How I Deal With RA Brain Fog
In medspeak, brain fog is called cognitive impairment, and it can be way more disruptive than you realize.by Lene Andersen, MSW Patient Advocate
My mind is full of fog as thick as pea soup, my thoughts unintelligible slippery shapes only barely visible. Finding the right word takes effort and a concentration I don’t have as I fumble in the mist for something with the right texture and sound. Where once I had a memory like a steel trap, capable of remembering conversations verbatim, now it’s more like a sieve, filtering out the topic of a chat, sometimes even the fact that the conversation occurred.
I have brain fog, and it’s one of my least-favorite symptoms of rheumatoid arthritis (RA). I’m not alone. According to the Arthritis Foundation, brain fog is a fairly common symptom of RA affecting between 30% and 70% of people living with the condition. It is also part of many other types of chronic illness, including fibromyalgia, migraine, multiple sclerosis, and chronic pain conditions. Even perfectly healthy people can experience moments of brain fog, usually related to sleep problems, burnout, or hormones changes during pregnancy and menopause. This might make it sound almost normal and merely inconvenient, but it can be debilitating and life-changing, demonstrated by the medical word for the problem: cognitive impairment. It’s characterized by memory problems and issues with mental clarity, focus, and sharpness, all of which make it harder to retain/earn new info, solve problems, and sometimes even just follow a conversation with a friend.
I’ve had autoimmune arthritis since childhood, but my brain fog didn’t reach Olympic-sport level until I developed fibromyalgia about 15 years ago. It was one of most terrifying symptoms I have experienced in five decades with chronic illness—I thought I was losing my mind. Having watched my father deteriorate under the onslaught of vascular dementia, it was much too close to home.
My first step to figuring out how to live with brain fog was a conversation with my doctor: “How will we know if I’ve got Alzheimer’s?” She assured me that she’d know, as the symptoms of dementia are unique and different from brain fog, more often affecting your ability to function, such as holding down a job or doing chores. It would take some effort, but she said I’d be able to figure out how to work around my mental fuzziness.
Learning to live with brain fog didn’t happen instantly (when your memory sucks, keeping track of what works and what doesn’t can be a bit of a challenge) and of course, I am still frustrated at times. However, my RA is a great tutor that over decades has honed my ability to work around obstacles and limitations, so I knew I had the skills to do it again. These are the four techniques that work for me:
Staying on top of treatment and self-care. I realized very quickly that the more pain I have, the foggier my brain is. A study in the journal Pain Research & Management showed that being in pain can decrease your long-term memory, cognitive flexibility, and problem-solving skills. Reducing my pain means staying on top of my RA treatment and pain-management techniques, like naps, CBD oil, and pacing myself. In addition, I prioritize self-care and my mental health (depression can contribute to brain fog). And, I exercise my brain by reading the news, solving crosswords, and having impassioned debates with my partner.
I use notes and reminders. I write everything down and then sometimes forget all about it. Which is why there are colorful Post-it notes on my desk, my mirrors, and the fridge. On bad brain-fog days, I don’t try to remember a task or chore—that’s a sure path to frustration and depression. Instead, I focus on just remembering that I have to look at my notes, and this shortcut helps me focus on what’s important (the task) instead of beating myself up about something I can’t control (brain fog).
Technology has also been a huge help. I enter everything into my online calendar and happily surrender control of my life to it. It keeps track of appointments and meetings with others, as well as the ones I set with myself to pay bills, make important phone calls, send birthday cards to friends, and so much more. It’s also connected to my Google Home, which will cheerfully convert my spoken words to create reminders and appointments when something important pops into my mind at 2 a.m.
I practice letting go. I’m not going to pretend: Losing my steel-trap memory was devastating. But it has also been an exercise in finding out what matters. I’ve let go of my lifelong goal to be fluent in five languages, satisfied with two (English and Danish) and scuttled plans to go back to school for a Ph.D., but more importantly, I learned not to care quite so much. These days, I fully admit that my memory is as good at holding on to things as a colander is at holding on to water and am the first to laugh about it. Because guess what—being able to remember what your sister said six years ago on a Thursday isn’t the point. The memory of having a wonderful time together is, and here technology comes to your aid again. If you don’t remember the event, social media will remind you of the anniversary and nudge a smile onto your face.
I pivot, then dance. My decision to not care (most days) was liberating. It freed me to focus on creating new wishes and goals, as well as realizing that my foggy brain doesn’t stop me from achieving some of the old ones. I can still learn and grow and love, just a little slower and with the help of technology and reminders from family and friends. I’ve written books with brain fog, made new friends (despite taking a bit longer to remember their names), made beautiful food while improvising a half-remembered recipe, and I still get up every morning and live my life.
Although I now remember fewer of the itty-bitty details, feelings stay vibrant and I think that’s the real gift of brain fog. By learning to focus and remember by relying on other types of input, such as our senses and emotions, we can be more present in the moment and the memories that do stick around are infinitely richer.
Brain Fog Article: Oregon Health Sciences University(n.d.). Brain Fog vs. Dementia. Center for Women's Health. ohsu.edu/womens-health/brain-fog-vs-dementia
Executive Function Article: University of California – San Francisco. (n.d.). Executive Functions. Weill Institute for Neurosciences Memory and Aging Center. memory.ucsf.edu/symptoms/executive-functions
Adults and Chronic Pain Research: Nadar, M. S., Jasem, Z., & Manee, F. S. (2016). The Cognitive Functions in Adults with Chronic Pain: A Comparative Study. Pain Research and Management, 2016, 1-8. hindawi.com/journals/prm/2016/5719380/
RA and Brain Fog: Says:, K., Says:, J., & Says:, H. (2015, June 10). The Link Between Rheumatoid Arthritis and Brain Fog. blog.arthritis.org/rheumatoid-arthritis/rheumatoid-arthritis-brain-fog/