Shining the (Orange) Light on Complex Regional Pain Syndrome

This is something I’ve never really shared, usually because I wear pants year round or I’m in my brace or boot covering up my entire right leg because I’m too embarrassed with how it looks. I typically jokingly refer to my complex regional pain syndrome (CRPS)-affected leg as my “dead leg” or “zombie leg,” for its very… lifeless appearance.

CRPS (formerly known as reflex sympathy dystrophy, or RSD) is a rare disease very few have ever heard of. Whether you are newly diagnosed, or a family member, friend, or loved one was recently diagnosed, I hope I can help by shining the light in the area of this largely misunderstood disease.

Complex regional pain syndrome is when your nervous system never stops sending pain signals to your brain. Your nervous system works by pain signals being sent from your brain, down your spinal cord, and out to the source of pain. With CRPS/RSD that injury, surgery, (shattered talus, in my case), etc., may be healed, yet due to an abnormal reflex developed in your spinal cord, the signals may get caught up and never stop sending pain signals, leaving your nervous system hyperactive. Overall, CRPS is a malfunction of one’s nervous system.

This leaves us with a painful, constant burning, cutting, tingling, stabbing, and throbbing sensation every day. On top of pain, we are faced with several side effects that can consist but are not limited to: temperature and color changes of the affected limb, headaches, fatigue, nausea, sensitivity to touch, involuntary muscle movements, lack of mobility, inability to walk, depression, stiffness, insomnia, anxiety, etc.

There is no cure.

Because of this, it also referred to as the “suicide disease.” The constant burning, swelling, ice cold, hypersensitive, ongoing pain is just too much. Amputation is an option for few, although even with that there is a risk the CRPS will spread elsewhere throughout the body. Having CRPS/RSD really proves to me that sometimes the best thing I can do for myself is make the best out of the life I was given to live.

We are fighters. We are warriors. It’s my reality and my norm. I try to live my life as much as I can, while I can. In some CRPS cases, the disease will spread throughout the body and into other limbs, eventually making many people immobile. Nothing is proven and guaranteed to help the excruciating pain or the spreading. The pain does not respond to many medications, even things such as morphine. There are some treatments available, but many are not covered by insurance and have several serious side effects. Many doctors are not even aware and educated on what CRPS/RSD actually is.

It was very difficult having a baby this past July (2016), and not a single doctor in the delivery room had ever even heard of my condition. It was a real double whammy trying to deal with the labor pains on top of the pain and complications I was experiencing with the CRPS, and nobody was able to help me. Due to lack of knowledge with this disease in many healthcare professionals, this leaves patients with no hope and no options.

Not only does this disease have an impact on your limbs, but you can also develop major compilations from CRPS going internal. Complications can include but are not limited to: destroying the immune system, destroying internal organs, disturbing the function of the brain, shutting down the kidneys, causing cardiovascular issues, and it even eats away the bones and can eventually cause you to lose your mobility.

If you want to help show your support, November is now referred to as CRPS Awareness Month. Whether it’s for yourself or a loved one, please wear orange to help bring some awareness to CRPS. Help us color the world orange. Help us honor those who lost their lives to this battle. Help give the rest of us a little hope.

The color orange now has an entirely new meaning to me, and since my diagnosis, it has become my color of hope and I wear it often.

We all want to continue to fight for our lives and have some kind of hope for a cure, but when your treatment eventually fails and your medicine eventually fails, the only choice we have left is to stay strong and band together and mourn the loss of every fellow warrior who has passed. We are all a family connected together by one of the most painful pain diseases known to medical science today (on the McGill Pain Index, it scores a 42 out of a possible 50). Most of us go from totally normal, healthy lives to debilitating, secluded lives because of the pain and complications. Sometimes, each other is really the only hope we have.

Fellow warriors: the most important thing to keep in mind while fighting this disease is that even though we may have our disabilities, we certainly have our abilities too. And for us to shine so brightly, the darkness must be present first.

Fight on, warriors. Keep shining.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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