For me, fibromyalgia doesn’t just consist of chronic, daily pain. It also consists of severe fatigue, insomnia and brain malfunction commonly referred to as fibro fog. Imagine if you will, a young blonde woman getting disoriented and confused and incapable of making heads or tails of what is being told to her. Forgetting things she has just done, or most frequently forgetting words mid conversation. I haven’t been able to have a fluid conversation in years! Sometimes it gets so bad, I swear my brain hurts. A physiological impossibility, I know but still it “feels” that way. If I were a cartoon character, you would see the inner workings of my head as cogwheels and gears seizing and smoke coming out of my ears. I’m an intelligent woman but I often perpetuate the dumb blonde stereotype because of this condition. It is frustrating both to me and to those with whom I am trying to have a conversation. The severe fatigue is a never ending battle of which I usually lose. I have no energy. I have to drag myself out of bed every morning and it feels like I’m trying to move dead weight. Trying to get chores done is just as challenging and they often get put off. All I want to do is lie down and sleep.
The most upsetting part of it all is the total lack of understanding and compassion from my loved ones. I don’t “look” sick. I don’t “act” sick. I don’t whine, complain or constantly wince in pain. So, they think nothing is wrong. And when you are relatively young, they simply cannot grasp the idea that doing simple tasks is too painful and too difficult. I have had flare ups so severe that lifting something as light as a can of soup was agonizing and putting on clothes hurt because all my muscles were so severely inflamed that to even have anything touch my skin was painful. Day to day tasks on an average day is still pretty painful. For example, shampooing, brushing my teeth and washing my face. These things all make my fingers and hands ache. But my loved ones do not understand my hidden pain. Such is the life of being young and having fibromyalgia. But I am not alone. It is becoming increasingly common for younger people, especially women to be diagnosed with the condition. I personally know three other women under the age of 30 who have been diagnosed with fibromyalgia.
It has been 12 years since I was diagnosed but that feeling of pain all over my body had been going on much longer than that. In elementary school, I remember bumping into the corner of a desk with my hip and getting that all too familiar searing pain that lingered much longer than seemed normal. But I was a child and didn’t think much of it at the time. In my teens, I would wake up in the morning feeling like I got hit by a truck. Everything hurt. Even my face hurt. I would ask my doctor what was going on and they would say it’s nothing or ignore my question.
Skip ahead a few years and a few primary care doctors later and I’d keep getting either the same dismissive response or told I must be depressed. It wasn’t until I was 22 years old when I went to a specialist for a totally unrelated reason that I finally got an answer as to what was causing the pain. Her resident physician diagnosed me after taking my blood pressure and seeing my skin turn red but then turn white when she touched the red area. I wasn’t sure what lead her to think of fibromyalgia. It was something right out of an episode of House M.D. Then she asked me the million dollar question. Did I frequently feel all over body pain? Yes! Oh my God! Yes! Finally! I then told her about the pain I had been feeling for so long and that no other doctor would listen. She then asked how I’d been sleeping. I wanted to hug the resident doctor at this point. I told her I don’t sleep well at all. At that point she wanted me to get a blood test to rule out other issues like lupus, rheumatoid arthritis and other conditions that can cause similar problems. She also wanted me to come back and get a trigger point test. My blood work came back negative and I scored 100% on the trigger point test. The trigger point test is essentially the doctor pressing on certain areas on the body, many surrounding joints. Everywhere she poked and prodded made me cringe in pain. That, along with all my other symptoms finally got me a proper diagnosis.
Since then, I have been managing through prescribed medication. I also find that when I can manage to muster up enough energy, beginner level yoga helps to stretch out the muscles. It is still a daily struggle but I take each day as it comes and I will continue to fight through the best I can.
It boggles the mind that to this day there are still doctors out there who do not believe the condition exists and those who do acknowledge it do not know how to properly treat it. But there is hope. More accurate information is out there than ever before. There are websites dedicated to helping understand fibromyalgia, connect with others who understand and to help find doctors who specialize in treating it, among other helpful resources. My favorites are http://www.fmnetnews.com and http://www.fmaware.org