important thing to remember is: I can walk without aid and I can function independently.  I am a happy person and I do not experience the Burning Pain all of the time.  My RSDS/CRPS is in remission at the present time.   One never knows when it will rear it's ugly head, so to speak.  

The 'MAJOR SYMPTOM' of what RSDS/CRPS is: IS A BURNING PAIN.  It effects the central nervous system.  It is vital to continue the circulation of blood flow to the extremities. When the blood flow isn't flowing evenly over time, the extremity will begin to atrophy (waste away).  It is vital for the core/center nervous system to work properly for all parts of the body to work accordingly.  RSDS/CRPS is a condition that interrupts this process.  An example would be the thought of an electrical process when lightening strikes and the electrical system that is designed to work evenly and accordance with the wiring in line.  And, when it is interrupted through another means that isn't invited or belongs in that area, it misfires. The exact same reasoning can be applied as to what is happening in a human body when an injury, an illness and/or trauma of any kind enters the body that isn't welcomed or it is not being treated properly.  Over time, usually, a three to six month period, RSDS/CRPS begins to take over with Burning Pain.  It is vital for treatment of medications and therapy to keep things moving and active for recovery to begin.  

The Number One Question seems to be: 'How does somebody get this disease?' It is created through 'trauma' of some kind.  It can be from a surgery that went badly, it can be from a construction worker hitting his leg the wrong way in his work, it can be as simply as a little boy running into first base and hitting his elbow/knee the wrong way.  It is the 'firing of nerves' that creates 'trauma' in the human body.  This 'trauma' is not treated and/or it lingers in the body in a mis-firing way.  Possibly unknown to the person at the time.  However, when it lingers for a period of time and does not get better; symptoms will creep out in different ways.  A Burning Pain might occur and/or a limb might show redness, the skin might be shiny and tight and/or the limb might turn cold and purple at times.  All, symptoms of improper blood flow.  

It depends on how long it takes for this treatment to be acquired as to the damage it leaves behind.  Again, comparing RSDS/CRPS to the illustration of the electrical process.  Depending on how much lightening damage has occurred, will depend on how much maintenance can be done to make the electrical pole whole.  

This is a very brief explanation as to what RSDS/CRPS is.  This no way completes all that should and can be shared about what RSDS/CRPS.   

However, should anybody be interested in learning more and/or have a desire to be a part of forming a support group in the Evansville Tri-State; I would encourage you to comment on my blog.  
Perhaps, if there is just one that can be added to another person; an AWARENESS can be brought to RSDS/CRPS to help others.

Thank you for caring.

Until next time
God Bless
Doris

Sunday evening

Hi Friends,

I am sharing with anybody that wants to read my posts.  Some of the things that I write is positive and some is just reality that I feel is important to reflect on and learn how to cope and accept in our life and living.

I am sure we all have heard the statement: It doesn't take long to look around us and see somebody worse off than we are.  Have you ever heard this? I have and I have felt this.

I am grateful for what RSD has taught/is teaching me.  I feel that I have learned volumes about life and living and if RSD had not crossed my path, I wouldn't be the person that I am today.
I can honestly say that I enjoy my life and living and from hence I have come.  Pain, sorrow, lessons, setbacks; yes, but I am a more rounded, deeper caring, spiritual person now. 

I read somewhere that if you walked into a place and there was a huge table with crosses all over it and each cross represented your burdens/crosses to bear in life, that you would most likely pick up the one that was your cross/burdens in the first place.  It is good that we have no control of what comes our way.  I feel and believe that there is a 'higher power' greater than ourselves that knows what is best for our journey in life. 

Now, perhaps, what we can do to make those burdens/crosses lighter would be to reflect/focus on what they might mean to have crossed our path and learn from them.  Just maybe, they were put in our path for us to slow down and listen within as to what it is that this 'cross' is trying to teach me.  Sometimes we need to refocus and go down a different path on our journey. 

I remember many years ago now when I was diagnosed with RSDS/CRPS that I was just doing my thing. I didn't think too much about what was going to be happening in the future.  Just living my life and enjoying most of it, with my ten year old daughter.  I was a single parent with a good job and enjoying my work. 

And, than one day, it all changed.  Trauma from a previous surgery started to tailspin and that is when RSDS/CRPS entered my life and living.  The only thing that I really knew that I wanted was to survive as a good mother for my daughter for I was a single parent.  I HAD TO WORK AND I HAD A PURPOSE BESIDES MYSELF.  After crying the 'why me' and started focusing through support.  The 'Why Me' changed to 'Why Not Me'. My family, neighbors, church family and my work family were awesome!

I just want to say that I would never have made it to where I am now if I would have tried to handle RSD on my own.  EVERYBODY NEEDS SUPPORT.  RSDS/CRPS persons need support when all that they feel is  PAIN.  Empathy from another is the first step in healing.  Sympathy got me nowhere.  I wanted somebody to understand me and NOT feel sorry for me. And, if they haven't experienced RSD, they can still be there in love, caring and allowing you to just 'BE in the Moment'.  That heals and comforts pain.

You know, sometimes it is hard to cope and share and even get up in the mornings but if we don't keep trying we cannot help ourselves or anybody else.

So, on those days that we find it so very hard to move, move anyways!  Yes, call somebody and share ANYTHING with somebody.  This is the first thing that I found that helped me the most from going into a depression.  And, even if you don't say a word other than, "Hi, this is ______, I am not having a good day."  And, your friend or whomever you have chosen to call will take care of the rest for awhile.  BUT, WE HAVE TO START TO MOVE AND TRY TO REACH OUT.  The rest will follow.  Believe me, I am not sharing anything that I haven't experienced myself.  I didn't/don't want to just hear stories that sound good.  I always wanted to hear the truth even when it hurt. 

If I could wish anything today that I could say or do to help any person in pain but especially, to RSDS/CRPS persons since having RSDS has inspired me to start my blog; it would be to first and foremost, search for a purpose to live for, look for a passion to fulfill and keep your focus on something that is bigger than you are and/or your pain.  Take up a hobby and/or do something that fills your head/heart and life.  And, secondly, KEEP MOVING! 
I was told if I ever sit and did not move, I would be in a wheelchair the rest of my life.  I truly believe this because if I get the flu or I am off of my feet for days, I hurt and I know and reflect on what I was told.  WE MUST KEEP MOVING.

I worked for several years after my diagnosis of RSD.  The only reason that I could do this was because I had an awesome employer and I worked with some awesome co-workers.  I will never forget their support.  They allowed me to be an equal in the midst of my struggles and treated me the same as before I was diagnosed with RSD.  If any of you are reading this post, thanks, once again.  You all know who you are.  You're the best!
I remember having a button attached to the wall of my cubicle.   The button had a picture of a penguin on it.  The reading on it read: I can't fly but I get around just fine!  And, so DID I! 

Most importantly to remember, we can't go it alone.  It's ok to ask for help and than we all win.

Until next time,
God Bless!
Doris