THEORIES OF RSDS/CRPS

Good Day, 

I trust if you are still reading my blog that I haven't lost your interest on the subject of RSDS/CRPS.

I feel that it is very important to focus on the positive regarding this condition but it is good to understand as much about it as we can, as well.  Once we know to some degree what we are dealing with, than real progress in our perception can begin. It will help depression, especially.  Since information on this condition is so limited in the professional field, discouragement and disappointment is the first thing a person will hear in the midst of severe pain.  Than if a person is fortunate enough to find a doctor that knows/understands RSDS/CRPS, his treatment and prognosis at its' best, isn't a good one.  Such thoughts as: what am I going to do, there is no cure, my life is over, how am I going to keep my job and etc will fill you with despair. 

This is why I started my blog sharing my experiences as to where I am today and going backwards.  There is hope, there are better days and there are answers and help for the pain.

I will pen some theories about how RSDS/CRPS works.  This information is somewhat complex and nobody can say that this is definitely the way RSDS/CRPS works but it is the best that many researchers know. It can get very technical and difficult to explain. Some of the information for this writing comes from a Dr. Schwartzman's presentation at the RSDS Association many years ago, now. There are many articles on this subject but it is still unknown in many ways as to what causes it and how to treat it.

The Spinal Cord is where it is all happening.  Pain is carried through the spinal cord and research on RSDS/CRPS has shown that many different chemical reactions change the cells in the spinal cord causing the pain of RSDS/CRPS to become Sympathetically Independent rather than being dependent on the sympathetic nervous system.  This is why the doctors do know that spinal cord simulators and intrathecal pumps with morphine can lessen the pain and stop the changes in the cells that RSDS/CRPS pain can precipitate.  However, these types of treatment aren't for every person with RSDS/CRPS.

My doctor explained through an illustration as to how RSDS/CRPS reacts in comparison to your spinal cord and nerves to an electrical pole and lightening striking the pole.  When the lightening hits the pole and doesn't stop striking it...it sparks until the lightening stops hitting the pole.  When the nerves misfire, pain travels through the spinal cord...it sends a signal to the brain: of burning pain.  The burning pain goes on and on until the nerves are treated with something.  This is one reason it is hard to believe that the RSDS/CRPS pain is coming from someplace else rather than the site of injury.  The enemy is trauma.  The Spinal Cord has no clue as to that the trauma is...Trauma of some sort has lingered in ones' body for too long without treatment.  When this happens, havoc takes place because the alignment of the nerves, neurons affecting the Spinal Cord is in disarray.  The rest is what makes the terrible burning pain.  If the Spinal Cord is not working correctly, the flow of fluids/blood does not reach the injured area, such as a foot, arm or limb. Therefore, given no treatment to correct this interruption, atrophy sets in and bones begin to thin and muscle begins to weaken and the cycle continues to repeat itself over and over until treatment comes to its' aid.  This is why IMMEDIATE treatment from the first sight of any of the symptoms listed in various posts that I have written are vital to stop this cycle. Than, hopefully, treatment can begin for proper blood flow to prevent further damage. There is promise and hope at this point. 

My 'time frame' before diagnosis of RSDS was two years.  However, once I found out my problem and that there was some help for me; whatever the protocol was, I was thrilled because I had no HOPE before I walked through that particular doctor's door on that particular day.  Whatever it took for me to help the professionals, counselor, pastor, biofeedback, imagery, Spinal Cord Stimulation Implant, TENS unit, over 30 pain blocks in my back, given over 35 prescription drugs, hallucinations, social security disability and going through a near death experience; I knew that I had found a doctor that was going to treat this terrible burning pain.  And, this doctor knew the cause of the pain and what it was.

I was going to have an opportunity to have my life back to the point of  'living it' in a way that I could feel and experience hope.  I did not have that before that day and I didn't have to think or go any further at that time in my thoughts.  All of the above that I listed for treatment are the very things that I experienced to get to where I am now.  And, above all and most importantly was God's Grace, Love, Hope and Prayers. My church family, my family and friends were amazing, as well..

The long term issues that are the result of my RSDS/CRPS are still in my life from time to time.  This is why I have been told and believe that this condition can go into remission.  There are various things that will cause it to rear it's ugly head as quickly as one would see a snake in the grass.  Nevertheless,  I know that I have a life worth living and I am very fortunate to be where I am today. 

I have accepted the fact that this is my journey in life.  I can't change what is and it is a simple fact that sickness affects the immune system, anything that limits my activity/exercises, a sudden trauma and/or exhaustion can kick the RSDS/CRPS back in some form.  Again, it might be a much lighter cause of pain but the RSDS/CRPS still tries to stir up the burning pain, in my case, my feet and legs.  If I have a need to walk a long distance, my legs will become very fragile, weak and have a tendency to wobble a bit.  I have a power scooter for those times.  Otherwise, I need to walk everyday.  The doctor told me that if I stop climbing stairs and walking, I will be in a wheelchair.  So, guess what?  You got it, I walk, I climb stairs everyday.  Anything that affects the system's spinal cord of misfiring neurons/nerves takes a toll on RSDS/CRPS persons.  I have peripheral neuropathy and a few other physical conditions that are a spin off of RSDS/CRPS but I can function and I enjoy life.  I just can't do some things that other people can and/or take for granted.  But, we all do this everyday to some degree.  I feel most of us can look around and see how blessed we are.

Family is vital in ones' support.  My husband has been my 'rock'.  He is always supporting me in some way whether it is helping me to slow down or giving me a push to stay active for my continual maintenance. This takes none of my time but all of my time. It is a paradox.  Finding the balance in all areas, physically, mentally, emotionally, spiritually, is the key. 

I have learned volumes in ways that I would have never known without experiencing this special 'school of learning of RSDS/CRPS'.  For some reason that I probably will never know, God allowed this is cross my path on my journey.  Now, my mission is in helping other RSDS/CRPS persons.

As I close for tonight, I have chosen a prayer of Grace.  First, I wish to share something that I heard a lady speaking at a conference say one day. She was the chosen speaker for this particular conference.  She began by sharing that her husband was on dialysis and on the waiting list for a kidney transplant.  He was having a very difficult day and on that particular day he said to his wife, "I feel sorry for us!'.  This was her reply, "well, you can if you want to, but just remember, it won't help us and we will never be able to help anybody else!' 

Prayer of Grace
Dear Lord, You are the Creator of the universe, and I know that Your plan for my life is grander than I can imagine.  Let Your purposes be my purposes, and let me trust in the assurance of Your promises.  Amen


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