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

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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Stages of RSDS/CRPS

 

Greetings,       THIS POST IS A REPEAT BY REQUEST

I stated in my last post that I would write about the STAGES of RSDS/CRPS.  Reflex Sympathetic Dystrophy syndrome presents diagnostic difficulties. RSDS/CRPS (Complex Regional Pain Syndrome) is a debilitating disease that is among the most misunderstood by health care professionals contends Audrey Thomas, nurse coordinator at Thomas Jefferson University Hospital in Philadelphia, and co founder, along with Roslyn and Francis Davis of the RSDS Association, which they formed in 1984.  It does not seem to make a difference in the time of reference information; the same issue is PAIN and how to control it. 

I will review a little of the condition and symptoms before I list the stages.  Since the disease follows a trauma or micro traumas sustained over a long period of time, it is frustrating.  RSDS/CRPS usually affects one or more extremities but also may affect other areas.  Further, it involves the nerves, skin, muscles, bones, and all tissue levels. 

The only common denominator in all the patients is pain, but it's not normal chronic pain; it's acute pain that is only chronic in that it lasts so long.  To reverse the adverse changes taking place, you have to get control of the pain.  In  most diseases, the pain is considered secondary; in this disease, pain is primary.  If you control the pain, you control the disease.

There are four major components to RSDS/CRPS: sympathetic, where patients experience severe burning pain, vasomotor instability (which causes color and temperature changes), and hyperhidrosis; sensory, which encompasses hyperesthesia, hyperpathia, and (in extreme cases) allodynia; motor, where patients experience weakness, increased muscle fatigue, focal dystonia, and tremors; and tropic changes, including skin that become almost 'brawny' looking, sleeplessness and severe osteoporosis.

The most crucial thing is to receive a diagnosis to the disease as early as possible.  If the patient has not been diagnosed within a year, there's less than a 5% recovery rate.  Note the word, recovery. This is different from remission and/or manageable. The major and constant symptom is burning pain.  Other symptoms may include:

RSDS/CRPS

• swelling near the site of injury
• warm, red skin at first
• cool, bluish skin later
• softening of bone
• increased sweating
• tenderness and stiffness in joints
• muscle spasms
• loss of motion

Prognosis:  Three Stages: Good if treated early, within first 3 months.  If treatment is delayed, RSDS/CRPS may spread from the original location to involve the entire limb.  After 6 months, changes in bone and muscle may be irreversible, and pain persists. 

Duration of RSDS/CRPS varies. In many cases the pain continues on for at least two years and in some cases, indefinitely, to different degrees per person. 

There are many persons out there that say that this condition never goes into remission.  The level of pain to what degree, per person, is determined on several factors.  The longer the trauma goes on before the person can get treatment is the number one factor in RSDS/CRPS in determining or evaluating remission, manageable, indefinitely and to what degree. The second factor is the kind of treatment that is given for the physical condition, mental, emotional and self-help in holding depression at bay.  These factors make a huge difference in the degree of lingering and painful symptoms of RSDS/CRPS. 

There are volumes of things one can do to help themselves along with the professional help from your doctor, counselor, family, friends, library material (biofeedback, imagery).  The RSDS/CRPS person can do this at any stage of their condition.  How do I know this?  Because I have experienced all of these areas over the many, many years since I was diagnosed with RSDS/CRPS and still continue to exercise these areas on a 'as need basis'.  Yes, RSDS/CRPS will always be a part of my life.  However, through a better understanding of the condition and learning tools to help me manage my RSDS/CRPS, I am living a life that is free of that 'burning pain, on more days than I am experiencing the 'burning pain'. 

My RSDS/CRPS was not diagnosed for almost two years after the trauma from a simple surgery.  One day at work I felt as if I had a rock or something in my shoe.  It hurt to walk.  This is totally unrelated to my surgery or so I thought at the time.  Since the RSDS/CRPS was not diagnosed until that length of time, I have long term issues with my right foot, especially.  The bones were starting to thin at the time I was diagnosed because the proper amount of blood was not flowing to circulate nourishment to the foot.  There is a whole realm of terminology as to how the RSDS/CRPS causes firing to the nerves that affect the spinal area.  I will go in to more detail in another post. 

I realize that some of the material that I post might be boring to some who read this blog but the more information RSDS/CRPS persons can learn about this condition the better one can manage and cope with it.

I have a heartfelt mission to help anybody that I can if they are interested. 
Everybody have some kind of a challenge that they are experiencing in their life.  

I feel experiences are real and valuable when we share them in humility.  How many people do you know that have a condition that is a challenge to them 24/7?  I am sure there are many.  We are all in this 'circle of life' together. We all just have different challenges.

My hope and prayer is that everybody that wants to find a mission, bigger than themselves, in any circumstance, think about what they have to offer somebody. 
This gives purpose and meaning to any challenge.  We learn and grow from one another.  We might think of it as our 'Rainbow of Love and Hope'.

Until next time, 
God Bless!
Doris