CRPS In Me

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My CRPS came about 6-8 weeks after my spinal fusion surgery in May 2012. It start with swelling from below the left knee and this intense burning like pain. Was tested for DVT(deep vein thrombosis) and had a series of blood tests, EMG. My neurosurgeon who did my surgery referred me to a pain management specialist. Coincidentally, he had treated me before with injections and after an extensive exam, came up with the RSD(CRPS) diagnosis.

The pain intensifies as it moves from the top of my left calf to my foot. I've have only had it for a little over 6 years. In April of 2017, I had opted for a St Jude Proclaim Elite SCS implant. Like anything else it is a tool, not perfect, but it does provide some relief. Recently in April 2018, after an SCS program update, the CRPS moved into my left arm. My left leg has the 'cold CRPS' and my arm has the 'hot CRPS'. Still contemplating if having surgery to extend my SCS higher will have any helpful effect.

Tried the drugs, physical therapy, sympathetic nerve injections and the SCS seems to be helping but for how long is anyone's guess. I have been diagnosed with having essential tremors 2010 and just in the recent months began experiencing seizure-like activity on my left side unrelated to epilepsy. In addition to the CRPS, I have struggled with PTSD, anxiety, depression, TBI and suicidal feelings.

I had to retire from my job earlier than expected.Trying to keep it together can be hard but not impossible. Its hard for my friends & family to understand what I go through, but luckily I have a small circle of friends and family who get it. My wife has been my biggest supporter and my caregiver. Some days are harder than others, sometimes I can do ok, other days I am wiped out. 

Every day I fight to survive and thrive. Every day I don't fight from losing the will to live, I fight for the will to live. This is why Jaime Weisman's quote is important to me.

"Most people live in fear of terrible event changing their lives. For the chronically ill, this terrible event has already happened, and we have been let in on an amazing secret: You fight and survive! There is no other way. You adapt, and your life changes, but in the end you go on with whatever compromises you have been force to make, whatever losses you have been forced to endure. You learn to balance your fears with the simple truth that you must go on living"

- Jaime Weisman, As I Live and Breathe: Note of a Patient-Doctor