In 2004, I was in one of the worst flares of my life, the pain so intense and omnipresent it cast a shadow over everything. For the first time in a long time, I had problems focusing. Where I once was able to relate a conversation in detail, now I couldn't remember what someone said half an hour ago. Where I once could have a vigorous debate lasting an entire evening, now I couldn't follow someone's argument from point A to point B.
Cognitive problems are the dirty little secret of RA. Many of us have problems with short-term memory, logic and focus, but no one talks about it. Admitting that your brain is not sharp as it used to be is really scary.
A study by Shin et.al. found that 31 percent of people with RA experienced cognitive problems such as short-term memory, verbal fluency and logic memory. This was more likely to occur in people who had low income, no low education, took oral steroids and had a higher risk of cardiovascular disease. Unfortunately, the study did not suggest any causes for this, which can leave many of us worrying about losing our minds.
I am not a scientist and I have not done studies on numerous people who live with RA. All I have is my own experience and I have some ideas about what happens with RA and your mind.
During that big flare mentioned above, I met with a social worker. After about half an hour, I wasn't able to focus any longer. I cried when I told her, feeling humiliated and devastated at this loss of ability to pay attention. "Of course you can’t focus," she said. "Pain takes up a lot of room in your head." And then I cried again, but this time with relief.
No one had ever told me that before. All these years later, that simple statement remains one of the most precious gifts I have ever received. It was an explanation that gave me an exact reason why my previously sharp mind had turned into a fog. And it was a validation of just how profoundly impact of pain can be. Pain does take up a lot of room in your head. It makes it hard to concentrate on anything but the screaming coming from your body. Just as you would not be able to focus on a conversation if a loud fire alarm was blaring in the room, paying attention to the intricacies of a discussion is impossible when you're in pain.
Getting your RA and your pain under control are important first steps in dealing with cognitive problems. Even if you don’t go into remission, any suppression of your disease will help you be more mentally sharp. As well, effective pain management can be a huge help in helping you get your brain back. Your ability to focus will improve when that fire alarm is no longer blaring next to your ear.
Fatigue in general affects cognitive performance, sometimes profoundly so. The more tired you are, the worse you perform. RA comes with a healthy dollop of chronic fatigue. When your body is under attack, it makes you tired. So does inflammation and pain. The Johns Hopkins Rheumatoid Arthritis page states that "people with rheumatoid arthritis often need over 10 hours of sleep a night, or eight hours a night and a two-hour nap during the day." Our society is not made for that kind of sleep pattern and between the demands of your day and the demands of RA, many people are tired all the time. This will have an impact on your ability to focus and remember.
Reducing your level of tired can start with getting as much sleep as possible, even if it means going to bed shortly after dinner once or twice a week. Learn to manage your energy levels. The Spoon Theory is an excellent visualization tool to remind you to work within your limits. There are also things you can do to build energy, ranging from supplements to exercise and emotional support
Earlier this week, I had decided on a really good topic for today's post. I just had to get my Humira shot and then I‘d start writing. Within 5 minutes of my shot, three things happened: I could feel the usual buildup of woozy pressure in my sinuses, as well as the usual buildup of gas. And thirdly, I couldn't remember what that great idea for today's post was.
Many of the medications used to treat RA have side effects that make your mind extra fuzzy for a couple of days after you take them. On top of that, they also tend to make you tired. Not only do you have side effects that mess with you memory and your ability to focus, but you also get that extra bit of tired that double the effect. The irony is lost on none of us.
Most of us learn to work around these side effects. We schedule our meds for times when we're not working and move through the world in a slightly fuzzy state for a couple of days. We make sure there are notepads and pens in every room and figure out the reminder function on digital calendars.
Having a slightly fuzzy brain doesn't have to be the end of the world. Finding the humor in the situation helps take the sting away. And remember that you're not alone. Other people with RA know what you're going through. And best of all, so does pretty much everyone else. Whether it's from fatigue, menopause or multitasking madly, most people know what it's like when your brain doesn't perform perfectly.
How do you manage your fuzzy brain?
Lene is the author of the award-winning blog The Seated View.