Drea’s CRPS Journey
Written by Drea Tunstall-Dooley for the RSDSA blog.
In 2007, I was 40-years-old when my life was permanently changed. I was going to get medicine for my friend who could not go outside because of her health. As I was crossing the street, I got hit by a car and ultimately broke my tibia and fibula in my left leg. Had I knew that I would never be the same again, I probably would have opted against surgery.
I had a rod and for pins placed in my leg, and things seemed to be progressing at a normal rate until I suddenly started going backwards with my pain. Living in New York and being on Medicaid, I do not feel the doctor really cared about my health. I would tell him that I was in pain and he would say, “You should not be hurting like this,” and give me Tylenol. He believes I only wanted pain pills, but that was far from the truth. I just wanted somebody to help me. A few years later, I married my husband and moved to Maryland. He took me to pain management doctors in 2012 and the doctor said I had complex regional pain syndrome. Even though I did not know what that was, I was just relieved to have a diagnosis and not feel crazy anymore.
The doctor said I will never get better, but did not say I would get worse.
Today I have learned to live with daily pain. A normal day for me is meds, meds, and more meds. I have pain meds to get me through the day, and Gralize to help control the CRPS. When I wake up, I try to do as much as I can before I start swelling, hurting, and my ankle starts changing color. Before my injury, I was a super active person, performed ballet, and loved walking. I walked everywhere. Now, I dread doing anything, but I cannot just sit still.
I know if I walk too much, even with my cane, I will still hurt. My leg hurts if it rains, and if it is cold outside, it gets cold quicker then the rest of my body. I cannot stand still for a long time, and I am very restless at night, so many times I find myself sleeping during the day. I have had injections to help with the pain and I try to relax when I can. I have four of the best encouragers outside of my husband and, thankfully, he is so understanding. My best pain relief (do not laugh!), but my Marty knows when I hurt and he ever so gently massages my ankle with warm licks.
I still love to walk, and I try to take my furbabies for a walk daily. Because I hurt so much, I stay to myself a lot and watch TV with my legs up. I have many sleepless nights due to pain. I have what I call my barometer in my leg, as I can tell anyone when it is going to storm.
I wish that people understood that just because I may look like I am fine, I am not. I wish they knew what I did to be able to do what is easy to them, like walk up the steps or walking from the parking lot to the building. I wish they would realize how much we lose with this diagnosis. I wanted to do competitive body building, but cannot because I cannot train my legs because of pain. I can no longer dance, run or walk. Ultimately, I miss life before CRPS. I also wish non-CRPS Warriors would stop making mean comments. I would not wish one day in my life on my worst enemy
To the new Warriors, find one thing that makes you happy and do it. If you have that one person in your life that loves you regardless, appreciate them.
If you are a veteran Warrior, know that I love you and that you are a champion in my book. You are not broken. Know that you are not alone as us Warriors are in this battle together.
To end, I want to thank my husband Mark for loving me when I thought I was broken and unloveable and when I cry for miss being pain free. I also want to thank my furbabies for being there for me when I am in pain.
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Drea, I am a veteran warrior I was diagnosed in 1994. It started in my right shoulder March 1994, I injured it in a car accident in 1977. I was diagnosed in July that same year and it moved a few months later into my legs. It progressed quickly and now my whole body is affected. Just as with you I deal daily with pain and the sleepless nights. Thanks for sharing your story it helps to be reminded that I am not alone.I am sorry that you have this dreaded but glad you have your husbands support. Thanks again for sharing your story.