One of the symptoms of fibromyalgia that I personally find most difficult to live is “fog fibro”, also known as “brain fog”: the problems of short-term memory and the 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 better would find the humor in that statement also because they know how I love to talk! I can also see humor from his point of view, but sometimes this makes me want to cry.
The “fog fibro” seems to be at the worst moment when my pain level is high. I find it difficult to find my words or I forget what I am saying in the middle of the sentence. Sometimes I stutter, pronounce bad words or say something that sounds completely off topic.
I respond to people with statements that do not make sense at all. I have learned to write things and use my calendar a lot – more than I ever did. In my best days, I try to laugh at myself or laugh with those who laugh at my words.
On my worst days, I break up and cry, feeling like a piece of me is gone. Sometimes I have tried to express this to others and have responded with “that happens to everyone!” Or “I also do it”. They just do not understand it.
It is more than the occasional “I entered a room and forgot what I entered”. Just like the fatigue of fibromyalgia is more than a general tiredness or exhaustion common to most people, brain fog is an extreme symptom that many I do not understand
Writing, reading and spelling are difficult sometimes even though these are things that were once easy for me. I am constantly re-reading to understand what I am reading or writing, or spelling words then looking at them because they do not seem to be correct – sometimes they are and sometimes they are not. Concentration can also be difficult. If you are concentrating on someone who talks to me or what I am doing, it can be an extremely difficult task. Sometimes I feel like learning to live with fibromyalgia, one has to mourn the loss of their old self, as it changes many aspects of their life.
The other symptom of fibromyalgia is harder for me to live with – what happens when I’m stressed and when I physically overindulge – it’s the sensation of my burning skin. Some describe it as a feeling that their skin is burned by the sun.
I often describe it as a feeling as if I were in a house fire. Before I was ever diagnosed with fibromyalgia, I quite often used the word “ardor” to describe my pain to my husband. He always thought it was a strange choice of descriptive words to describe my pain.
It was not until after my diagnosis and investigation of fibromyalgia 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 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 of this symptom of fibromyalgia. Something as simple as not getting enough sleep can make my body feel that way. I would not say it’s just my skin that burns, but more like it came from the inside out. A disturbing conversation can affect me for days, sometimes more.
I can also be affected by a strong odor that is overwhelming, the excessive barking of our puppy or hitting my elbow on something. (Although excessive puppy barking can cause an undesirable symptom, your unconditional love and company make it a price worth paying.) I’ve learned to limit the controllable stress of life that can trigger it as well as eliminate my life from who cause it
Too much physical activity is the only trigger of this symptom that has been more difficult for me to adapt because I do not feel very well, but I am learning little by little. It has taught me to choose which activities are worth the added pain and which are not. Sometimes I have no choice and I just have to deal with that, but when I do, I choose wisely.
These two symptoms are my worst symptoms of fibromyalgia, apart from physical body pain. Learning to live with them has been a challenge, to say the least, but I am doing my best and that is 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