Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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PERSONAL CRPS/RSD STORY

2020-03-13

PERSONAL CRPS/RSD STORY

 

As you know we give you someone’s personal CRPS/RSD and chronic pain story, showing you how other sufferers around the world deal with their condition as everyone approaches and copes with chronic pain and CRPS/RSD in a different way. For this month’s personal CRPS/RSD story it has come from a young lady who lives in the USA; Samantha Reeb.

Personal CRPS/RSD Story - My Story

Personal CRPS/RSD Story – My Story

Thank you Samantha for allowing Burning Nights to share your personal CRPS/RSD journey with other sufferers. This is what Samantha has written:

 

Hello, this is Samantha Reeb.  I would like to share my story with you. I’m from the USA I live in Ohio and I am a college student at Ohio university. So here’s my story: 

 I graduated from high school in 2013. I was a very big sports person.  I played volleyball for many many years, I ran track, I was a hip hop dancer. I loved being active. One night this all changed in the blink of an eye. Myself and seven of my good friends from high school decided to pile into this handicapped van that my friends dad had and go to the clubs in Columbus Ohio. There were not enough seats for everyone, so three people had to sit on the floor. I was one of them. We made it about half way there. We were stopped at a red light on the highway 315. We were the first car at the intersection in our lane. An older man approached behind us at the red light, but apparently he didn’t feel the need to stop his car. He rear ended us going 60 mph. No one in the back seats had their seatbelts on. So my friend who was sitting next to me on the floor was shoved into me, causing her to break her arm on my left knee. We were hit so hard all of the windows shattered all over us.
When I finally realized we had been in an accident, I opened my eyes to see myself and all of my best friends soaking in a blood bath. There was screaming and crying and people trying to get out of the car. I just sat there silently in shock. I had no idea what to do. My parents didn’t even know I was out that night. Everyone crawled out of the windows because the doors would not open. When I finally took a step back into reality for a minute, I realized I needed to get out of the car before it exploded with me in it. It was at that moment I realized I couldn’t walk and I was severely injured. I had no choice though, I had to get out of the car. So I crawled out of the car too. I some how lost my shoes in the accident, so I was crawling on the road with bare feet through piles of glass.
We all went to the emergency room. For a while no-one could tell what was wrong with me. I was in severe pain all of the time but the x-rays, MRIs, and EMGs came back normal. My first doctor told me I was making the entire thing up and I needed to “get off my ass and walk.” I was in so much pain I could hardly walk, I was using a brace and crutches to get around. I finally found Dr. Cayce. He is the doctor who diagnosed me with RSD/CRPS. No-one in my family had heard of this before. As he explained it to me I slipped into shock. I thought to myself “I’m only 18, I just started college, how can this be happening to me? I’m too young.” No-one in my family and none of my friends understood the severity of this disease. So I was alone. I was in excruciating pain all of the time, but no-one understood it. They all thought I was being dramatic. It wasn’t until I started treatment that my parents really researched it and understood how badly people with this condition suffer.
Dr. Cayce put me on numerous medicines and scheduled me for my first round of spinal injections. I was going to have five of them done over the course of a about a month and a half. I went through this painful and uncomfortable treatment, spent thousands of dollars, just to have it not work in the end. I felt very discouraged at this point. Was there any hope left for me? After the injections didn’t work I began seeing another doctor (as well as Dr. Cayce) from the Cleveland clinic. I was constantly driving back and fourth from where I go to school in Athens, Ohio, to Cleveland. This is a lot of time consumption for a college student with lots of homework. They decided at the Cleveland clinic that I would try one last spinal injection with them, and if it did not work I would have a beir block done. The injection failed again. Putting me into an even further depression.
I came back a couple of weeks later to try the bier block. This is a procedure where they cut off the circulation in the effected limb and try to block the nerves from the other end. This was an unbelievably painful treatment. Of course, yet again, I was left in disappointment. It didn’t work. What was I going to do? I had no idea. I fell into a very deep depression. I stopped going to class and doing my homework. My grades suffered greatly. My parents wanted to pull me out of school because they didn’t know how depressed I was and they thought I was just partying all of the time and not going to class. I convinced them to give me one more chance. At my next appointment with the Cleveland clinic I was referred to a pain clinic at the children’s hospital for rehabilitation.
Over my winter break this year, I spent three weeks in the inpatient pain treatment. It was great! They taught me how to walk again, they taught me so much. This clinic is not to take your pain away. It is to learn how to live with it. I spent time with physical therapists, occupational therapists, pool therapisits, psychologists, all kinds of people. It was very intense and very hard and painful. But I did it. I learned how to walk again. It was such a great feeling! It gave me so much more confidence. Even though I was stuck with this horrible pain for the rest of my life, I put in so much hard work, and I finally got something back. At that point I realized something, I could either live the rest of my life feeling sorry for myself, or I could live the rest of my life. So that is what I chose to do.
It has made me much happier. There are still moments where I have to let myself cry, and moments where I get very angry at the whole situation. It’s good to let those feelings out sometimes though. I’m 19 years old now, almost 20, it has been almost two years since my accident and living with this god awful pain. I still have many fears. I fear I will never find someone who wants to marry a disabled person like me, I fear it will spread and I will not be able to have kids of my own some day because of the pain. I fear the pain will keep me from getting my dream job and living my dream life.
But, you know what? I’m stronger now than I have ever been before. Most people wouldn’t last ten (10) minutes in the shoes of someone who feels the pain we do. We live everyday with more pain than a cancer patient, or a woman giving labor, or someone getting an amputation. Take your anger and sadness and use it as motivation. You’re stronger than so many people. I think about this every single day. It motivates me, it keeps me going. Although I may never be the same person I was when I graduated high school, I’ve learned to accept who I’ve become. I will never stop being a fighter.

Samantha Reeb

Personal CRPS RSD Story - You are stronger than you think

Personal CRPS RSD Story – You are stronger than you think

Thank you so much Samantha for writing your personal CRPS/RSD story for other sufferers and you have shown that it is possible to live with CRPS/RSD and chronic pain while still living your life. I am sure you will find someone who will love you for who you are and not because of your disability. One day you will find love and it will happen when you are least expecting it. Please feel free to comment, post, share Samantha’s personal CRPS/RSD story.

 

Written/Updated: 08/04/2015

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About the Author
As the Founder of Burning Nights CRPS Support, I want to help all those affected by this devastating condition which includes those living with CRPS, their relatives, partners, carers and friends. I'm also barrister, advocate & have lived with Complex Regional Pain Syndrome (CRPS) since 2003. I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Scott wood

    Samantha first off let me say you sound like an awesome person. My daughter to was a dancer and athletic like you before she got diagnosed with crops, and we too went to the Cleveland clinic, then to the University of Michigan to seek help. The doctors all did there best, but couldn’t help her. Me and my wife couldn’t just sit around watching our baby suffer, so we started a long journey down south chasing hope trying to find help for our daughter. We went to doctors in Arkansas and North Carolina, then back to Arkansas. The doctors were very compassionate, but still no help the crps actually got worst. Then someone told us about a doctor in Texas that had this machine that would help the crps, so we headed to Texas where we met the doctor that took the pain completely away. His name is Dr. Rhodes, and he invented this machine called a vecttor machine. The pain didn’t instantly go away, but after less than a month of treatments on the vecttor she was 100% pain free, and has been for 6 months now with only 1 tiny flare up that the machine took care of. Please look into this machine. I will tell you now that treatments are none painful but time consuming. You have to dedicate 1 and half hours twice a day.. Which isn’t a lot in the long run. Now for the part that is the hardest for most people. The machine alone is $5000, and for the best results you would have to go to Texas for a week, so that the Dr could figure out the right way to approach your case. I hope you read this and research the vecttor. I can’t stand to hear about kids suffering everyday. P.S. keep the hope.

    • Samantha Reeb

      Thank you so much for your kind words, Scott. I greatly appreciate it. I will absolutely look into this machine. I have never heard of such a thing. I actually stopped treatment about a year ago and have just been living with the pain ever since. However, I haven’t completely lost hope. Your post actually restored a little bit of hope inside of me.

  2. Dorne Connolly

    You are a very courageous young woman to face your situation head on. Acceptance is a very hard thing to do. Don’t stop trying everything offered to you to help you on a daily basis to deal with your pain. Your positive attitude and personal motivation is inspirational. Keep your chin up and keep smiling

  3. Christine

    I so admire your fortitude spirit and tenacity Samantha. Yes you will find someone who will love you for who you are and take onboard your CRPS. You will succeed at all you do. I am pleased that your parents too have now realised what you have been suffering. CRPS is a dreadful disease that needs to get more publicity.
    Take care and I wish you well for the future. I hope you come back on the site and let us know how you are getting on.
    From a mum with a daughter who has CRPS

  4. Samantha Reeb

    I didn’t mention this in the story, but i figured I would throw it in the comments for the other RSD patients so they can maybe try this too. At the same time I was getting all of this treatment done, I was also engaging in physical therapy, acupuncture, massage therapy, and psychology. The physical therapy was nice because it gave me a small chance to be active, the acupuncture did not work for me at all. The massage therapy did not work for my leg, but it did help me work out some knots in my back which was nice. My psychologist had diagnosed me with PTSD and depression, I worked with her for months and months and found it to be very helpful. I felt I should put this out there just in case any one needed some more ideas of what to try, even though it didn’t help my over all condition, that doesn’t mean it can’t help someone else.

  5. Maria

    I’m so proud of Sam. I’ve known her for a long time, and I was in that van with her on that horrid night. Her life wasn’t necessarily easy before it all happened, and I’ve always admired her for her strength. But crps has affected her so heavily and I can see that when we get to see each other from time to time. it’s been hard to be so far away from her with all of us being in school… I can’t imagine how alone it has to feel to not have anyone understand you and only say they’re “sorry”, or “that sucks”. I admire her and I always will, I hope she knows that. Sam, you are so strong and you WILL succeed at whatever you attempt to do in your life; you were completely destined to be great. You’ve always been a hard headed and determined bad ass, and that’s one thing that has never-and will never-change. You are loved. 🙂

    • Samantha reeb

      Thanks maria, it means more to me than you will ever know. You will always be one of my bestfriends forever. You’re one of the few people that has been by my side through thick and thin and I couldn’t be thankful enough. It was a horrible night but we all came out a little bit stronger.

  6. Irene Bull

    Just been reading Samantha,s story what a journey I hope one day she does find someone who she can be happy with and to share her amazing life. As I read through her story I felt relief at the end that she has managed to be positive and she has learnt to accept her disability. Good luck to her and all the very best for the future Samsntha.

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