Today I am going to tell you about my journey with RSD (Reflex Sympathetic Dystrophy). RSD is a chronic pain condition that is a result of dysfunction in the central nervous system. The nerves affect blood vessels, skin, bone, nerves, and tissue. RSD changes the skin, muscles, joints, ligaments, and bones. RSD is caused by fracture, sprain, or surgery. Even an injury as small as a spider bite can cause RSD. RSD is the highest ranking on the McGill Pain Scale, worse than child birth and amputation of digit.
Some symptoms of RSD are: deep burning excruciating pain, swelling, increased sensitivity to touch, joint pain, color changes (red, blue, molted), temperature changes (hot/cold), skin texture changes (shiny, thin, sweaty). Motor system dysfunction symptoms include: Muscles spasms, tremors, reduced motion, and weakness. RSD can spread to a wider area including your whole body, anywhere where there are nerves.
In May 2010 I was at softball practice. I was playing 2nd base and my coach was the batter. My coach hit the ball to me and I went to catch it and, well, I caught it but the wrong way. It hit my left hand then I went to the ER and they thought that it was fractured. They made an appointment with Dr. Bowman at Hannibal Orthopedic Group. Two weeks later I went to my appointment and Dr. Bowman sent me to Physical Therapy. I went to therapy for about 6 sessions. I got better; my pain was between a 1 and 2. I was back to living a normal life.
In October I was practicing for volleyball. I had signed up for the volleyball team. I had been wearing a wrist brace on my wrist. I took my brace off and in the first 5 minutes I bumped the ball I suddenly felt stabbing unusual pain and my wrist was blue. I went to the ER and they said that it was strange and they didn’t know what was wrong. They sent me to Doctor Bowman. He said that it was RSD and so he gave me some pain meds and referred me to Physical Therapy. I went to First Choice Physical Therapy until the beginning of April 2011. Still in October, I got sent to some neurologists, pain management doctors in Columbia Mo who did two nerve blocks. The first one worked for 5 days. I was pain free. The second one did not work at all. Also I had x-rays, MRI’s, and a nerve condition study. I was sent to so many doctors. Around this time I met my inspiration, Jenna Terry. She also has RSD in both of her legs. She taught me some breathing techniques. She has been here for me ever since we met. I couldn’t do this without her.
On April 4th, I got released from my doctor in Columbia. I went into Remission! I was back to normal life. Then in September 2011 my RSD came back in my left wrist/arm and left shoulder spreading to my neck and back. In November I went to a doctor in Quincy. She did a lot of tests on my body. She said that she thought that it was RSD, but she wanted to make sure so she set me up with a appointment with a rheumatologist. They couldn’t get me in until Feb 15th. She also sent me back to physical therapy.
Between November and January, on a pain scale out of 10 my pain was a 7-9. I was depressed- just thought that God gave up on me and didn’t understand why God would give someone this horrible disease. Sometimes I would think that being dead would be better than living in so much pain every second for every day of my life. I didn’t want to go anywhere. I just laid in bed and cried. On January 22nd 2012 my RSD moved to my hip so now RSD had conquered my left wrist, arm, shoulder, neck, back, and hip. Therapy wasn’t responding. I was just getting worse. I couldn’t sleep. I was up crying at night. The pain was skyrocketing. Every time I would move it felt like I was getting stabbed with a knife over and over again. Also it felt like I got lighter fluid dumped all over me and lit with a match. What made my life even worse is that night I got about an hour of sleep and the next day I had sharp, burning, throbbing, stabbing pain in my left leg. I couldn’t walk right. I couldn’t bend my knee. I couldn’t wear my school uniform. My leg was freezing cold. That was a bad sign. My leg and foot were changing colors from purple to red to molted to blue. I can’t even explain how much pain I was in – maybe about 500 out of 10.
We called the doctor in Quincy who I was supposed to go to Feb 15th. They didn’t really care that my RSD was spreading. My mom called everywhere trying to get me in somewhere. She finally found a doctor in Monroe who would see me. We went up there and she did some nerve testing and said it was RSD. She put me on some meds and sent a referral to Mayo clinic in MN. This was on the 23rd of January. It takes up to 6 weeks to hear back from Mayo. So we stayed in town waiting to hear from them. On January 28th the doctor that we saw in Monroe called my mom and told us that we need to head up to Mayo ASAP. I kept getting worse and worse. So the next day we left.
We went up to the ER at Mayo in MN. We got there about 6:00 pm. They got me right in. I had 2 pediatric doctors come in and check me out. They did a lot of tests. They ordered x-rays to make sure I didn’t have anything else. They also ordered blood tests. All of these results came back good. They had a neurologist come in and do some tests. He said that it was definitely RSD. All of the doctors met and came up with a plan for me. They came back in with a plan for medication and on how I am going to get this pain manageable, and they set up appointments at the Mayo clinic for me to see Pediatric Neurologist and to meet with the people at the pain center.
I met with the Neurologist on January 31st. She set me up with some appointments with a pain group consisting of doctors of Physical Therapy, Occupational Therapy, and pain management doctors. She also ordered me to get an MRI of my brain to make sure that I don’t have anything wrong with my brain. That afternoon I had my MRI appointment. The next day I had my appointment with the teen PRC program with a Psychologist to see if I was bad enough to get into the program. They said I could get in and they wanted to get me in ASAP. The soonest I could get in is March 14th. It is an intensive 3 week outpatient program from 8am-5pm providing multidisciplinary rehabilitative therapy to adolescents with chronic pain and their families. The primary goal of the PPRC is to improve quality of life and facilitate a return to regular daily activities for adolescents experiencing chronic pain. The program essentially focuses on helping teens and parents learn aspects of their pain and life they can control when a cure for the pain is not possible. After that, we went back to the neurologist to get the results from the MRI. The results came back and nothing was wrong with my brain. The next day, we had our appointment with a group of pain doctors. They did nerve tests and I met with a psychologist to see if I was depressed and I was. Later that day, I had occupational therapy. The next day, I had physical therapy. I had two physical therapists. We worked on function and desensitization with dry beans, feathers, wash cloths, silk ties, and cotton balls. We tried doing a TENS unit trial. It helped the pain a little bit. For the next week, I had physical therapy 2 times a day. They got me almost walking flat footed. I still have to do therapy twice a day, every day. I came home February 8, 2012. I went up in a wheelchair and came home walking.
Having this incurable pain disease has made me depressed. I was watching my life fall apart before I went to Mayo. I lie awake at night because the pain is just too much to sleep. I can no longer do the things I love. I cannot wear the clothes or shoes that I used to. I can’t focus at school. The slightest breeze and touch feels like sandpaper rubbing your skin raw. When you shave it feels like your skin is getting ran over by a lawn mower. I take 11 pills a day, 77 pills a week, 308 pills a month. I didn’t understand why God would give anyone RSD, and especially a 15 year old girl. Then I remember that I once read 1 Corinthians 10:13 and it says, “God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it”. God says “You are never alone. I am always here… By your side I’ll share your pain and dry your every tear we’ll look to the future ahead, a future filled hope and love and Joy that has no end.” So for now I am going to live each day fighting this horrible disease the best I can, knowing that better days are going to come and I may not understand why I have this but God does and He knew that I was strong enough to handle it!
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.