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When the Brain Fog Comes Before Your Fibro Diagnosis

I walked into the kitchen… and then I just stood there. I glanced around, looked at my hands, and looked back behind me. What in the world am I doing in here?

Has this ever happened to you? I’m sure it has – it happens to everyone now and then. The difference this time was that it was the third or fourth time that morning I had done something like that. My brain was just not fully functioning.

It scared me.

I went to work and realized something else – I had post it notes everywhere, and I mean everywhere. Notes on the phone to remind myself to make a call that was already on the checklist I had created in my notebook. Notes on the computer screen reminding me to be sure to email someone. They were on the notebook page of “to-dos,” telling me to add a couple things to the list itself. I even used the virtual ones on my computer as a way to keep track of things.

When did this happen? How did this happen? What was going on?

I have always been a very type A, checklist-making overachiever and workaholic, with some anal retentive tendencies. I prided myself on my ability to multi-task, finishing projects before they were due. To forget the most mundane things, that was terrifying.

I found I was talking to myself more, too. I was practicing for conversations or food orders or whatever situation I found myself in. I’d go over my order in my head or quietly to myself in my car so that I didn’t stumble and stutter my way through it. I had to practice my coffee order in the car before I could give it at the counter.

I was lost.

And this was the start of the path to my eventual diagnosis of fibromyalgia. The brain fog came first. The pain and other “fun” bits came along for the ride, but this “lack” in my mental capacity came first, the harbinger of bad news.

Years have passed and yet I still find myself relying on some of these tricks to get through the bad fog days, which luckily, have decreased somewhat. There are more good days than bad now, but there’s always a bit of haze that I fight through each day. I have learned some tricks that have helped me to keep ideas moving and the fog to a minimum. It has taken time and patience, mixed with a lot of trial and error, but here are a few that have worked for me:

1. Write it down. If it isn’t written, it doesn’t exist. Now that can mean actually pen to paper, Evites, or notes in my phone, but it must be written down. That said, find a system that works for you. For any and all events, calendar reminders that are in my laptop and synced to my phone are a must. Pen to paper has specific rules so I don’t end up lost in post-it note hell. And quick things, like shopping lists or where I parked, go in my phone notes.

2. Be aware of your diet. For me, I do a lot better when I am eating full vegan, with lots of green leafy veggies. As awful as that might sound, it works for me. Maybe cutting sugar or caffeine will work for you. Then it becomes a game of chicken to see who wins your need for symptom relief or that big, cheesy piece of pizza. (Hint: sometimes cheese, butter and eggs will win, but far less than they used to!)

3. Talk to your doctor. Be honest about what is happening. Share what is working and what isn’t. If you can’t have that conversation with your doctor, find a new one. I was really lucky on the doctor front and have had a wonderful team of women that listen and are supportive. I’ve had a bad brush with a doctor or two, but compared to others in this community, I am #blessed.

4. Love yourself. Yes, it’s frustrating, embarrassing, and awful to pull into the Target parking lot and have a) no clue how you got there and b) why you drove there at all. But, you shake it off, park the car, grab a cart, and enjoy the peace of walking thru the store until something sparks your memory.

We would never be as hard on anyone else as we are on ourselves. We’d forgive others 99 percent of the things we don’t forgive ourselves for. Take time to remind yourself that you’re trying and doing the best you can with the current crappy hand you’ve been dealt. (Somehow I have five cards and I’m not sure what I am playing — I’ve got an ace of clubs, a reverse Uno card, a Skip Bo card, and a pair of twos.) Make the best with what you have and give yourself the love you would show anyone else.

5. Be open. When I’m having a particularly bad day, I tell my family. They need to know. What we deal with isn’t outwardly visible so sometimes they need a gentle reminder especially on bad days. If something goes amiss elsewhere, I’ll call “my bad” as needed and get it fixed.

6. Find an outlet. If walking and exercising help you to burn off your frustration, by all means, strap on some tennis shoes and get moving. Some people do yoga and meditate, while others dance, heroically and epically, around their kitchen. Other people journal or write poetry. Still others paint. Find a way to express yourself and your feelings, burn off the energy associated with the frustration, and refocus yourself. Lose yourself in something, anything that lets you be you and heals you from the inside out. Get coffee with your friends. Read that new book. Make time to remind yourself of who you are beyond your fog.

Now, there are dozens of other ideas, but these are a few that have made a difference in my life. Don’t be afraid to embrace how much it all sucks – it is more empowering than you know. While it is a chronic, frustrating symptom, it doesn’t define you or your life – it is just a footnote in your journey.

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