November 12, 2014

A World With Complex Regional Pain Syndrome As My Constant Companion©

By Guest Blogger Samantha M. Adcock, board chair and executive director, Hope Over Pain

I live in a world with complex regional pain syndrome (CRPS) as my constant companion.

While on deployment to assist the Hurricane Rita recovery effort, I contracted an antibiotic resistant bone infection, osteomyelitis. (The infection is known as methicillin-resistant Staphylococcus aureus, or MRSA). The osteomyelitis/MRSA and two subsequent surgical procedures resulted in the development of CRPS, also known as reflex sympathetic dystrophy syndrome (RSD).

Physicians don’t know why it develops, but CRPS is a nerve disorder that usually occurs after a traumatic injury, surgery, sprain, fracture, infection or a period of immobilization.

CRPS/RSD is said to be the most painful chronic disease that’s known today. It’s also a form of causalgia, which is a rare pain syndrome related to partial peripheral nerve injuries. On the McGill Pain Index, causalgia scores 42 out of 50.

How does that compare to other types of pain? Arthritis pain is ranked about 18. Non-terminal cancer pain ranks 24 and chronic back pain is at 26. Natural labor and delivery of a first child is about 35. With a score of 40, the pain associated with the amputation of a digit comes closest to matching the intensity of CRPS/RDS.

Imagine This World

Now, imagine for a few minutes that we’ve traded places.

Imagine this is your new world. You begin and end every day with CRPS as your constant companion.

In your new world…the lightest breeze, touch, vibration, movement or exposure to cold causes excruciating pain. If asked, you couldn’t honestly tell someone when you last experienced a pain free day, or when your pain level had dropped below an 8 (on a scale of 1 to 10) for any significant length of time (two hours or more).

In your new world…you’ve been on numerous medications for the pain, and have experienced a variety of debilitating side effects that have included: loss of cognitive function, inability to concentrate, weight gain, dizziness, uncontrollable muscle movement, tremors, hair loss, elevated blood pressure, etc. There are two things that you haven’t experienced since CRPS became a part of your life…

  1. A night with more than four hours of uninterrupted sleep; and
  2. A day without pain.

In your new world a 10 is lying on the floor, curled in fetal position, unable to move or speak as tears stream down your face…Knowing that all you can do is lay there and endure. The only alternative is unacceptable. You refuse to give up!

Thank you for trading places with me for a little while. While you spent time imaging yourself in my world, I spent my time remembering what it was like to live in yours. My time in your world reminded me that there’s still hope. I have hope.

I have hope…that you remain healthy, happy and whole.

I have hope…that my world never becomes yours.

Editor’s note: November is CRPS Awareness Month. If you live in the San Antonio area, join Samantha and Hope Over Pain on Saturday, Nov. 15, at the CRPS/RSD Awareness & Education Seminar. Click here for more information.

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