As we know, fibromyalgia comes with a wide variety of symptoms. The number of symptoms can vary greatly from person to person. I wouldn’t say there was any symptom that made living with fibromyalgia easier; however, I believe some are not as difficult as others.
One of the fibromyalgia symptoms I personally find most difficult to live with is “fibro fog,” also known as “brain fog”: short-term memory problems and a lack of ability to focus or concentrate.
My husband laughs when I say, “Communication has always been one of my strong points!” Those who know me best will also find humor in that statement, as they know how much I love to talk! I can see the humor from his perspective too, but sometimes it makes me want to cry.
The “fibro fog” seems to be at its worst when my pain level is high. I have trouble finding my words or forget what I say mid-sentence. Sometimes I stutter, mispronounce words, or say something that seems completely off-topic. I respond to people with statements that don’t make sense. I’ve learned to write things down and use my calendar a lot—more than ever. On my best days, I try to laugh at myself or laugh with those who laugh at my words.
On my worst days, I break down and cry, feeling like a piece of me is gone. I’ve sometimes tried to express this to others and they’ve responded with, “It happens to all of us!” or “Me too.” They just don’t get it. It’s more than the occasional “I walked into a room and forgot what I walked into.”
Writing, reading, and spelling are sometimes difficult, even though these are things that used to be easy for me. I constantly find myself rereading to understand what I’m reading or writing, or spelling words and then looking at them because they don’t seem right—sometimes they are, and sometimes they don’t. Concentration can also be difficult. If you focus on someone talking to me or what I’m doing, it can be an extremely difficult task. Sometimes I feel that in learning to live with fibromyalgia, you have to mourn the loss of your old self because it changes so many aspects of your life.
The other symptom of fibromyalgia that I find most difficult to live with—which happens when I’m stressed and when I’m overdoing it physically—is the burning sensation of my skin. Some people describe it as feeling like their skin is being sunburned. I often describe it as feeling like I’m in a house on fire.
Before I was diagnosed with fibromyalgia, I used the word “burning” quite often to describe my pain to my husband. He always thought it was an odd choice of descriptive words to describe my pain. It wasn’t until my fibromyalgia diagnosis and research that we both understood this type of pain and my choice of words.
Some say that the descriptive word “burning” when used to describe pain is one that only people with fibromyalgia understand. I’m not sure if that’s the case, but I know that for me it’s a commonly used word, and I live with the symptom almost daily. There are so many triggers for this fibromyalgia symptom. Something as simple as not getting enough sleep can make my body feel this way. I wouldn’t say it’s just my skin burning, but rather that it’s coming from within.
A disturbing conversation can affect me for days, sometimes longer. I can also be affected by a strong smell that’s overpowering, our puppy’s excessive barking, or bumping my elbow against something. (While our puppy’s excessive barking can cause an unwanted symptom, their unconditional love and companionship make it a price worth paying.) I’ve learned to limit the controllable stresses in life that can trigger it, as well as to eliminate those that cause it from my life.
Too much physical activity is the only trigger for this symptom that has been harder for me to adjust to because I don’t feel well, but I’m slowly learning. This has taught me to choose which activities are worth the extra effort and which ones aren’t. Sometimes I don’t have a choice and just have to go with it, but when I do, I choose wisely. but I’m learning little by little. This has taught me to choose which activities are worth the extra effort and which ones aren’t.
Sometimes I don’t have a choice and just have to go with it, but when I do, I choose wisely. but I’m learning little by little. It taught me to choose which activities are worth the extra effort and which aren’t. Sometimes I don’t have a choice and just have to go with it, but when I do, I choose wisely.
These two symptoms are my worst fibromyalgia symptoms outside of physical pain. Learning to live with them has been challenging, to say the least, but I’m doing my best, and that’s what matters. Wake up, smile, and put one foot in front of the other—sweet hugs, my fellow fibromyalgia warriors. Stay strong!
