Flip flop flip flop, you can hear me coming down the hall to the doctor’s office. It doesn’t matter if it’s 98 degrees in mid August or 20 degrees in February. Four years ago it would’ve been the click clack of high heel on my way to work, or out for an evening of socializing or dancing. That was my old life, a life without reflex sympathetic dystrophy (RSD)/complex regional pain syndrome (CRPS). My name is Tracie and I have CRPS.
November is CRPS awareness month, and I would like to let you know what it’s like to have this horrific disease. While living with this every day for the past four years I have met many other people with this disease. All in various stages and degrees of it and in different areas of their bodies, yet with all those things being different, there are things that are the same. First what you need to know is this is incurable. There are therapies and medications, etc, to help reduce some of the pain, but nothing to stop it. So wrap your mind around what I’m going to tell you. This is every minute, every hour, every day for the rest of my life.
To see me you’d think I was fine; it’s what you don’t see. My foot and lower leg feel as though it is being squeezed in a vice grip, as hot pokers are being jabbed into me and lightning bolts shoot through my leg at any given moment all day long. When I step it’s like stepping on broken glass. Then there’s the feeling of the fire. It is as if gasoline was put on my leg and set on fire, never to be put out. Then there is the outside sensitivity, the lightest touch, a gentle breeze, a pair of pants, or a pair of shoes, (hence the flip flops in winter) can feel like acid falling on your skin. My leg will, without any reason, get swollen and purple. That’s why you would find me, most of the day, either sitting with my leg propped up or looking for a place to sit and rest. I have to conscious of the weather before stepping out. A stiff wind across my foot can drop me to my knees. Then there’s noise and vibrations. See CRPS affect s the nervous system so any “loud” noise sets the pain off. Let me give you two examples. This past week my husband and I went to Cirque du Soleil, but the sound and vibrations from the show had me in bed for three days afterwards in pain and tears for hours at a time. My second example is from this past summer. My family and I were floating in the lake. I had my leg off the raft dangling in the water. Our neighbors turned the radio on their wake board boat and I felt the vibration through the water come to my leg like a hot spear. That had me in bed screaming for two days.
This is my life with RSD/CRPS. I am 51, a wife and a mother. Living with this disease is painful…. constantly. As you look at me and see me smile, it’s not because I’m not in pain, it’s just that I’ve gotten better at hiding my pain. I am very lucky to have found a wonderful doctor, Dr. Ung. He has been my saving grace. I wonder how my life would have been different if I had been treated by him early on in my disease as this would have given me the best chance to have been “cured.” He has helped to make it so I have some quality of life, and just to have a doctor who understands the dynamics of this disease and to have the compassion and empathy makes such a difference. I have learned I still can do some things, I still have to have a life, and I just have recovery days. I have a life, it’s just different. I want to say I am a survivor, but I can’t since there is no cure. What I can say is: I am and will continue to be a Warrior…every hour every day for the rest of my life.
written by: Tracie Ragone