In the summer of 2004, I was bitten by a tick. I was told by my doctor’s office that I had nothing to worry about because the tick hadn't been in me long enough to do any harm. Usually the protocal is 24 hours; if it's in you for less time they THINK you won't have a problem. They told me to keep an eye out for the classic "bull's-eye rash." If I got that, call them immediately. I never got the rash, so I didn't worry.
Not too long after the bite, I started with horrible headaches, abdominal pain, ringing in my ears, dizziness, constant flu-like symptoms, and over the years began getting joint pain, muscle pain, and extreme fatigue. Neurologic and cognitive issues became out of control. Things got much worse after a bad roll-over car accident I had in 2006, jolting my entire health system out of control.
Last summer (2009), I started forgetting what I was saying in the middle of every conversation. I started making myself talk really, really fast, just so I wouldn’t forget what I was talking about. My throat felt like it was closed up. I'd choke for no reason. I began dropping things, too. My hands twitched like crazy and I would sit on them all the time so no one would notice. They also began to cramp up and close. I would make myself hold large objects thinking that I could prevent the joints from wanting to close up. I had difficulty holding the steering wheel. My thighs trembled all the time and my knees would give out.
I had been at my job for four years at this point, and I knew my duties inside and out. I could do my job with my eyes closed; however, I would get confused doing something as simple as checking in a patient. I would get frustrated with myself all the time. Dyslexia became more common for me. I had anxiety often, and over the smallest things.
My fatigue was so bad I would sleep in my car at lunch, or go home and take a half hour nap. I couldn't (still can’t) wake up in the mornings, and when I do, it takes my body forever to loosen up. I tend to walk like an old grandma, and my ankles don't bend. Really, I thought I was losing my mind. I started to cry often at the loss of "myself" and not being able to do a thing about it.
I went as far as letting my doctor give me injections in my wrists, hips, lower back. They were excruciating and I’d cry the entire drive home. Was this really my life? I eventually stopped the treatment when they wanted to do injections in my neck. No way! On to the next doctor please…
In six years I had been to over ten doctors trying to find answers. Most of them told me nothing was wrong with me. I had so much blood work that I’m surprised I’m not anemic from all the blood they took. My test results were always in the perfect range. Eventually, they tested me for Lyme Disease but the test came back negative (I now know that 70% of the tests show false negatives).
Over time I was sent to see a sleep doctor, neurologist, gynecologist, psychiatrist, someone for my stomach, etc., to address each of the issues. For the longest time they all kept saying nothing was wrong. One said I was just depressed from the car accident I had, and they told me my aches and pains were a result of the depression. “Here, take this Cymbalta. It’ll help make you better!” Ick. That didn't work and I left my doctor wondering if I was really going crazy.
How can I be wrong about what I felt and what I was going through? I trusted the medical community, but I was so confused. That in itself can lead you into a depression. Eventually one of my doctors listened a bit and acknowledged that I did have true muscular pain and joint pain. He diagnosed me with Fibromyalgia and Chronic Fatigue. Finally something more than the usual “There’s nothing wrong with you” diagnosis.
Lyme is usually misdiagnosed as Parkinson’s, arthritis, MS, lupus, Fibromyalgia, gout, ADD, Epstein Barr virus, Lou Gehrig’s Disease, Chronic Fatigue, and many others. I knew there was something more to just having Fibromyalgia, but how could I prove it? How could I prove what I had--and felt--was real? How could I make others understand that I wasn't just being lazy, and that my fatigue was beyond my control?
I had been working out with a trainer, lost weight, and was on a healthy path. During that time I broke down at the health club because I got to a point where I could do less and less. Eventually I could only walk on the treadmill, but then that became too difficult for my joints. This was not a weight issue. I know it's hard for some to believe. My diet was great. I was on a good track. So why was I getting worse?
Last summer, while in the midst of my worst symptoms, I was watching the news. Those who really know me know I love Channel 7 News. I never change it. For some bizarre reason I didn't like their "Special Segment" and changed the channel to 5. Must’ve been a God thing--I was just flipping through--because I heard the words "Fibromyalgia, Chronic Fatigue, Parkinson’s, etc." I immediately turned up the volume, and what I saw and heard next changed my life...
Part 2 Friday.