Sunday, March 11, 2018

10 Year CRPS Anniversary Tweaked

Complex Region Pain Syndrome CRPS

A time to celebrate

Welcome! I've officially been blogging since 2012. I'm not always good at consistency and today I'm celebrating some of that reason. Yes, you read it correctly. I am celebrating CRPS. 

For those of you who do not know about CRPS let's get you up to speed. It is is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury.

What does that really mean in everyday terms? Let's start with... the nervous system went into shock and never really recovered from it.

My story starts in June of 2008 I wrecked my car, my arm went through the steering wheel as the airbag deployed. I broke the radius and ulna bones in my left arm. As the days turned into weeks and the weeks to months my arm continued to swell, always hurt and no amount of therapy, drugs, nerve blocks, mirror therapy, could get the swelling to stay down and in turn very little healing was happening to surrounding tissue.

I could see in x-rays the plates and screws in my arm allowed the bones to heal. But let me tell you the pain I was experiencing was not showing that at all. There was constant sensitivity to the back of the hand even showering would create extreme needle piercing pain from the back of my hand all the way to my shoulder. Redness and swelling never ending, we purchased a new wedding ring for me 2 sizes larger to accommodate continual swelling and still at times I have to remove it.

I do not remember the exact time of diagnosis but it was very early on, within the first few months (this is unusual for this disease, I was lucky). Physical Therapists and my Doctor/Surgeon were working pretty hastily/steadily to try to put this mess in remission. (Once you contract you are considered lucky to get it into remission, as of today there is still no known cure.) While I was living this, and knew the diagnosis it was not within my current scope to grasp what was happening to me.

Physical Therapy sessions would leave me so exhausted I would literally pass out and sleep the rest of the day. I was doing less and less and yet exhausted more and more.

 It seemed as though life was closing in so quickly. There were easy daily tasks I could no longer do, clothes and shoes I could no longer wear because the pain was so overwhelming. Yes, shoes, and yes let's recap it was my arm. I have always been susceptible to migraines and this new thorn in my world rubbed those in a whole new incorrect way.

CRPS also known as Causalgia
Before I knew it I was spending all my 'free time', not at work, or doctor appointments, literally in bed. I was exhausted, in pain, and frustrated. Everything they tried on me was not the magical remission answer and I did not understand we were looking for grains of hope not mountains of healing. So as a few grains appeared I was not very optimistic or hopeful. The bills were stacking higher than the clothes I could no longer wear. The list of medications and treatments I had adverse reactions to were growing by leaps and bounds as well. Yet I tried to remain positive and cheery.

So that in a very brief nutshell is what CRPS looks like to me. So why am I celebrating this horrible monster after nearly 10 years of complete life devastation?

CRPS is not the only chronic disease that people suffer endless pain while it's pain levels maybe higher than most, it's frequency is common to many others.

So yes, I celebrate that my eyes were opened to many other suffers on this planet we share. I celebrate the small grains of hope I originally did not know I should. I celebrate in the midst of this 'hell on earth' I can find joy in the journey. I celebrate each day as I realize your life truly can turn on a dime or in a moment and for me and many other Warriors of the disease we are faced with this reality daily.

So what really is this part of the "Tweaking Corner" Blogs all about? It's about emerging new life from the old. It's about breathing hope where little may exist, it's about sharing a journey that many may walk and only few may call CRPS. It's remembering everyday may not be good, but everyday has something good in it.

As always it's tweaking everyday life (with CRPS, Fibromyalgia, or other chronic pain) and making it uniquely your own. Kind of a tool for literally surviving everyday. Through time I can imagine my story will continue to unfold. I hope it helps the reader either better understand themselves or someone they are care giving. I pray readers can comprehend the paradigm shift between happy and healthy, bad day and good life. While I cannot always predict what my body will do, I can always guide my mind to better reactions. I cannot make my body have a good day, I can choose from my palette of options how to make this the best day possible. On someone else's scale it may have the resemblance of complete fail or bad day, but in my life living in my body it's success. I want you to find that too.

A million thanks for reading as the Tweaking Corner adds another new direction...


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CRPS Hope for your nervous system

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