What is fibro fog and what does it feel like? That is just one of many things I wish my doctor would have explained when I was diagnosed with this chronic condition. He did a fabulous job at explaining musculoskeletal and nerve pain, but that is pretty much where the lesson ended.
Fibro fog. aka brain fog, symptoms can be terrifying whether you were aware of them or not. Having some knowledge can help rule out the super scary stuff. Understanding these symptoms has helped my family understand some of the strange things I say or do.
So what does a fibro fog flare feel like?
Let’s take a somewhat humorous walk down my foggy memory lane to find out!
Unplugged. This is my favorite way to explain fibro fog. One moment my brain is functioning just as it should, then BAM, the power goes out. How long the power outage lasts is anybody’s guess. It could last for a few minutes or longer.
Imagine having an in-depth conversation about something you are passionate about. You are sharing facts and opinions left and right when suddenly you have no freaking idea what you were saying. This is fibro fog.
Fibro fog hides, jumbles, and loses my thoughts and words. And I am not talking about difficult words. Simple words, the kind even a first grader would know and use will slip my mind. In other words, fibro fog makes me feel like an idiot.
I began experiencing this symptom around the time of my fibromyalgia diagnosis in my early 30’s. Not wanting to be embarrassed by it, this typically outspoken and loud woman became a quiet observer. As I learned more about brain fog, I found that the best way to deal with it was with humor.
It is not uncommon for my conversations to turn into games of charades. Whenever I am at a loss for a word, my family comes to my rescue. With words, hand motions, and sometimes even drawings, I attempt to describe the word that is failing to come forward. My family then starts shouting out answers until I either crown one the winner or call the game. We have been playing fibro fog charades for many years. And although I still experience word loss, I am getting better at describing what I am searching for and getting the answer to it much faster than before. To help keep my brain filled with words, I play a lot of word-based games and make time to read daily.
Brain fog also scrambles words. My husband was the first to notice when I began saying the opposite of what I actually meant. Thankfully he knows me really well, anyone else could have taken offense or felt wounded by how my mouth failed to translate my thoughts. Twenty years of having him point out the wrong words, I have gotten to where I actually hear the wrong words slipping from my lips. Sometimes I notice it immediately and correct what I say, other times it takes a few minutes or maybe a day, but eventually, I realize that I didn’t say what I meant to.
Words are not the only thing that fibro fog makes me forget. For the past 20 years, I have struggled to remember names, passwords, and more. Painful flare days are a blur. It is pretty much guaranteed that anything said to me during that period will not be remembered.
I will have a great idea for a blog post and forget it two minutes later. It is not uncommon for me to go to the store for ONE item, arrive, and come home with bags full of all kinds of products, but not what I left home for.
Because of this, I have become the queen of lists!! I have notebooks everywhere! There are pretty notepads all over my house, in my purse, car, and even in the cargo area of my power wheelchair. If you are ever at a loss at what to gift someone with fibromyalgia, just know that you can’t go wrong with notepads and pens!
Alarms and calendar notifications have become my best friends! And to make avoid forgetting about an event after the first alarm goes off, I set multiple notifications in various intervals.
No two fibro fog flares feel the same. While forgetting words and names can be funny, this form is not. Imagine having to drive from San Diego to Los Angeles in a thick fog. You know where Los Angeles is, you’ve been there many times before, but have never made the drive from San Diego. Driving between the two destinations is actually a beautiful ride, but imagine making your trek on a highway that goes through mountains and has many turns without knowing where they are or being able to see more than a few feet ahead. It can quickly turn a joy ride into a horrifying experience.
That is what a thick fog flare feels like. I know what I need to do, but for the life of me can’t remember how to do it. It doesn’t matter if it is something that I have done a million times before or not.
While none of the symptoms I have described in this article are fun, I find this one to be the most frustrating. I find it occurs mostly when the inflammation around my spine is at its worst or when my body doesn’t know how to process a new pain.
I spent five days dealing with the latter this month. The cause was obvious. I have been experiencing more frequent and severe pain throughout my abdomen. My body didn’t know what to do with the pain and shut down. I could feel it happening, step by step. Muscles began to weaken. Energy levels plummeted. All the while it felt like someone was pouring a pitcher of sand into my head. I went from writing all day to being unable to compose a simple text the next. After a few days of rest, my body adapted to its new pain level. My muscles slowly regained their strength, my energy returned a little bit at a time, and one scoop at a time, the sand was removed from my skull.
Although not a frequent flare, it is one that through journaling, I have been able to piece together the triggers. Getting through this flare is actually quite easy since it renders my mind and body useless. Besides losing time better spent with family or working, the hardest aspect of this fibro fog flare is explaining it to others, especially while in the middle of one.
Imagine not being able to put two words together and trying to explain that you will be back in action in a few days. It doesn’t work! That is why it is so important to educate our family and friends ahead of time. Those who live with me know the signs. The rest have no clue, nor do I expect them to. For that to happen I would need to post my every ache, pain, or symptom online as they happen. Whether they understand or not, I do ask that friends and family who do not live with me to respect me when I reply with a text saying “Brain–dead. Talk Soon.” It’s not that I don’t want to talk to them, but that I want to remember what they said.
Fibro fog can be confused with or mask symptoms of dementia, Alzheimer’s, and other cognitive problems. Always talk to your doctor to make sure that what you are experiencing is a symptom of fibromyalgia and not something else. The more I research my symptoms, the better understanding I have of my body and illnesses.
A few tips to help combat fibro fog is to keep your mind sharp. Read, play word games, take notes, and don’t be afraid to have some fun!
Use physical and digital notepads and reminders.
Forgetting grocery items has decreased since I started having my groceries delivered. I don’t feel rushed and shop pain-free from my sofa.
Include your family. Discuss ways of bringing signs of these flares to your attention without being hurtful or condescending. Ask for compassion and remember that you are all in this together!
What do your fibro fog flares feel like?
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