Written by Natalie Mosley Klenotic for the RSDSA blog.
My son developed CRPS as an 11 year old when another child knocked him down at school. The unbearable pain was nearly instant. He thought that he’d somehow broken a bone in his foot. By the time dinner rolled around, he had removed his sock and shoe. As he began homework after dinner, he casually sat with his legs crossed, bumping his foot and the pain increased tenfold.
My son, Gage Klenotic, suffered with CRPS for 3 1/2 years. It was nearly a solid year before a physician diagnosed him. Daily life had us searching for an answer. Our podiatrist knew what Gage had and I knew what Gage had, because sadly I had a friend online, whose little girl suffered with CRPS, but no one else would diagnose him with CRPS.
I began researching all about CRPS. Life during that first year was hellish. I wanted to help my son, so we went to a dozen neurologists, pain physicians and doctors. Luckily, one prescribed physical therapy, so he began it in the hopes of something changing his pain. He completed physical therapy with zero pain medication for six months. Navigating an invisible illness with physicians calling your son a liar was unbelievably difficult during the first months of CRPS and it hurt our whole family. Those 3 1/2 years were traumatic and PTSD-causing.
I advocate and attempt to educate anyone who does not understand illness that can’t always be seen. Invisible Illness is not any less painful than an illness that can be seen with the naked eye.
To anyone who is the caregiver for someone with CRPS, it is hugely important to listen, support, and help the CRPS patient feel safe and comfortable as they share their painful journey with you. And to anyone newly diagnosed, this community believes you. There is hope. There is hope for you to get better. There is hope to live with it and find a new path.
To anyone living with CRPS, you are an inspiration! I applaud you and anything you insightfully share is appreciated.
My son found assistance through fludiotherapy. It is a warm sensation created with ground up corn husks being blown around the CRPS appendage. It didn’t cure it, but it was a pleasant sensation. Gage also had capsaicin cream used on his foot while he was under anesthesia. This cream is made from the hottest peppers and it burnt off his nerve endings and helped to reboot his nerves. It took months of recovery, but later he began to experience less pain when he coupled this with mental distractions via his psychiatrist.
Thank you for this opportunity to advocate. I wrote about my son’s CRPS journey in a children’s book and an adult companion book. The children’s book is being given to newly diagnosed children by my son’s former pain physicians at the children’s hospital. I have also been interviewed on a podcast, because I want CRPS to be better understood. The CRPS community needs more information shared about them. A cure needs to be found.
You can contact Natalie via Nataliemosleyklenoticbooks.com and [email protected].
