The following opinion piece was submitted to us following a Saturday Night Live skit that made fun of CRPS.

I Have "The Crazies"
By Kathleen Burkinshaw

Recently, a Saturday Night Live news skit joked that Paula Abdul's antics of late were linked with her recent statement of "having Complex Regional Pain Syndrome (CRPS)-also known as the Crazies".

My first reaction was to cringe when I heard the punch line, but the more I thought about it I realized that the skit was not about people with CRPS, it was about lampooning Ms. Abdul, who announced that her erratic behavior was caused by the chronic pain of Reflex Sympathetic Dystrophy (RSD) also known as Complex Regional Pain Syndrome.

You see, for the past four years I have been battling a stabbing, burning pain that started in my left leg, spread to both my hands, and most recently to my right foot. Trying to find out what I had and researching what exactly could be done to treat it nearly did drive me crazy. My primary care physician identified this debilitating pain that consumes me as CRPS, a devastating neurological chronic pain syndrome that may affect more than one million people in the United States.

At least I knew it had a name. Unfortunately, it was a name that my family and I had never heard, and neither had some of my physicians. The burning pain can be so unbearable that it will wake me from my sleep. The nerve endings in my skin are so sensitive that a sheet brushing against my leg or my 8-year-old daughter taking hold of my hand will cause me to flinch in agony. I cannot have air conditioning no matter how hot the temperature outside because the cold breeze causes pain. The burning pain in my left leg, right foot, and now my hands can be best described as having scalding water constantly poured over the affected limbs. Four years ago, I had to use a walker, and through persistent and painful physical therapy was able to go to a cane, which is what I currently use. However, now that the pain is in my hands there are many days that I cannot even hold the cane and I fear a wheelchair is in my immediate future if I cannot find a way to battle this new attack.

Suddenly, a world where I had a successful career in the health care field as a Director of Contract Negotiations with Managed Care, hospital, and affordable assisted living entities; and being actively involved with my family and friends was taken from me. This unrelenting pain has stopped me in my tracks and taken me captive. I find myself trying to explain to people why, for example, I cannot go out tonight because today I chose to take my daughter to school. Pain drains my energy. If I volunteer at my daughter's classroom for one hour, I then am imprisoned to the couch for the rest of the day and the following day. If I choose to go grocery shopping for a few items, then dinner has to be soup because I cannot do anything else. It is constantly having to choose between one or two activities that for many is routine and accepting that then your day is over there is no possibility of "just one more thing".

The other piece of this is that when people see me, they see the cane and my limp, but for the most part I may look fine. They do not know that I am smiling to hide the pain. They may not realize that even though this afternoon I picked my daughter up from school because I could push through the pain at that moment, the very next day I am not able to get out of bed to make her breakfast and pack her lunch.

In addition to the unrelenting pain, CRPS also affects the limbic system - a complex set of structures in your brain that control emotions and memory function. Therefore, I need to write EVERYTHING down or I will forget to do the simplest of things. It is tough for other people to realize that they may have mentioned something to me in the morning, but I may not remember it when they see me later in the day. I forget to meet people somewhere and only when they call to find out where I am, I am reminded. This is not a once in a while happening when you are stressed, this is a daily occurrence.

Currently, I am unable to continue with my career and my husband is thrown into having the responsibility of being two parents at times. My daughter has had to learn that mommy can't always do things with her because many days I am stuck in bed because the pain is too great and because I cannot bear for her to see my tears.

So if having CRPS is a new definition for crazy, then I choose to equate it to working like crazy to research various treatments, pushing myself like crazy to do the physical therapy exercises no matter how much pain it causes so the limb won't atrophy, and advocating like crazy so people can recognize the symptoms of CRPS. Ironically and sadly, people with CRPS are sometimes told they are crazy, that the pain is "all in our head". I am writing this to let people know that the disease is real, and the pain all too real.