When most people find out I have rheumatoid arthritis, they assume my joints hurt because they imagine I have osteoarthritis — the “wear-and-tear” arthritis in which cartilage that cushions your joints wears down with age. The “old person” arthritis. It’s harder to picture my kind of arthritis: a systemic autoimmune disease that affects joints and organs all over my body and doesn’t care about age.
Some people who know a little about RA are aware that is also causes fatigue, which is debilitating and takes a huge toll on quality of life. But there are very few — it’s mostly those who live with it, know someone who lives with it, or treats those with it — know that rheumatoid arthritis causes cognitive dysfunction, and what exactly that is.
The Lack of Awareness for Cognitive Dysfunction
Even in literature, research, awareness, and advocacy I don’t hear enough about the cognitive dysfunction aspect of living with RA. Research always tends to say more studies need to be done to better understand cognitive dysfunction in those living with rheumatoid arthritis.
I personally find that this brain fog can be one of the most difficult — and sometimes embarrassing — parts of living with rheumatoid arthritis. It can have a big impact on our daily activities. It’s not just RA that causes cognitive dysfunction, either. I have friends living with other conditions like fibromyalgia, lupus, psoriatic arthritis, and ankylosing spondylitis who report the same frustrating symptoms of cognitive dysfunction (aka brain fog).
How Cognitive Dysfunction Affects Me
Here’s a list to get us started:
- Confusion
- Forgetfulness
- Quietness
- Tiredness
- Slurring my words or use the wrong word
- Staring off into space
- Unable to concentrate
- Stuck in a dream-like state
- Information goes in one ear and out the other
Sometimes people think I am forgetful because I’ve been using marijuana, but I know that can’t be the whole story. Over the years since being diagnosed with RA, I’ve developed the memory of a goldfish. I often forget what I am saying mid-sentence or walk into a room and forget why I entered it. I have to read a page sometimes two or three times to gather its information. I can completely miss appointments or mix up days or times.
What Makes My Cognitive Dysfunction Worse
Weather
Sometimes I feel controlled by the weather because a rainy day can leave me feeling so tired, forgetful, and lethargic.
Lack of physical activity
Part of this is about physical activity because on because rainy days I am less active and cooped up inside, which makes me more foggy and sluggish.
Fatigue and feeling tired
My cognitive impairment is most heightened when I am tired, fatigued, or have just had my medication. If I get a bad night’s sleep, I can basically write off the day that follows it.
Overscheduling
Overdoing it and taking on too much in one day is another culprit.
RA flares
If I am having an RA flare, I can anticipate issues with my memory and brain function.
Feeling emotional
Even being emotional can trigger the foggy sensation. I’m not very good in arguments because I’ll forget what I was arguing about. When I am struggling with anxiety or depression, my cognitive impairment is heightened even more.
The added frustrations of cognitive dysfunction can make me feel really bad about myself. It can cause some embarrassing moments or make me feel like a huge letdown. I hate when my forgetfulness makes me look flaky or feel like a bad friend. It’s not me: It’s my disease, I swear.
What Helps Me Fight Brain Fog (But It’s Not Easy)
Managing my RA with medication
Controlling inflammation seems important in managing my cognitive dysfunction, although every arthritis patient is different. What works for me, medication-wise, might not be what you need. It was a journey for me to find the appropriate medication regimen, including trying multiple biologics. When you and your doctor find a regimen that is working with you, stick with it.
If you suspect any of your medications could actually be making you feel foggy (I call this a medication hangover), talk to your doctor about. I find that scheduling a rest period after taking
Following a healthy lifestyle and self-care
Taking good care of myself has had some of the biggest benefits on my cognitive function. This includes regular daily exercise, staying hydrated, and eating a nutrient-rich diet. I’ve noticed that when I fall behind on these, my cognitive function declines. Self-care usually picks me back up. Rest regenerates me — but only to a certain extent, as I still live with chronic fatigue.
Writing things down and setting reminders
I can’t stress the importance of writing things down or take a photo/screenshot of something you want to remember. I have alarms and reminders set on my phone consistently. I could not for the life of me remember passwords until I wrote them down. I try to keep my house fairly simple and organized so I can find stuff easily.
Getting enough sleep
If I don’t get enough sleep — which, yes, can be difficult with chronic pain — it leads to more fogginess. On days when I am tired, I find I can function a little easier if I schedule some moments of rest in the day. Sometimes caffeine helps, but sometimes it aggravates me — hat’s another balancing act.
Having a daily To-Do list
As a single mom and patient advocate, I have to balance a lot of obligations and responsibilities so I write a list of everything I need to do, every day. I scratch off as much as my body (and mind) will let me do each day. I understand not every day will be the same — some better, some worse.
Saying no
I say no when I have to and I listen to my body. Sometimes I can’t give anything when I am are running on only 10 percent battery life. I’ve learned that it is OK to say “Hey, look, I have to cancel or reschedule today. I am too foggy and I need rest.”
Asking people to remind me
I even tell people now they’ll have to remind me and to not get mad if I forget — it’s nothing personal; it’s not them, it’s me. Honesty (and educating others about our diseases) helps guide others to be supportive and understanding. It helps prevent people from being judgmental or frustrated with us.
It is also important to laugh it off when those embarrassing moments occur. We are only human, after all.
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