Saturday, December 31, 2011

You can call me Fibro-Girl!

Hello, family and friends!

I've decided to start this blog for a few reasons. Mainly so I can keep all of you updated with my fibromyalgia - it's hard for me to talk about that out loud without getting emotional, so I find typing it to be a far easier way to communicate. Also, I want to be able to rejoice and share with you guys all of the great things that God is doing and has done in my life. (And part of my fibromyalgia treatment is to share what's going on with my friends and family. Can do'sville, babydoll!)

My fibromyalgia story begins when I was 15. In the fall of 2005, I contracted mononucleosis and had to take sick-leave from school for a few weeks. For the next year, after recovering from my initial diagnosis of mono, I struggled with my health - every time someone coughed in my direction, I seemed to get sick. I would start to recover and try to be more active, but any exertion made me feel like I'd been hit by a truck for the next two weeks. Eventually, that pain was happening almost every day. I had pain all over my body that never really went away. I had severe body aches, frequent viruses and infections, migraines, skin sensitivity, extreme fatigue, and rosacea. After some googling, my mom and I decided that I might be gluten intolerant, so I stopped eating wheat. I originally felt a whole lot better, but that faded and I was once again in pain. The idea that I might have fibromyalgia popped into my head around the summer of 2007, but when I asked my doctor about it, she scoffed and ignored the majority of my symptoms. That fall (Oct. 2007), my health had worn me down in so many ways that I couldn't go back to school. 

My parents were great advocates for me - they found a program for me to continue my education and took care of everything with my previous public school, although I did have to re-do the half semester I had started at OCHS. I started to do an independent study program with the University of Nebraska-Lincoln where I had to teach myself. The curriculum was incredibly difficult, but I finished three years later in 2010. Throughout this time, I continued to have health issues, although my doctor dismissed it as depression. I eventually saw countless other doctors (neurologist, gastroenterologist, an abdominal surgeon, several chiropractors, as well as several internal medicine doctors), but no one knew what was going on. My blood work was great and all of my CT and hida scans turned out wonderfully. Thoughts of fibromyalgia entered my head again, but I continually dismissed those ideas.

Later in 2010, I enrolled at GSC and started feeling a lot better, even though I never felt 100%. By December, I felt really sick again. I saw my regular doctor, and was told once again that I didn't have anything wrong. By May, I finally found out that I had gallbladder disease and had a cholecystectomy (gallbladder removal) just one week before my summer course started. I seemed to be doing better, but fell back into a bad spell two months later and eventually had an exploratory laparoscopy that revealed a hemorrhagic ovarian cyst and appendicitis. My surgeon cleaned up the internal bleeding and removed my appendix. Five days later, my fall semester started.

After several weeks of recovery, I realized that, while my abdominal pain was gone, all of my other symptoms were still there, and some had even gotten worse. That leaves us here, in December 2011. 

During a visit with my primary physician, I was put on some medicine known to treat fibromyalgia (cymbalta) and others to control my pain level (lortab and robaxin). My doctor hadn't directly said I had fibromyalgia, but I decided to start up my research again and realized that I had a very high chance of really having fibromyalgia, as I was exhibiting the majority of problems known to be symptoms. During my follow up appointment my doctor gave me the official diagnosis of fibromyalgia.

This was initially a great thing for me. Giving my pain a name felt empowering - if it had a name, I could beat it. Unfortunately, fibromyalgia isn't something that can be beaten. It's a chronic condition that never goes away. It's a daily fight. One good thing about giving it a name, however, has been knowing that my pain is real.

Fibromyalgia is a disorder, or a syndrome, that is characterized by widespread musculoskeletal pain that has no officially known cause, although it has been known to follow a physical or emotional trauma. My doctor and I are confident that my fibromyalgia stemmed from my bout with mono. New research has revealed that fibromyalgia may be a hypersensitivity of the nerves. There are a multitude of fibromyalgia symptoms, so I'll keep it specific and only include the main ones that affect me:
  •  widespread muscle and joint pain that can feel like a deep ache or a stabbing/shooting pain
  •  extreme and continued fatigue
  •  insomnia
  •  depression
  •  headaches
  •  skin sensitivity
  •  bladder abnormalities
  •  numbness in random places
  •  memory and concentration problems (also known as brain fog or fibro fog)
  •  prolonged muscle spasms
  •  palpitations
  •  immune dysfunction
  •  rosacea
  •  light, sound, and heat sensitivity
  • GERD (gastrointestinal reflux disease)
Unfortunately, while most non-fibro people may experience some of these symptoms every once in a while, these are things that I deal with every single day. Some days I need a lortab just to sit comfortably, while others I can manage without any pain medication. There is no inflammation involved with fibromyalgia, which is both and good and bad thing. Good because, well, there is no inflammation! Bad, however, because NSAIDs really don't help me at all. 

Thankfully, I have a great and supportive family. These past few years have been really difficult, and my mom has been my greatest supporter and advocate. She has always believed in me and supported my decisions. She has been a friend to me when I haven't had anyone else, and she has always encouraged me in every aspect of my life. She has encouraged me to trust in the Lord and to make the choice to be happy. I'm so blessed to have such a wonderful mother. 

If you made it all the way through this post, thanks for reading it! It means so much to me when my family members or friends take the time to look up and research fibromyalgia. :) This is something I will be dealing with for the rest of my life, and I am so grateful when people take an effort to learn about my future.

I love you all! God bless!

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