By Tressia Demaskie,
As we know, fibromyalgia comes with a wide variety of symptoms. The amount of symptoms can vary greatly from person to person. I wouldn’t say there was any one symptom that makes living with fibromyalgia easy; however, I think some aren’t quite as difficult as others.
One of the symptoms of fibromyalgia that I personally find most difficult to live with is “fibro fog,” otherwise known as “brain fog”: the short-term memory issues and lack of ability to concentrate or focus. My husband laughs when I say, “Communication was always one of my strong suits!” Those who know me best would most likely find humor in that statement as well because they know how I love to talk! I too can see the humor from their point of view, but sometimes this makes me want to cry.
The “fibro fog” seems to set in the worst when my pain level is high. I find it hard to find my words or I forget what I’m saying mid-sentence. I sometimes stutter, mispronounce words or say something that sounds completely off-topic. I respond to people with statements that make no sense at all. I’ve learned to write things down and use my calendar a lot – more then I ever used to. On my best days, I try to laugh at myself or laugh with those laughing at my words. On my worst days, I break down and cry, feeling as if a piece of me is gone. At times I’ve tried to express this to others and they’ve responded with, “that happens to all of us!” or “I do that, too.” They just don’t get it. It’s more than the occasional “I walked into a room and forgot what I went in for.” Just like the fatigue of fibromyalgia is more than general tiredness or exhaustion common among the majority of people, the brain fog is an extreme symptom that many don’t understand.
Writing, reading and spelling are difficult at times even though these are things that were once easy for me. I find myself constantly re-reading to grasp what it is I’m reading or writing, or spelling words then staring at them because they don’t appear to be correct – sometimes they are and sometimes they’re not. Concentration can be difficult as well. Whether it’s concentrating on someone talking to me or on what I’m doing, it can be an extremely difficult task. Sometimes I feel like in order to learn to live with fibromyalgia, one has to mourn the loss of their old self since it changes so many aspects of their life.
The other symptom of fibromyalgia I find most difficult to live with – which occurs when I’m stressed and when I physically overdo it – is the feeling of my skin burning. Some describe it as feeling as if your skin is badly sunburned. I often describe it as feeling as if I was in a house fire. Before I was ever diagnosed with fibromyalgia, I quite often used the word “burning” to describe my pain to my husband. He always thought it was an odd choice of descriptive word to describe my pain. It wasn’t until after my diagnosis and research of fibromyalgia that we both understood this type of pain and my choice of words.
Some say the descriptive word “burning” when used to describe pain is one only people with fibromyalgia understand. I’m not sure that’s the case, but I know for me it’s a commonly used word and I live with the symptom almost daily. There are so many triggers to this fibromyalgia symptom. Something as simple as not getting enough sleep can cause my body to feel like this. I wouldn’t say it’s just my skin that burns but more like it’s coming from the inside out. An upsetting conversation can affect me for days, sometimes longer. I can also be affected by a strong scent that’s overpowering, our puppy’s excessive barking or bumping my elbow on something. (Although our puppy’s excessive barking can cause an undesirable symptom, her unconditional love and companionship make it a price worth paying.) I’ve learned to limit life’s controllable stress that can trigger it as well as rid my life of those who cause it. Too much physical activity is the one trigger of this symptom that has been hardest for me to adjust to because I don’t sit still very well, but I’m slowly learning. It’s taught me to pick which activities are worth the added pain and which are not. Sometimes I have no choice and I just have to deal with it, but when I do, I choose wisely.
These two symptoms are my worst fibromyalgia symptoms aside from the physical, all-over body pain. Learning to live with them has been challenging, to say the least, but I’m trying my best and that’s what counts. Wake up, put on a smile and put one foot in front of the other – soft hugs, my fellow Fibromyalgia Warriors. Stay strong!