Sunday, June 5, 2011

Post #1: My story

I thought it might be interesting to create a blog about what it’s like to be a full-time student and musician living with fibromyalgia. First off, I'd like to share my story.

I was diagnosed with fibromyalgia when I was 17-years old, but looking back on memories I know it developed when I was 14-years old...the summer before I started high school. I can actually pinpoint the exact day I began having problems. I woke up unable to move. I couldn’t sit-up, turn, or even breathe deeply without feeling a horrible, jolting, electrifying pain down my lower back. My dad pretty much carried me to the chiropractor. The x-rays were normal; I apparently threw my back into misalignment while I was asleep. After having my back readjusted and receiving several treatments, the immediate pain went away. However, from that point on I always had “back problems” and muscle pain. I remember sitting in my English class freshman year, craving deep tissue massages to the point of bruising my back by beating it against the chair, desk, wall corners, or anything that would help relieve the muscle pain. I went to massage therapists and they were always surprised that a little 100lb 14-year girl was requesting deep-tissue massages. They would literally beat the crap out of my back and it still wasn’t enough for me. With the pain came sleep disturbances, and with that came fatigue. It only got worse until I was diagnosed my senior year of high school.

Anyway, to make a long story short, high school sucked. I trudged through it like a zombie and I can barely remember anything because I was always so damned tired and in pain. The women in my family all had similar symptoms (muscle pain and fatigue), but I was told that it was just something you had to deal with. My school grades were abysmal. The reason why I was able to keep my GPA above a 2.5 was because I took a lot of music classes and aced them all. My academics... well, that's another story. I think I took Geometry three times. I can't even remember. I went from taking AP-prep classes and being ahead of other students in curriculum, to taking review classes with the kids who did not care about school (and generally more concerned about getting high).

I'm not stupid. Most people knew that. But, being sick led to a lot of absences, which led to being behind in classwork. My only motivation for going to school was to go to band practice (which was luckily the first two periods of the day). After that, I'd often go to the office and beg my mom to come pick me up and let me leave school early. It was difficult to do homework because (with band rehearsals, jazz band rehearsals, youth symphony, and other music activities), I usually didn't get home until the evening and I was too tired to do homework. I'd end up falling asleep in the midst of homework. (I spent a lot of time sleeping...or trying, at least). Finally, when I was in the class room, I was usually in too much pain to be able to concentrate. Cold days were the worst on my back. I remember sitting in the back of the class room, bursting into silent tears because another student insisted opening the window and the breeze would cause painful muscle spasms. Another time, because a student accidentally rammed the back of their desk into mine.

I was finally referred to a rheumatologist by complete accident when I was 17. I had broken out into a rash that covered my face and, with my prior symptoms of pain and fatigue, it looked like I might have lupus. However, it ended up being fibromyalgia symptoms exacerbated by a severe allergy to shellfish. I honestly wasn't surprised when I was diagnosed with fibromyalgia (16 out of 18 tender points). I already knew I had it because my mom, aunt, and a few older female cousins also had it. However, I was really uneducated about fibromyalgia... it was just something we didn't talk about. I was told that doctors couldn't do anything about it and that if I complained to doctors, they would think I was a hypochondriac. I was surprised when my doctor told me that there was a lot that I could do to manage my fibromyalgia and lessen the symptoms. And yes, I took it to heart, because I was determined to feel better.

Being diagnosed helped empower me because I learned that I could do things to make the pain better. Luckily, at the time I was diagnosed I was also enrolled in a high school weight training class. The stupid high school requirement (that I dreaded so much, I put it off for as long as possible) ended up changing my life. (Thanks, Coach Smith, for kicking my ass). I learned that I could do something to help myself and make myself stronger. By the end of my senior year, I could bench press a maximum of my weight (100lbs), do sit-ups, push-ups, and run a decent mile time. This was life changing because I was never athletic or involved in sports and really identified myself as a weakling. It helped build confidence and helped me feel like I was taking control of my life. I did require a lot of special attention, and there was a lot of things I couldn't do / had to have modified, but by the end of the year, I felt like I was on par with the other students. Senior year, I also began getting straight-A’s for the first time in my high school career. I had done so poorly the previous years that I was in danger of not being able to walk at graduation! 

Here’s the funny part. People who have known me since high school weren’t really aware of my fibromyalgia but definitely knew about my shitty grades. People who have known me since college have no clue about the fibromyalgia AND don’t believe me when I tell them that I used to get grades lower than an A. (And yes, I got quite a few F’s in high school as well; I had to pull out my high school transcript as proof to one of my friends who didn’t believe me).

So, what has changed since high school?

Well, I’m incredibly confident in myself. That’s because I have to be. I have to believe in myself and know that I’m capable of so much more, or else it would be really easy to give up, say I can’t do it, drop out of school, quit the flute, and be unhappy for the rest of my life. I can’t use fibromyalgia as a crutch. I’ll admit, I have quit a few things on my side. I’m young and I’m small. I can make lifestyle changes and create good habits that can positively affect the rest of my life. Also, since I’m not overweight and I have no other medical problems, it’s easier for me to get into an exercise routine.

Yes, it’s hard. I kill myself to keep my 4.0 GPA. I pay for my own school. I work too many hours, too freaking early each day. I take too many classes. I refuse to give anything less than my best. I’m a perfectionist when it comes to music. I can’t say no when someone asks me to do a favor. I would rather be in pain than take pills. I run myself into the ground each day and give myself just enough sleep so that I can get up and do it again the next day.

To some, my lifestyle would be considered a form of torture, but oddly enough this is the happiest I’ve ever been in my life. I've received a total of 16 scholarship since my freshman year; this last year I received 8 scholarship (enough to pay for my tuition, rent, and living expenses). I am excelling in my music degree at an amazing music school. I'm in a top music ensemble and fortunate enough to play with amazing musicians. This upcoming Fall, I'll be applying to graduate school and auditioning into music programs. I'm really hoping I can get in somewhere with full-funding, that way I don't have to work on the side while going to school. I feel very lucky to be where I am today. And I'm proud of myself, because I know if I hadn't worked so hard and believed in myself, that things would be very different right now. I often imagine how easily I could have not gone to college, and instead stayed at home, gotten a crappy part-time job at a fast food joint, and let my illness overcome my life.

I’m not saying I’m perfect; I still have a lot of obstacles to overcome. I stopped exercising this past year and my fear of exercise has returned. I question my strength and ability. I’m terrified of having a flare up. I’m not as physically strong as I was two years prior. I was recently in a car accident and sustained whiplash injuries that make symptoms worse. But, if I could do it in high school, than I can certainly do it now.


  1. what instruments do you play? I plan piano, clarinet, saxophone, and voice. What do you plan to do with music? I am a perfectionist with music too. My students know that if they aren't going to play it right, don't play it. They all work very hard to make sure their music is wonderful and most of the practice very hard.

  2. I play flute, saxophone, piano, and compose. I really want to get my DMA and teach at the college level. I also want to maintain a private woodwind studio. How long have you been teaching?

  3. I have been teaching for 25 years now. I started at 18 right out of high school. I taught one year in an elementary school but I prefer private lesson teaching. I have made my living room my studio and I really like the students coming to me. For most of the 25 years, I went to them, but this is much better. If I need music, I just pop down the stairs to the office. If I need a copy, I just pop in the dining room (for now that is where the scanner is). I hope you will get your DMA soon and have your woodwind studio!

  4. Way to go Char! You have accomplished so much--I am impressed. I never been able to play music, but love it. I was a dj, mostly in the classic rock/pop field, for over about 20 years.
    Rock on. :)

  5. Thank you, Jackie! I appreciate it.