Spotlight Story Program: Rachel’s Story

Meet Rachel Necky

As a rockstar athlete, teen Rachel Necky was ruling her life as an ice hockey player, but one injury would change her life direction. Dealing with the neurovascular condition called CRPS, Complex Regional Pain Syndrome, Rachel had to dig deep, find even more strength, and use her dedicated athlete mentality to fight back against her condition and realize that she could push herself and conquer all.

My name is Rachel Necky and this is my story: When I was little, I always noticed that simple things such as someone poking my arm and tickling me caused me pain. I didn’t understand it and didn’t really think much into it. In 2012, I fractured my fibula playing kickball in gym class. I went to the first orthopedist I could get an appointment with. They initially gave me a walking boot.

Unfortunately, that didn’t help because it was pushing on a very sensitive spot on the side of my leg–I call it my soft spot.

So, the doctor decided to take it off before I was fully healed, and they didn’t have me go to physical therapy. Once the boot was off, I started having very extreme, intense pain on my soft spot. The pain progressed and bounced over to the same spot on my other leg and continued switching back and forth. I went to another orthopedist and they told me I had shin splints.

The pain began to spread until it covered every inch of my body.

Some doctors told me I was crazy and others told me I faking to get attention. Nothing hurts more than people not believing you are in excruciating pain. This often makes the pain worse. Other symptoms came along and I knew it was related, I just didn’t have any diagnosis.

Some doctors told me to see certain specialists, yet those specialists refused to see me. It was a rough journey trying to find the right doctor that believed me. And after this long time, I found a pain management specialist that believed me and I was finally diagnosed. I have Amplified Musculoskeletal Pain Syndrome (AMPS) and Complex Regional Pain Syndrome (CRPS).

CRPS is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), usually after an injury or trauma to that limb.

CRPS is caused when there is damage to, or malfunction of, the peripheral and central nervous systems. My nerves send false pain signals to my brain.  It’s extremely painful and many doctors don’t know how to treat it. It’s at the top of the Magill Pain Scale (above childbirth and amputation). It’s chronic so I will probably have it my entire life, but it is possible to go into remission.

During the summer of 2015, I went on an Outward Bound two-week backpacking and rock climbing expedition which helped my pain levels go down.

I am thankful for my fellow CRPS friends who help keep me going. I don’t let this pain stop me and continue to push myself.

There isn’t much you can do about CRPS but intense exercise, which is very painful, can sometimes help with the symptoms. I am an ice hockey goalie on an all-boys team and I refuse to let the pain stop me from doing what I love.

People say I’m crazy to play in pain but I see it differently. Whether I play or not, I’ll still be in pain so why not do what I love.

When I was a young teen, especially when I was newly diagnosed, I didn’t really understand what my body was doing but as I got older, I got used to the crazy things AMPS and CRPS do to my body.

My advice to other kids in children’s hospitals to have a better experience in pediatric settings is to become friends with other kids with the same illnesses and diseases. They understand how you feel and can give you amazing advice.

Because of the great support from my friends that are also dealing with AMPS and CRPS, I am confident, courage, and stronger than ever.

I am active, I push myself, and I know I can do anything I put my mind to.