By Beth Stillitano.
I am always trying to explain to people how CRPS feels. It is a very hard concept for people to grasp.
People who live with CRPS describe their pain as sharp, burning, stinging, stabbing, aching, and throbbing. I generally respond that I feel my body is on fire; as if someone has replaced my blood with ignited gasoline. I guess that is hard for non-CRPS suffers to imagine.
A few nights ago, I gave myself a pretty bad burn when I touched the oven rack pulling out dinner a 425-degree oven. My skin blistered immediately producing a lovely second-degree burn.
As the top of my skin heated up and continued to do so for a couple of hours, I realized – I can finally explain CRPS.
The horrible painful feeling you have for the short while on your skin after really burning yourself is what I feel every moment of every day inside my knee. My knee is always on fire. When I am in a pain flare-up, it is the equivalent of maybe breaking a bone at the same time; it is just added pain to what is already constant.
One of the biggest complaints, besides the pain, you will hear people with CRPS report is that is so hurtful and upsetting when others say “You look great. You are wearing makeup, jewelry, you must not be in pain today;” or “You are smiling, laughing and out with friends, your must be having a low or no pain day.” Or even worse, people may think that you have been lying about your pain levels.
What “healthy” people do not realize is that I have made a choice. No matter what I do, I am going to be in pain. I can crawl into bed and cry all day or go out and put on a smile and face the day as best as I can. Either way, I am still going to be in the same amount of pain.
Even on my highest pain flare days, I am sure to do two things: I get out of my pajamas, and put on something comfortable (lounge pants, sweats, etc.) and I will leave the bed and go to the couch. I force myself to do these things because it changes my frame of mind. I refuse to be a victim of this disease.
CRPS is the “suicide disease.” People are not meant to suffer in such extreme amounts of pain all day. Having support of family, friends, the medical community, and the general public is so crucial to our fight against this cruel disease.
I am sure it is hard to understand completely what we go through on a daily basis. Trust me, it is hell.
Beth Stillitano has been fighting CRPS for 20+ years. Her family established the annual Fight the Flame 5k to raise awareness and education about CRPS in Charlotte, NC.