My Journey Living with Reflex Sympathetic Dystrophy

It figures I'd end up with a chronic condition not many people have heard of, although millions of people have it. The most commonly known name is Reflex Sympathetic Dystrophy (RSD). It was renamed Complex Regional Pain Syndrome (CRPS) in 1995 to try to more adequately describe the nature of this beast.

It began two weeks after I broke my knee at work on February 5, 2003. CRPS typically starts after a minor injury or surgery. The process itself is still not fully understood. There's no way of knowing who will get it and who won't. I'm one of the lucky ones picked to be its companion. The short answer to how it works is that it short circuits the nervous system beginning a vicious cycle of pain, but it's so much more than that.

My youngest daughter was turning 9 that year. We did everything together, going to the park, running, shopping and poking around stores for fun. RSD changed not only my life, but the life of my family. From being extremely active to almost losing the use of my leg affected us all. Although I got my own two feet back under me, the challenges and changes were only beginning.

The Physical

CRPS can spread throughout the body, with or without another injury. It can, and does, affect internal organs as well. RSD blazed a trail through my body, leaving havoc in its wake, taking 11 short months to touch every one of my limbs, my hips, hands, feet and shoulders. Only my torso, back, face and internal organs were spared at the time.

Treatment through worker's compensation was less than stellar, leaving me out in the cold. The roller coaster ride I took each day showed me the highs and lows of pain, how much the lightest caress of air across the skin can hurt, what it feels like to be roasted over a fire and how a fish feels flopping around on dry land. CRPS decided it needed one last item before it settled in for the long haul, electricity. It's quite rude to feel like you're being electrocuted over and over again.

On the outside, my feet, legs, hands and arms turn a rainbow of colors. The longer my legs are hanging off the edge of a chair, or just standing up, the darker the color gets. My skin began thinning until brushing against the edge of plastic cup is enough to draw blood. Once smooth skin became extremely dry, then the RSD "goosebumps" roughened up my legs.

Sensitivity worked its way beyond air to touch. It's hard on super sensitive days, or when my pain is high, to have to say "Don't touch me," to my daughter, because even the lightest touch sends my pain soaring further. I have come to despise those three little words. I can feel the weather changing. Muscles and bones ache down deep, pain as usual, along with a burning deep in the bone marrow that nothing puts out.

Before medication controlled them, I had painful muscle spasms. I still get them if I overdo it, pushing my body past its limits. The spasms are worst in my left leg, but the right leg will jump in on the action if the other one gets going. It can last upwards of an hour non-stop.

Bumping against a table or wall wouldn't hurt a "normal" person, but it can bring tears to my eyes, doubling me over in pain. Feeling like your bones have just snapped in half or been crushed is not a pleasant feeling at all.

The Emotional

I meet the challenges and changes of RSD with many different emotions. Most of the time humor wins. A tag line you'll see with my name is one I made up, laugh until you cry, don't cry until you laugh. It's how I try to live each day. The pain wins at times, making me cry an ocean of tears and longing for someone to take it all away. Some days the pain makes me angry enough to start screaming long and loud.

The "no cure" clause of CRPS is the worst part for many people to deal with. The lucky ones find a treatment that works and are able to go into remission for a short time, or a long time. I've never had the pleasure of meeting that aspect of RSD. I keep hoping maybe I will one day, but I don't dwell on it.

I faced the "really sucky disease" head on from day one knowing what it might do to me. I was unprepared to face the reaction from other people who, like me, have no clue what RSD is and what it can do. To have a stranger give me a funny look at my weird way of walking on a bad pain day doesn't bother me. After all, they don't know me. When it's family and friends looking at me in a funny way, it hurts more than I could have imagined. Watching them walk away in disbelief is even worse.

Like everything else, I have shrugged it off and moved on. A huge second family is at my fingertips night and day on the internet. I have talked to a few of them on the phone who have become like sisters to me. The ones I've only met online are no less important, and all of them are the rocks I feel under me when I really need it.

CRPS does not rule me, I rule it. I endure whatever I have to, because giving up is not an option. Each day is an adventure, with new worlds to explore. I take it one hour, one minute, one second at a time supported by the people who love me because of who I am, RSD and all.

Today

My companion did a little more settling in over the last couple of years. It decided its house needed expanding, taking over the acreage that is my back, and the right half of my face. The fingers of misery even reach out to touch my bladder every few months for which I am grateful. What? Grateful it's affecting me inside? Yes, because the burning and pain don't happen every day.

One lesson everyone should take to heart, whether you are free of diseases and chronic conditions or not, is don't take anything for granted. Wake up each day thankful for the ability to breathe, move and feel even if that feeling is pain, I know I am.