In 2000, when I was 13 years old, I was running pre-season for cross country…my FIRST year in high school!!! During a practice, I twisted my ankle, but finished the practice before finding the athletic trainer and talking with him. He told me to get an x-ray and stay off of it for a week before trying to run again.
The x-ray came back negative and I began high school on crutches, just as I was told. A week later, the pain was worse, NOT better. I went through a series of MRIs, more x-rays, bone scans, etc. Nothing was coming back with any reason as to why I was in pain. I now felt as though I was on fire, my foot was swollen, and quite discolored.
After about 3 months, my pediatrician ran out of ideas and sent me to a pediatric orthopedic about an hour away. After talking with me, my mom, and looking at my foot for about 5 minutes, he diagnosed me: Reflex Sympathetic Dystrophy. That’s quite a mouthful of jumbled words with ZERO meaning for someone so young. He explained it to me that, yes, I was initially hurt and feeling pain as I should have after twisting my ankle. However, once my ankle healed, my brain was still sending pain signals to my foot, telling me that I was still hurting.
I started seeing a neurologist who had just moved into the state. He had experience working with adults with RSD and was interested to take on a pediatric. I went through months of med changes, epidurals, more meds. I remember VERY little of my freshman year due to the medication I was on. At one point, I was even using morphine lollipops! My mom, being a teacher, worked with the school to get the accommodations that I needed, including more time to finish assignments and taking exams at home with my mom sitting there with me to make sure I didn’t cheat. I would only be in school a couple of hours a day, for only a couple days a week. I was taken out of school to do water therapy as it was only offered during the school day.
I was sent to Boston Children’s Hospital for a week-long epidural treatment/program. Once the epidural was implanted, I walked with a PT for the first time in MONTHS. I even walked on a treadmill for .5 miles! I was EXHAUSTED after each walk, as I had lost so much muscle mass in my left leg, that I was very weak. However, towards the end of the week, the epidural shifted in my back, and the medication no longer was being sent to my leg. The RSD pains came back full-force. I had been hoping to walk out of that hospital, but instead, I was wheeled out to the car in a hospital wheelchair.
After that, my neurologist told me that the only way I would be able to walk or run again, was to just do it. I began this journey of walking again by standing with my crutches, and just touching my foot to the ground (not even any weight on it), for 10 seconds a day. Then I would put a little weight on it, then I got to the point where I could walk with crutches for a few minutes at a time. It was the most grueling of tasks, but by the end of my freshman year of high school, I was walking again, WITHOUT crutches!
By my junior year, my doctors all agreed that I could try running again. My senior year I ran on my xc team, and finished second for my team at States, and then ran the junior olympics out to New Mexico for Nationals! In college my sophomore year, my friends and I completed a half marathon! I would send my neurologist photos of each race to show him how awesome I was doing!
While training for another half marathon the following Fall, I was doing a fieldwork for a class, and a powered wheelchair ran over my RSD foot and stopped on it. Within 5 hours, I knew that I had relapsed due to the burning pain and sheer agony that I was in. My neurologist took me in the following week, and decided to do sympathetic blocks. Over a few weeks, I had two. With a change in pain meds, combined with the injections, I was back in remission by the time second semester started that year.
I graduated from UNH in 2008 in fantastic health. I got a job working in my field, and was making great new friends, and starting my life! In 2010 I started grad school for OT. This past summer, July 2011, I relapsed again, seemingly out of nowhere! The RSD has quickly spread up to my knee, and I am on a cocktail of medication. My night stand looks like a pharmacy! I have had to make the tough decision to take this Fall semester off from school to focus on my health. I struggled with this decision for a couple of weeks, but my school advisor reminded me: ”you can’t help other people until you help yourself.” Her words are staying with me this week, as classes have begun, and I’ve been home trying to get better, going to PT appointments, and getting my medications changed, yet again!
I’m hopeful that the new treatments that will be starting in the next couple of months will help put me back in remission. Until then, I will keep repeating her words to myself. I can’t be an effective OT if my health is terrible as well. This is the time for me to be selfish, and focus on ME and MY recovery. I think that following those words will help me to become a better OT in the future! Now is the time to help MYSELF, so I can make other people feel better.
It is a fight and a struggle every single day, to walk on a leg that feels as though it is on fire. It is a fight to focus on the end goal, through the haze of my medications. But I’m doing it. I’m fighting RSD back. This monster won’t win against me…I will go into remission again!
(Photo: DANCING down the aisle 9/3/11 in my friends’ wedding. I was in a TON of pain, but it was worth it to be able to celebrate the love of my friends!)
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
My advice to you would be to have more blocks and keep having PT when you feel it’s needed. Don’t have a SCS, from what I have seen, they cause spread.
Sorry that you are going through this at such a young age.
I took Methadone for 6 years straight for my RSD and it helped at a very low dosage but I am now off of it due to a great Dr. that is persistant and worked on getting my pain level down so I could go off of it.
Good luck to you.
Hang in there girl, you just keep on getting back up! You are an inspiration! Fighters like you are the champs that urge us to continue to work for a cure. God Bless and keep posting.
I wrote some of my story back,but I lost it when my computer lost the internet. Well, I wanted to let you know that I also was an XC runner in HS and college as well as track. I ran the 800m and relays in track mostly and then XC. I also ran XC in collge at villanova University. did you go to NC state?? my ex sister in law did and was on full scholarship for xc and track. she was one of their top runners for most of when she was there in the mid to late 8o’s, Janet Smith. You will have to look her up in Athletics and records. Well, anyway, I was lucky to be able to run in Hs, though did get stress fracturs and knee injuries. But, then I ran in college and got a teaching job and then also got a job as the head Woman’s Xc coach at Lehigh University at age 24 years old. I was so lucky and loved that job. I ran with the atheletes and still ran come road races and wanted to some day run a marathon under 4 minutes at least. But, I got hurt after indoor track practice when I was going to leave, I got his by a men’s lacrosse ball cus they forgot to put down the safety nets before they took a shot at the goal. I got hit and got a traumatic brain injury and multiple nerve injuries that were not diagnosed for a long time, thus I got RSD or CRPS type 1 and 2 both. It took a lot of rehab and years because it took a long time to be able to get the right diagnosis and treatment. I see Dr. Robert Knobler now and he diagnosed me. I also see a great PT and other. I did get to go back to Lehigh and finish my doctoral program that I was in during the time that I got injured and had to slowly drop out as I got worse and soon drop out of teaching anc coaching too. It was sad,but I did work hard like you did and got to finish my grad school . YOur story inspired me cause you got hurt young and went back and got hurt again and went back to run Xc. You have given me the inspirtaion to know that I can run again and not get the RSD all flared up. ALso I Hope that my story will help you to know that you can get back and finish your grad school and get a job and also go to get a doctorate if you want to as well. We RSD’ers have to support each other. I did get hurt 5 days into my 29th birthday. ANd it took 11 years of rehab or wrong rehab and diagnosis and then right diagnosis and rehab to get back to where I am today. Hang in there and keep up the good work. I Know that RSDSA had me on the stories of hope. I am patti and I have a service dog Raven. They wrote in the newsletter about me and it was on line. Keep in touch. I have a support group in Allentown, Pa. we have a web site,but needs to be updated and an email for the group. http://www.lvrsd.com or firstname.lastname@example.org. I Hope that you can go to the NYC run for hope this summer. I hope that I can also. I did not go last year cause I had surgery and was recovering,but I went prior years and it was a great experience. take care, Patti and Raven doggie.
I apologize for not responding earlier!! Whenever I checked this page for new replies to my story, yours never came up! Wow! I’m glad I checked today though, because I finally got to read your inspiring story! Thank you for sharing! I am definitely hoping to be at the walk in NYC in June. Keep me posted on if you are going, so that we can try and find each other there! I love dogs, so please give Raven Doggie a big pet and hug for me! 🙂
Thank you for your positive messages, everyone! Some days it’s a struggle to get out of bed and put a smile on my face, but life is too depressing without smiling!
Ada, I’m actually starting ketamine next month doing outpatient infusions. Blocks, etc. that has worked in the past is not working this time around. After 12 years I think my body is “immune” to some of the meds I’m given. So next step is Ketamine. Hoping it will be my answer!
i have some questions if you could email me that would be nice.
my email is: email@example.com
Good for you! Keep strong, you’ve gotten through this two times before, you can do it again! I was diagnosed with RSD in my left arm when I was 20 (2 months before my 21st birthday) and have had it almost 6 yrs now and it’s taken over both arms. I’ve been through the ringer with dr’s and workman’s comp, but I honestly believe that RSD only picks on the strong people.
Thank you for sharing your journey through pain. It will help others to keep on fighting, including our daughter.
Good energy is sent from north part of Sweden!
I’m not sure if you’re going to get this but thought I would share anyway. My daughter was diagnosed with RSD when she was 12. After a lot of tests and misdiagnosises she was sent to Seattle Children’s Hospital. They have an RSD clinic there. She hadn’t walked in months and doctors up here in AK were talking about amputation because her foot and leg had turned purple and was continuing to climb up her leg. She did 5 hours a day of brutally painful physical therapy. One week later she was walking without crutches. 4 months later she was back to being pain free. It comes back every January and I start her on the PT immediately. It clears in a couple of weeks and doesn’t reach the original pain level. Forcing her to do the PT was the hardest thing I had ever done. Watching her stick it through was one of the bravest things I’ve ever seen. I hope you are able to find peace soon.
Where did you learn how to do the PT? My husband was doing PT at his hospital and he worsened. Even the therapist said that it wasn’t helping, and she was trained in CRPS! I would love to learn the therapy so that I can help my husband, but nobody in the State of Nebraska knows anything about CRPS, let alone know how to train others. I, myself, have given education to his medical team and have made the suggestions that prompted certain medications, treatments, etc. Any advice you could spare would be greatly appreciated!