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

ATTITUDINAL HEALING

ATTITUDINAL HEALING

Attitudinal healing is a choice.

Is this something you can do?

You bet your life you can.

It is already inside you!

Just remember, peacefulness is selective

to all in this world to choose.

The earth can shake and the mountains can rumble.

However, peace is not something you want to lose.

These principles of 'Attitudinal Healing'

are worth their weight in gold.

If you would like to learn more about them,

choose to make them your primary goal.

We can focus on the 'whole of life'

instead of on the fragments, that come our way.

Living life in 'its fullness' is a matter of choices.

Share our gifts from within or hold them at bay.

The essence of our being is LOVE!

Please never underestimate the power in this call.

Positive emotions and one's attitude

can assist healing in our health and wholeness for all.

                                           copyright 2002 Doris Swertfeger

Challenge Mind, Refocus, Changes Attitude

Good Morning, 

Thanks for a Blessed Thanksgiving fills my heart this Holiday Season.  Soon the celebration of Jesus birth.   'Happy Birthday, Jesus' and many 'Thanks', once more.

As I begin in my sharing, I want to express to everybody that is reading this that I am certainly not a scholar in knowledge of some of the topics that I share.  However; the experiences that I pen are from my heart to your heart.  Therefore, this alone frees me up to share more with ease. 

I spoke recently with someone that has contact with an RSDS/CRPS person frequently.  In my next writing, I will point out the stages of RSDS/CRPS. This is very important to understand.  It can change our attitude in our healing process and everyday depression and give hope to us. In light of this, I want to share views of thoughts, feelings, attitudes and the importance of an 'open mind' in any and all research, hearsay, experience in dealing with this condition.  I have found that once we are open and our hope is renewed in a way to cope and feel and believe in our heart that we can refocus, our life has purpose and we focus on the things that moves us forward. 

I have learned that the mind is a powerful thing.  Therefore, the brain can trick our minds in thinking and believing what we are feeling is real without any room to reevaluate our circumstances. I remember in my treatment after many pain blocks and over 30 different medications that the doctor wanted to perform a test to analyze my pain level in comparison to the brain impulses.  He injected a medication in a IV drip to numb most of my surface body from the wrist up.  He would inject needles into my flesh after the numbing solution supposedly took effect and study my reflex response. 

My first reaction was that he thought this was all in my head.  I was insulted and resentful. How dare him to do this or even think that I was making this pain up. After a long process of my choosing to have an open mind and trust in the doctor, did I settle down to listen and take in his knowledge as to how this medical procedure works. 

The result of this particular visit was one of many visits that helped my treatment to progress.  No, the pain wasn't in my mind, yes, I still do have RSDS, medications and pain blocks did follow, but I had a different thinking process starting to unfold. 

We all know that what we 'feed' something is what it will become.  An illustration of an Indian family goes something like this.  One child was good and another child was evil...the third Indian child ask his father which one he would be.  The father stated:  Son, it will depend on what you 'feed' your mind with the most. 

I shared with the doctor as to how I was coping and introduced to him how I had been receiving counseling through my pastor.  My doctor was impressed as I shared with him some of the Attitudinal Healing studies that I had experienced in our church setting.  My doctor, in turn, asked to speak to my pastor and as a result: A study was created in sharing, teaching and helping similar persons to copy through the mind set of: Body, Mind (patient/person), and Spirit.  To illustrate; my doctor/physician represents the study of the body, Mind was me as the patient/person experiencing the condition, and my pastor, representing the Spiritual side.  This was tremendous.

I share with all who read my experiences in living with RSDS/CRPS that these techniques can be used in any life situation.  We all experience hurts, losses, conditions that effect our living everyday.  Our thinking, our emotions, our pain, our grief are all a part of our makeup.  However; we are all similar in 'the very middle' of our bodies.  We might have different colored skin, live in different houses, have different wealth but we all are still alike 'in the very middle'.  God made us this way and He also, can give us joy, peace, love and hope in the midst of whatever circumstance we find ourselves in.  We will all find ourselves a little more whole and human and happy when we share and work together. Perhaps, each of us at some point, can say but more importantly feel like saying: Let it start with me.  Remember to hang on to the 'Golden Rope of Hope'.

In closing, when we challenge our minds, refocus our thinking; it does Change Our Attitude.
Until next time, May God Richly Bless and Keep You In His Care. 

'WHY ME?' 'WHY NOT ME?'

October 28, 2012 2:29 PM

'WHY ME?' 'WHY NOT ME?'

God has a Purpose, a Reason, for a Season

I can say, 'Thank You' for my 'dis-ease'.
I am thankful for all it is teaching me.
I have learned that health is a gift.
This is what my adversity has grown to be.

My adversity can be a blessing, it has granted me a mission.
'It takes none of my time...it takes all of my time',
A paradox, indeed.
I share 'my story' to help others of 'similar kind'.

My path has difficulties on the way.
However, there are places not yet seen.
Many people not yet met
and prayers of hope appear on the scene.

God has a purpose in what HE allows.
I feel in the path of my pain... 'I become' and grow.
God's missions vary but this I know
HIS mission I cherish, even, if helping just one to know.

Thanksgiving comes from my heart.
I mean this in simplicity, without cliches, you see.
My life's journey is just 'my story'
where, 'Why Me?' has changed to 'Why Not Me?'

At the end of the day, it serves ALL.
'Agape Love Abounds'

(copyright) Doris Swertfeger
2002

Window of Opportunity

October 28, 2012 9:35 AM

Today I wish to begin by giving 'Thanks'! Today is a cool, windy Autumn day. The vibrant colors of the Autumn leaves are a reflection of God's hand.

Giving 'Thanks' give me a feeling of peace. An oneness with our God. I have this belief that God has a sense of humor. I can just imagine HIM saying something similar in our day as 'I GOT THIS'. Moreover, I believe HE has.

I think in our busy living, our grief, hurts and in our comfortable style of living, we sometimes crowd out a space for our loving Heavenly Father to enter. Time, people, relationships, morals in our culture tend to reshape our very essence of our Authentic Purpose and Splendor. Therefore, 'Choices Matters'. I 'Thank God' for HIS Awesome Forgiving Love.

I will share more in detail my 'near death experience' another time. I will share that after I realized that God wanted me to return to this mortal world, I become angry at God. Yes, I certainly did. 'WHY' entered my thinking. As time moved on, I gave up the fact that I was not going to return to a place that was glorious, yet. God was not going to allow it. As I continued to pray, trust and discern as to what HIS WILL was for me, HE gave me the words to pen a poem titled; 'WHY?' 'WHY NOT ME?'

The next writing I will share this poem.

Until next time, May we always give Thanks in all circumstances. God Bless and Peace, my friends.

Doctor-Patient Communication

October 13, 2012 1:18 PM

Hello Friends!
I want to begin today in my continued sharing of my story/journey with RSDS/CRPS. I had written earlier that CRPS was 'Chronic' and it should have been 'Complex'. So, I want to correct myself in this statement first, today.

Today, I want to share with you how important 'open communication' is a key factor in your doctor/patient (person) relationship.
And, I feel that all of our experiences can be helpful and cross the threshold with one another in hopes to strengthen us separately and collectively.

I had stated early on that finding a doctor and a diagnosis to your pain is an important key to your treatment and recovery time into remission. It is vital for you to find a doctor that you can feel comfortable. You have a right to know and understand how the doctor is treating you and sharing with the doctor in an open dialogue will speed your treatment. If you do not understand your treatment, ask questions until you do and/or speak up. Just remember, if the doctors wanted to treat something that could not talk,
they could/should have been Veterinaries.

I remember after several months of walking with the aid of crutches my doctor took them one day and threw them across the room. He did this to make a point. Well, he did, indeed. I wanted to leave immediately but I knew that I would only be hurting myself. He told me that I had to walk on my foot or my foot would die due to lack of circulation of blood. The bones in my foot had already started thinning. He told me that I would have to undergo many pain blocks to withstand the pain and I would possibly have to enter a rehabilitation with a dripping IV to control the pain. He said that I would need a number of medications for possibly a two year period to control the RSDS/CRPS that was trying to take over my nervous system.
Please know that not all doctors treat in the same method and sometimes the use of equipment is/will be necessary for an individual.

Nevertheless, after approximately 18 to 25 months, I had the honor to speak at a RSDS Symposium as a person living with RSDS/CRPS in South Bend, IN. There were sixty doctors that attended nationwide as well as RSDS/CRPS persons. I will always remember feeling the bond of kinship among those there that particular day.

After I had spoken the words relating to the 'doctor/patient/ relationship versus the Veterinary profession; at intermission, a number of doctors thanked me for sharing the need to communicate with their doctor.

So, please realize that you are the spokesman for your body. Lean into your treatment with confidence that you with the help of your doctor will/can turn your pain into something more livable than as you see/feel it today.

We will share again, soon. God Bless!

Choices Matter

October 2, 2012 1:20 PM

Ever have a day when "Choices Matter' just doesn't seem fair. Things get in the way as to how you think your day will go? The saying: IT IS WHAT IT IS..but the rest of that statement is not easy to put into action. For example, your dog is sick, your child spikes a fever, you cannot do something that you was able to do yesterday. Last night everything seemed just fine.

NOW, reflect back to your feelings of 'Choices Matter'. The dog is just a dog, no big deal...but is it? It is YOUR DOG. Your child spikes a fever, so what, it will be over in 24 hours, or will it? It is YOUR CHILD and 24 hours goes into a week and I am a working mother. I could go anywhere I wanted yesterday but today, I CANNOT. I am active and I have goals!

..So how does 'Choices Matter'? It might depend on how we handle those Choices.

All in all, the 'thought of the day': 'CHOICES MATTER' on our worse day and our best day. NONE OF US ARE EXEMPT. Every day we make hundreds of Choices and the quality of those choices determines the quality and attitude of your day and your life.

Oh, the rest of the saying: IT IS WHAT IT IS...BUT IT WILL BECOME WHAT WE MAKE IT.

Tough love matters! We all need one another, especially, on those days that 'Choices Matter', just does not see fair.

Shared in Love...

Until next time....May we listen and share with one another..we are all on a journey....we just have different stories to share and hopefully, help one another.

God Bless and May we always be Thankful.

Searching for a Purpose in My Adversities

September 23, 2012 7:39 PM

Tonight, I want to focus on all RSDS (Reflex Sympathetic Dystrophy) people. Persons with RSDS are not 'Patients'. Please understand that anybody with this dis-ease condition are normal people and not 'patients' that are crippled and are no use to anybody and/or ourselves/themselves.

However, if there is anybody reading this article tonight that has RSDS, "YOU" are miserable! And, that is why I want to focus tonight on 'YOU', especially. I know when I was experiencing my greater pain it was very, very difficult to listen or care what anybody else was telling me to do. People meant well in their effects of support, but all that I could center in on was 'PAIN'.

Now, please stay with me in my thoughts and feelings. I have no intent of sharing 'my story' with the intention of 'can you top my story'? And, I have no intention of sharing as to reflect how I experienced so much pain and sharing 'a pity story'.

We all have a 'story'. They are just different. Everyone of us are 'walking' some kind of 'journey'. We all have hills and valleys. I have found that any experiences that have come our way 'invited or uninvited' can be stepping stones to a fuller and richer insight for ourselves, our families and others by walking this way.

There is 'purpose' in our adversities but it is ok if you can not see that today. Hold firm and stay focused on the immediate just now. My first focus/purpose was my ten year old daughter at the time. I was a single Mother. The rest was survival and I had to search every book, tape, professional help, friends that cared and but did not understand, family and I had to dig deep within whenever I could to 'a faith' that I had difficulty trusting in my PAIN. But, little is better than none. Just crawl deep within and hold on to 'hope' for starters.

I have found it is very important to stay focused on the 'bigger picture' to, first, survive. So, from here I will share a little more of 'my story'.

This is a question that was asked of me many years ago now as I was experiencing/searching for a diagnosis as to why I was experiencing so much pain and could not walk without crutches.

WHAT WOULD YOU DO IF YOU WERE TOLD BY DOCTORS THAT IN MONTHS OR YEARS TO COME YOU WOULD SPEND YOUR FUTURE ON AND OFF IV pain medications, JUST TO CONTROL THE PAIN, AND THAT YOUR CONDITION WAS NOT CURABLE?

Well, of course, I had mixed emotions and was fearful. This is why I want to speak to the hurting tonight of RSDS. I want to offer you words of hope that will seems as a paradox tonight. For, I have just stated that it is very difficult to receive any encouragement in the midst of your pain but it does get better. There is hope. And, when YOU can not feel it or find it, hold on to anything and everything that you can read, hear or find to give you hope and strength just for today. Tomorrow will come soon enough to begin again. This 'moment' is all that you have. Take one moment at a time.

And, I realize that one's faith can be wounded during this time of pain, too. So, rest in others prayers and support. And, remember, YOU do not have to explain what and how you are feeling.

I was forced to quit my employment, endured over thirty pain block treatments, had a surgical procedure Implant pain device placed in my tummy and an Implant in my spine to control the pain of RSDS in my legs and went through a 'near death experience.'

I will continue another time but please know that I am a
vibrant, alive example and real evidence as to how one with
RSDS can have a full life after/with (remission) RSDS.
..... Next, we will walk through how this is possible...it is, my friend! Please do not ever give up! I will be praying for YOU tonight and every night. God Bless you!

HOPE

September 11, 2012 1:28 PM

I find myself reviewing my journey of RSDS as a 'Disease'. And, as I continue 'my journey' from days, to months, to years now, I find different words to describe RSDS other than a Disease. It is a Dis-ease, it is an inconvenience, it is 'a teacher', it has been sent my way for a reason.

One can label it whatever they would like. Since I will only share from my experiences, I can share that I have heard many cliches over time. It doesn't matter at the end of the day what you call it! It is real and becomes a part of your life, forever, in some fashion!

It is in my world and in many others across this land. And, I truly believe in my heart and mind that it is 'IN THE 'DIVINE PLAN',THEREFORE, THERE IS PURPOSE'.

This brings me to a gift that God has given to me in this very statement of what I have just penned. HE gave me His Love, His Peace, His Hope and His Grace in allowing me an avenue through HIM to cope and reflect on His Love and Healing Power and Poetry was born during this very painful trying time. Now, how could this be?

I will try to explain this through one of my first writings as I was flying in an airplane on my way back from Houston, Texas in 1989. It was a beautiful day and my first ever airplane flight. I was flying alone. My neighbor was so kind to drive me down to her second home in Texas but she wasn't coming home for months. I had a ten year old daughter to care for back home. I was hurting, I was scared, I was alone or so I thought. The following writing will explain to you as to how my 'Real Journey on Purpose' began.

"IN THE 'DIVINE PLAN', THERE IS PURPOSE"

I found a 'little friend' that day high up in the sky. I pulled out a white piece of paper and sketched a little girl, she didn't look like much of worth with laces loose in her shoes. She looked scared and at a loss as if she didn't know what to do. But all at once she looked up at me so humble and didn't bat an eye. She only put her arms around me and told me there is 'HOPE'. 'Hang on tight' and never let go of the 'Golden Rope of Hope'. I shared how scared I was and didn't know what to do but she assured me with 'HOPE' we would see this through.

This awakening experience that was unfolding before my eyes revealed to me that in His Divine Plan, there is Purpose. HE had sent me 'HOPE'!

HOPE reminds me that all things happen for good when we reflect upon our 'hope' in the Divine. We can choose to go within our very being and tap into our resources to live our life to the fullest in a way that is 'divinely' meant to be.

The writings you will read and some of my experiences put into poetry are from my heart to your heart. I share in hope to touch another in their heart's mission to help them find 'HOPE' and 'Healing' through their experiences, too.

I thank God for entrusting the blessings and challenges in my journey that have been divinely planned for me.

I wish to thank the many people that have helped me stay focused to always have 'HOPE' in my vision to seek the ultimate purpose. I firmly believe 'IN THE DIVINE PLAN', THERE IS PURPOSE! I invite you to continue walking with me as I share 'my journey' in The Wonderment of Life'. God Bless You.

We All Have a Story (This is My Story)

August 28, 2012 5:14 PM

Today is another day to begin. As I have shared, my purpose and goal in starting this blog and sharing my story, it is in hopes that it will help somebody. My story is just 'my story'. We all have one it is just different. So, with no more delay, I will begin my story.

Many years ago now I had a simple surgery. My doctor assured me that I would be back to my bowling that I loved within two weeks. That has been 24 years ago. I have not picked up a bowling ball since. After several months of misery with pain that couldn't be diagnosed here in Evansville, I headed to Houston, TX with help from my neighbor that knew of a doctor that might be able to offer me some help. She arranged for this doctor to call me to assure me that I, indeed, had a problem that he felt he could offer some advise to lead me in a healthier direction.

I want to share my diagnosis here in the beginning in case whoever is reading this with this disease will stay focused on my story. I was diagnosed with RSDS (Reflex Sympathetic Dystrophy Syndrome). IN later years, it has also been noted as CRPS (Chronic Reflex Pain Syndrome) This disease is a very painful chronic neurological disease effecting an estimated 1.5 to more than 6 million Americans.

This is a disease that features a group of typical symptoms of pain, a burning sensation, tenderness, and swelling of an extremity associated with varying degrees of sweating, warmth and/or coolness, flushing, discoloration, and shiny skin.

The exact mechanism of how RSDS develops is poorly understood. This is a huge problem. It will make all the difference in your life if diagnosed and treated early on.

In my experience, you can read all you can of all theories that you can but until the right doctor can diagnose your condition as RSDS and not just treat the symptoms is a matter of having quality of life in months and years to come.
Some theories include irritation and abnormal excitation of nervous tissue, leading to abnormal impulses along nerves that affect blood vessels and skin. The involuntary nervous system, peripheral nerves, and brain seem to be involved.

NOW, WHAT TRIGGERS RSDS AND/OR CRPS??

An injury, surgery, nerve irritation by entrapment (such as carpal tunnel syndrome), shingles, shoulder problems are just a few things that might trigger the dreaded chronic pain cycle that at times might seem to never have an answer, solution, relief and/or hope for enjoying your life again.

In addition, a young boy running into home plate playing baseball and hit his elbow at just a certain area or a man working at a construction site and slip and hit his knee and soon afterwords states that it feels like a red hot poker is against his leg.

I will share more stories with you that you will know that nobody is exempt from this condition but first and far most, I want you to know that with the proper treatment and right attitude and faith, you can overcome this disease from crippling you physically, mentally and spiritually.

I am a happy living testament to this. So, I invite you to check back in to 'my story' of 'The Wonderment Of Life'.