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Living in an RA Fog

Brain Fog of RA

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By Patient Ambassador Linda Kaser

For 25 years, I taught preschoolers before morphing into a university setting, working with teachers in the classroom. I had a master’s degree and was working on my doctorate when I noticed my brain wasn’t kicking into gear. My thinking was muddy, slow, confused. I found myself forgetting my daily schedule of meetings. At times, I couldn’t find my words. It happened when I was talking to a colleague or working with a student or writing a report. It was demoralizing and embarrassing. I could see the word. I knew its meaning, I knew the synonyms, but the word escaped me. It was like being in a fog.

This began happening when I was in my 50s. Feeling nervous and apprehensive, I approached my rheumatologist. Always concerned about the whole me and not just my joints, I knew I could turn to her. “It’s brain fog, and it’s due to your RA,” she said.*

Wait a minute! What? My joints ache and swell. The fatigue is overwhelming, but I can’t sleep. I’m at risk for heart disease, and now you tell me my brain is malfunctioning?

Picture1While the medical experts can’t put their finger on the direct cause of brain fog, it can be associated with rheumatoid arthritis. This disease doesn’t just take its toll on a body, it also impacts the mind. Worry, along with depression and anxiety, are common in those with chronic diseases. Several studies cite those with RA do more poorly on cognitive tests. Added to that is the long list of medications we take. Many have the side effects of “drowsiness and dizziness” listed on the label. Even over-the-counter medications can cause brain fog. The results can include confusion, lack of concentration, poor memory, and forgetfulness.

Okay, how do I cope with this? What do the experts say? How can I change my life moving forward? I had to play detective. When did I notice my foggiest moments? Did it happen when I was having a flare? What was I doing? What time of day? What is my medication schedule? Last infusion? Anxiety level? It was a lot to think about!

In my search for more information, I found some key elements for helping to reduce brain fog are looking at your RA care plan, exercising, sleeping, managing stress, and being organized.

  • In looking at my RA care plan, testing was an important component. Vectra determined the activity of my disease and with some other blood work helps my doctor and me guide my care plan. In my case, it meant moving to a new biologic.
  • Okay, what’s next? I can get more exercise.
  • I can work on sleep but it’s my toughest nut to crack. My brain, while it’s not always at its best, is a challenge to turn off at bedtime. Deep breathing and visualization has helped.
  • Managing stress? Another tough nut. I had to have a conversation with myself. I had to make time for me. Find a slice of the day where I was alone and without something to handle on my to-do list. In my detective work, I realized mornings were best for me. I had more energy and brain power. I focused on scheduling meetings and writing reports in the morning. All of this worked and helped alleviate stress.
  • I always thought of myself as organized. Appointments were “mostly” on calendars, and I had a grocery list….somewhere. It was time to get more serious. Sticky notes, a notebook and calendars were the answers. I had two calendars, one in my office and another in the kitchen. I learned how to use the calendar feature on my phone. All of my appointments, their times and where they took place were noted. My notebook kept the to-do list in order for each day. Sticky notes with lists for Target, Costco, and Kroger were attached to the notebook. When I left for the day, I had a sticky note with times and destinations for meetings and errands, which I stuck to the dashboard of my car. I took copious notes in meetings. Afraid of forgetting my questions, I kept a list to take to meetings. Before heading out for the day, I took some deep breaths and centered myself.

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Understanding more about myself and my needs, I had to let go of always being on point. In meeting with people and forgetting or searching for a word, I would tell them it was a brain fog kind of day. I shrugged and smiled. People understood.

I’m retired now. The only stress I have (other than dealing with RA) is which book to read. What should I make for dinner? Pool time now or later? What’s my next fun project? Five days out of the week I walk, ride my bike or take a yoga class. I still use my sticky notes and have two calendars. I’m into crossword, logic, and jigsaw puzzles to keep my brain active and alert. I still forget words and how to spell them (even as I write this) but it’s okay. I’m good with me. I am who I am. Having knowledge is power. Knowing the how and why of RA along with research has kept my brain and me moving forward with a smile.

*This is based on the personal experiences of Vectra Patient Ambassador Linda. It is not considered medical advice.

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