Wearing orange and burning for a cure to CRPS

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Many people suffer without others being aware, especially in the case of an invisible, chronic illness. People like myself can look perfectly normal and still be suffering. That is why I feel the month of November being Complex Regional Pain Syndrome Awareness Month should come more into the public eye.

According to the Mayo Clinic definition, “CRPS typically develops after an injury, surgery, stroke or heart attack, but the pain is out of proportion to the severity of the initial injury.”

The pain in my own experience was so severe I was unaware I had fractured my foot. When I found out, my doctor informed me it had already healed itself.

This is an important topic for me to share because I have suffered with this illness for seven years now along with fibromyalgia, which is a disease described as widespread muscle pain and weakness. I understand many people, even doctors, are not fully aware of this illness and its full effect on peoples’ everyday lives. 

CRPS has been recognized as an illness since the Civil War, but it still does not have a cure. Additionally, it still takes a certain doctor to diagnose because not enough doctors know enough about CRPS to be able to give a patient a diagnosis. In my own case, it took five months for a definite diagnosis, being called a hypochondriac, and around seven different doctors before I was told I had fibromyalgia and CRPS. 

CRPS presents itself in multiple ways in a person’s limbs. Some way it shows is inflammation, redness, hot to the touch and sometimes blisters. Other times it causes numbness with purple discoloration and an intensified pins and needles sensation. 

However, these opposing symptoms rarely occur together.

This illness can take a lot out of a person, even to the point where it is one of the diseases nicknamed “the suicide disease.” This is another reason people should be more aware of this illness because even on good days victims of this illness may seem fine but are still in pain, workable pain though. It’s like when someone has a migraine that won’t go away, but they continue with their day and push through their pain.

Other people with this illness have taught me to keep pushing forward even on your darkest days because there are things to look forward to. For example, this past summer my doctors finally offered my family and me a treatment program at Ochsner Baptist Medical Center. Since then, I have been better. I can now take a full course load of classes. I now have a job and have started doing things more independently. 

However, even though I have found something that works for me, many people younger and older than myself have not found a treatment that works for them. That is why I feel more people in our community should know what this disease is. Even though I found a treatment, there is no official cure for CRPS. During the month of November, I hope more people will be wearing orange for CRPS awareness.