Surviving College With Complex Regional Pain Syndrome

School, particularly college, can be an incredibly difficult and time-consuming part of life. Students that were top of their class in high school with little to no effort suddenly find themselves thrust into a harsh and competitive environment where, at times, no matter how hard you try, it’s just not enough. Because of this, they may begin to compensate by losing sleep, eating less/poorly and not taking the proper time to rest, all in favor of studying more. Habits like these become necessary (despite what parents argue – but mom, I really need to stay up and study for that test or I’ll fail), and after time, begin to take their toll on the body. Imagine how difficult school is for the typical healthy student, and then add the complications of a chronic illness.

 

I was diagnosed with complex regional pain syndrome when I was 13 years old. I was struggling with the aftermath of my diagnosis, adjusting to the constant excruciating pain and trying to break through the fog of painkillers as a 13-year-old. After having been a straight-A student for years, I suddenly found myself nodding off in class, having difficulty focusing and studying and my grades started slipping ever so slightly. Somehow, through sheer stubbornness and determination, I survived that year.

I asked to be taken off all my medications, and although they offered some mild relief and helped me sleep, I didn’t feel like I was really living my life. It felt more like being constantly trapped in a dream. I did well through high school, taking honors courses and maintaining above a 4.0. I had hopes to play softball in college, but after two shoulder surgeries (the second one being a week before I moved to college), my career ended sooner than expected.

I made the decision to attend UC Irvine to study biological sciences, in the hopes of one day becoming a doctor myself. What my shoulder surgeon didn’t know was that surgery often triggers the spread of CRPS. A few days before I left for Irvine, I started to experience pain in my hands.

The first quarter of college was a wildly exciting experience. Moving away from home, getting a fresh start and having so much freedom was a bit overwhelming. I missed my parents and home, but I was happy in Irvine. I loved my classes, new friends and just Irvine in general. I felt like I had finally found where I belonged.

My health began to decline, and before Thanksgiving had passed I was driving back and forth for doctor appointments. I started to take medications again because of the amount of pain I was in. Writing was incredibly difficult, and I often had trouble typing. By the time I had come home for Christmas, the pain had spread up both of my legs and into my hands, chest and face. I failed my first class ever, which was discouraging because I had studied for it quite a bit. The pain kept me from sleeping, and I spent many nights wide awake, only to be exhausted in the morning. I had explained my medical history to my roommate, *Angie (name changed), in the vaguest of ways, not wanting to alarm her. I figured she needed an explanation for my multiple bottles of medication, strange physical therapy habits and constant absence.

Christmas break was enough to recharge me a bit, and I started winter quarter with a fresh determination. I was able to cope, but I could tell the pain was progressively getting worse. A week before finals, I came back to the dorm from class and laid on my bed for a bit because I was in quite a bit of pain. Within moments my barriers came crashing down, and I was unable to move except for the spasms from the pain. I was choking out sobs but no one could hear me. In that moment, I was utterly helpless. There is nothing more terrifying than losing absolute control of your body. I lay there for almost an hour before Angie and a friend came home from class. Angie immediately called 911 and then my parents to let them know what was happening. An ambulance came and took me to the hospital, where they did a full workup and, of course, found nothing.

When I was discharged, I was given a prescription of Vicodin in case the pain became too severe again. I recovered within a few days, and continued with my daily schedule. Within a week (two days before my final) I had a flare and was forced to stay in bed and take Vicodin to alleviate the pain. During spring quarter, I had a flare almost every two weeks. This meant not being able to get up due to severe pain and staying home waiting for it to pass. There were times I had to go to chemistry lab because absence was not tolerated, and barely made it home. If I couldn’t make it to my bed, Angie had to pick me up off of the floor, try to get me into bed and feed me my medications (because I couldn’t use my
hands). She would sit by me, waiting for the sobs to die down and the medication to kick in. She was an incredible friend.

Around Christmas of my second year I decided to withdraw from the university to receive ketamine treatments. The pain had worsened to the point I knew I would not survive another quarter. The infusion was 10 days long, and after that I spent the rest of my time at home trying to recover both physically and mentally. Being at home for those few months was lonely and empty. I’ve always loved school – I love the idea of going to class and learning new things and challenging myself. I wanted to be at school with my friends, taking classes and making progress. Instead I spent most of my time in bed, waiting for my mom to get home from work so I could spend time with her.

After a quarter off I was able to return to school, switch majors and gain control of my situation. The pain has gotten worse, but I’ve gotten smarter in handling it, knowing when to just stay home and save my strength for another day. Everyone always says health should come first, but you never really think about it until it happens to you. It’s so easy to get wrapped up in school or work, and you begin to put other responsibilities above your health. You think you’re invincible, that you can take anything, until your illness proves otherwise.

College is a terrifying, competitive place to be at times. My stress levels skyrocket around midterms and finals, driving me into flares. I’m learning to listen to my body and put myself first, even if it means I have to miss a lecture or research lab when the pain is too much. This is something I still struggle with, but I’m making the effort to listen to my body, even if I don’t always like what it has to say.

It certainly hasn’t been easy, but I am blessed to be here and do the best I can each day. I am as well as I need to be. In the fall, I will start my fourth year as an undergraduate student, and graduate in spring 2018. I hope to obtain a Ph.D. in Neuroscience or Psychology, and pursue a career as a Neuropsychologist. In the absence of sports, science has become my passion. I’ve found a subject that excites me every day, and gives me something to look forward to. For that I am incredibly thankful.

To all of the chronic pain patients out there fighting through school, I want you to know you’re not alone. It’s not going to be easy, and it’s probably going to hurt like hell. There’s always going to be days you want to give up, days the pain is too much and you just can’t do it anymore. You might take medical leave, or you may have to take summer or online courses. You’re going to have to change your lifestyle and put your health first, and learn to listen to your body and read the signs it gives you. But if it’s something you’re really passionate about, I can promise you, it’s worth it.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via AlexRaths.