Blog · Complex Regional Pain Syndrome · CRPS · Invisible Illness · legacy · Life · Personal · Photography · Platform · Reflex Sympathetic Dystrophy · RSD · Truth To Power

Free from the shackles of chronic pain.

I have been following this AMAZING CRPS/RSD Warrior on Instagram.. ALL her posts are about the fight and struggle that we all deal with by living with this cruel diagnosis!

I’ll be posting her photos/art work on here because her words are on point and hits deep down!

Here’s the first post-

“If I only could explain

How much I miss

that precious moment

when I was free

from the shackles of chronic pain.”

2 thoughts on “Free from the shackles of chronic pain.

  1. For me, the pain isn’t the worst of living with CRPS; I have “gotten used to” being in pain all the time..
    It’s the loss of function in my right hand. Every morning, there in the briefest of moments, I forget that I cannot straighten my hand nor make a fist. Then I see my shriveled hand and arm.
    It’s not being able to work, do yoga, garden…
    It’s been almost a year, but I am just now accepting somewhat that I won’t be able to do these things. I thought it I just worked hard and persevered, I would be able to “overcome “ this..
    I keep thinking there is if not a reason for this, at least a lesson, a new opportunity and purpose for me. I am working hard now in exploring and finding that purpose.
    I wish there was a better name for this life-altering illness- “Complex Regional Pain Syndrome” is woefully inadequate in describing the contractures, tremors and spasms, loss of function, systemic symptoms…
    It’s NOT regional- it’s systemic/central nervous system, and the struggle is prevention of spreading.
    Complex Systemic Dystrophy…?
    I think the sufferers should all take a vote on the next iteration of naming this devastating disease.


    1. I’m with you.. when I was first diagnosed 4 years ago, I wondered if there was a reason why I got this. What was the purpose. After creating this blog and learning not just from my doctors but from other people who are also going through this cruel diagnosis, I came to realize that maybe my purpose of being diagnosed with CRPS was to bring people together and to show them that they are not alone!

      All of us have CRPS in a different way and are dealing with it in different ways, but the pain and struggles are all the same!


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