I've never really written much about my fibromyalgia. Mostly because I hate typing the word because that red squiggly line shows up under it telling it's not a word. Of course I've had more than my fair share of tweets and facebook statuses about bad fibro days, fibro fog and sleeping until 2 pm. Really writing about it, though? Never happened. I think the real reason is because I've read a lot of other people write about it and it's basically the same. There is the "woe is me" story or the "I'm not my fibromyalgia" story of triumph and I fall somewhere in the grey area in between. It really depends on the day. When I woke up this morning, something said you need to write about it. Probably because today isn't a great day and after a string of really good days it's really easy to forget when you absolutely don't want to move. So in the interest of actually listening to the little voice in my head when it tells me to write, here goes.
I was 16 when I first noticed the strange pain in my right foot. I had chalked it up to working as a cashier and being on my feet all day. I don't know why but I brought it to my mother's attention. She's not the type to panic, this time she did. I went to the first doctor and explained the pain, he casually brushed it off as pain related to my being on my feet, told me I needed to exercise and sent us on our way. Little did I know this would become a recurring theme in my journey. A year later when that pain became numbness and that numbness turned to tremors in my hands it was time to see another doctor. After what seemed like a million tests, x-rays, CAT scans and MRIs we had absolutely no answer what so ever. I knew a lot of things that I didn't have though. That was fun. Having someone tell you "well we know you hurt and we know that you're tired and your hands shake and you have all this stuff that is no denying that but we don't know what it is". I sort of shut down. I had decided that maybe it was all in my head. There is no way that all these things could be happening and medical professionals had no idea what it was. That's impossible. I had family say that I was acting out for attention and that my mom should stop feeding into my delusions. That was the roughest part for me. Not having a diagnosis I could deal with eventually but the fact that no one really thought I was sick was hard. I retreated further. I learned to put on a brave face and simply say that I'm "fine" whenever anyone would ask. Even if they asked specifically how everything was going with the doctors everything was "fine". You can't judge what you don't know. If someone pointed out that I looked tired I'd say "Oh I do? Everything is fine." My mom is the only one who saw me at my worst. Crawling to the bathroom when I could barely stand to get out of bed, struggling at times to hold a pen to write because the tremors in my hands were out of control and breaking down completely in frustration because the people who were supposed to be there and make sure all was well had all but turned their backs on me. She forced me back into a doctors office and demanded that someone figure out what was going on.
Another year passed but I finally got in with a rheumatologist. She goes through my files and does a few more test and finally after 3 or 4 years of running back and forth to doctor after doctor we had an answer that seemed to fit. I was diagnosed with fibromyalgia. Nope, I had never heard of it either. She gave me and my mom some pamphlets and information to check out to learn more and off we went again. I found all the books and scoured the internet for all the information I could find. It was a bit like someone knew my life. Everything added up and finally made sense. I had something to tell people if they asked what was going on with me. The diagnosis was not without it's problems. Fibromyalgia is sort of the non-disease disease. It's the catchall term for "hey we really don't know what's causing your pain". There is no magic pill that makes my sleep patterns normal or takes the pain away. The best advice I've found it just to get up and move and that'll relieve a lot of the problems. Sounds great on paper, right? Get up and move. Ignore the pain and the fact that you haven't slept for more than 3 hours over the last 2 days and move. That's going to happen. Even worse than that is the fact that there was some disagreement in the medical community about fibromyalgia. Some doctors don't believe that it's a thing. Of course I didn't just read that I had to live it. Shortly after my diagnosis I changed primary care physicians. My new doctor was much older than my rheumatologist. While I was going over my medical history I mentioned how I was recently diagnosed with fibromyalgia. He immediately asked for the rheumatologists information to get my records from her so he could look them over. He made a point of asking was she a "young" doctor and proceeded to rant for a few minutes about how these young doctors are too quick to diagnose people with the "buzz disorder of the moment" and that I was entirely too young to have been diagnosed with fibromyalgia. It changed the entire mood of the appointment. He drew several vials of blood and was determined to find out what was "really" wrong with me. I never heard his findings because he retired the next month. His replacement was a new young doctor who decided that the rheumatologist probably knew what she was talking about and he wasn't going to step on any toes.
I'm going to take a sidebar here to note that a few years later he grossly misdiagnosed meningitis as a muscle spasm in my neck. I spent 4 days in the hospital. He also misdiagnosed my mom's pneumonia as a chest cold. We have a new doctor now.
I don't know if the older doctor ever found anything because no one ever called me with any results and the new doctor didn't seem to have any of the information from the old doctor. He took over the practice but with new staff and apparently no access to my prior record. A seed had been planted though. What if it wasn't fibromyalgia? I began to research other possibilities. There were other disorders that matched me better. I don't know if I was ever tested for those. I was and most of the time still am a really passive patient. I never ask what I'm being tested for when the vials of blood are drawn. When I've given test results I never ask for specifics. I have been saying for years that I was going to start over and get a second opinion on the diagnosis I've have for the better part of a decade. I haven't yet. I probably should because there are a lot of things for which I could use some answers. The process is so tedious I think I've been avoiding it.
I have my good days and I have really not so great days. I don't like to say bad because any day that I'm here is good. I'm still growing and learning with fibromyalgia. I've spent more time that I've wanted to explaining why can't always run faster and jump higher than everyone else. I try not to let it get in the way of things I want to do. I do know my limits and I know to listen to my body. I've missed out on a lot because sometimes sleep does sound a lot better than going out. I'm getting better with that. I'd like to believe that you can learn something from everything. I've learned from this experience that there is no disease, disorder or anything else that should stand in your way. I spent a lot of time in the beginning of this being sick. Good days and not so great days I was sick. I know now that I'm given good days for a reason. I need to get up, get out of bed and do something on those days. It doesn't have to be a lot just getting up and getting dressed and being part of the world is something. I've learned not to isolate myself when I feel bad. You never know when a quick phone call with a friend will do everything to make you feel like a person again. The most important lesson that I've learned is just to listen. Mostly to myself. Today wasn't the greatest day for me but I'm up and I'm dressed and I'm writing because I listened. I know that's corny and it's a lot to learn from something as simple as a diagnosis of fibromyalgia but it was my lesson to learn. It's not the story of triumph or the woe is me story. I haven't run any marathons, because I think running is stupid and I haven't begged you to feel sorry for me because I've done enough of that for myself and trust me that was stupid too. It was part of my story though. My story will probably never end with "and then I competed in a triathlon" that's cool. I'd much rather it ended with; I did everything I ever wanted to do in my own time.