Snowy Range, Medicine Bow Pass, Wyoming.

Road trippin’ with CRPS

I just returned from a cross-country road trip as a reward to my newly minted high school graduate. 5,000 or so miles there and back with my husband, Matt, son, Daniel, and daughter, Shannon, all in a cramped little black Toyota Prius.

That would sound daunting to the most normal and well-adjusted of people.

However, I’m not normal. Well, not normal in the sense of what is publicly accepted as normal, anyway.

Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD) 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. It is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas. CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index.

I have CRPS in both legs and arms. It started with a smashed right kneecap injury I sustained while downrange (deployed) in 2012. The original injury was fixed with a kneecap replacement in 2015, but the CRPS remained.

The CRPS started in my knee the moment I injured it and with time has spread to all my limbs. Sometimes it manifests itself elsewhere. For example, about six months ago I got a black eye out of nowhere. I was not hit or bumped. It was just there all of a sudden and then disappeared a few days later as mysteriously as it appeared.

So back to the hours and hours of being scrunched inside our family clown car, aka our Prius, while we made slow progress from central Ohio to the Olympic Peninsula and back.

Adjustments had to be made. As the minutes ticked by, the more uncomfortable I would get. I started mapping out how many miles it was to the next rest stop so I could stretch. When the stabbing and aching pain gets to the point of intolerance, standing up and shaking it out is like hitting a reset button. The pain magically floats away just to start creeping in again the longer I sit still in one spot.

If a rest area was out of the picture (aka Nebraska and Wyoming), I would stretch out in the car meaning that I would practically have my feet on my son’s head in the front seat.

Also shoes where out of the question. As soon as I got into the car after each stop, the shoes would immediately come off.

At night after hiking around the peninsula, I couldn’t get to sleep because of the dreaded pins and needles feeling. You know, where it feels like a thousand bees running up and down your legs. People call it Restless Leg Syndrome.

Well for me I know it’s the CRPS.

CRPS is not all pain.

CRPS can cause Restless Leg Syndrome, hives, bruises, rashes, skin sensitivity, migraines, blurry vision and fatigue in addition to the pain and swelling that’s the most indicative with the condition.

My husband and I at Ruby Beach, Olympic Peninsula, Washington State.