Chronic Illness Brain Fog, Part One: What It Is
Updated April 19, 2021
Many people with chronic illness also experience the phenomenon colloquially known as brain fog. This includes symptoms related to problems with focusing and concentrating, memory problems, and basically your mind feeling less nimble than it used to. It can be a really big problem, but it doesn’t receive a lot of attention. So let’s talk about. Today, I’ll take a look at what brain fog is and what causes it. Come back tomorrow for tips on how to cope.
My brain fog story
I used to be one of those annoying people who have a really good memory. For a long time, my rheumatoid arthritis (RA) was fairly quiet, tamped down by a lot of anti-inflammatories (this was before effective treatments were available). I had some brain fog issues, but I don’t remember it being as debilitating as what came later.
Yes, that’s pretty ironic, isn’t it?
Then I got fibromyalgia in 2003, followed by an increasing flare of my RA, and massive brain fog ensued. I went from being able to recite conversations almost verbatim to having trouble remembering what was said a few minutes earlier. I couldn’t focus, couldn’t pay attention, couldn’t hold two thoughts in my head at the same time. It felt like my head was full of fog, words and concepts faint outlines that I couldn’t articulate.
So much of my self-identity was about my mind. My body has been wrecked since I was a child and for a long time, I’d felt as if my mind — the way my brain worked, my personality — was the best thing I had to offer. And now, it felt like I was losing this vital part of me. It was one of the scariest things I have ever experienced.
It did get better, though. Once I figured out fibromyalgia and started getting some control of the pain, the fog thinned a bit. Then I started Biologics and my RA flare became controlled, things got a lot better and I could think again. Let me say that again: I could think again. Quite literally.
That said, I still have brain fog, even on my best day. On my worst day, it’s pretty bad, my brain moving like molasses in January.
What is brainfog?
The actual medical name for brainfog is cognitive dysfunction. Which makes you realize just what it is: your cognition (brain or mind) is not working normally. The first time I saw this term, I got the heebie-jeebies. Cognitive dysfunction is something we associate with dementia and seeing that applied to this thing I live with every day felt really awful. But it was also really good moment and I’ll get back to that crazy statement when I talk about coping tips.
Brainfog (or cognitive dysfunction) is exactly what I described earlier — a lack of ability to focus, lack of mental nimbleness, trouble concentrating, and memory problems. In your average healthy person, it can have a number of different causes, such as lack of sleep, stress, hormonal changes (I’m sure you’ve heard of “pregnancy brain” or the forgetfulness related to menopause, which I call meno brain). But what I am going to focus on here is the brain fog that is associated with a number of chronic conditions.
What causes brainfog?
There are a number of factors that can contribute to brain fog. The first is biological. A couple of recent small studies began to indicate that inflammation — such as that experienced in rheumatoid arthritis and other conditions involving chronic pain — actually affects all of your body, including your brain. One speculated that inflammation may affect the connectivity between brain structures involved in processing and memory. The second study found that “acute inflammation requires individuals to exert greater cognitive effort when preparing for a task in order to maintain adequate behavioral performance.” That is, you have to work harder to pay attention and perform a task. It’s new research and much more needs to be done, but when you live with chronic illness, these statements resonate deeply. RA (for instance) is a whole body disease, so why wouldn’t it affect your brain?
But other aspects of simply living with a chronic illness can also contribute to brain fog. For one, deep and chronic fatigue is often associated with these conditions and it makes it harder to concentrate. When you’re tired 24/7 regardless of how much rest you get, it’s almost impossible to focus. Depression can also give you brain fog and many people with chronic illness experience depression. Feeling overwhelmed is another big one, and also side effects from medication. And then there is the one that really helped me back when I thought I was losing my mind.
I met with a social worker to talk about something that I (again, somewhat ironically) have now forgotten. After about 30 minutes, I had to ask to stop the session because I was no longer able to focus and take in what she said. I did that thing we do, apologizing profusely, probably crying. And then she said these magic words: “of course you can’t focus. You’re too busy dealing with the pain.”
Sit with that for a minute. Doesn’t that feel as if someone just saved your life?
She explained that when you have a lot of pain, you are so busy constantly coping that this is where most of your mental energy goes. When you’re really busy with a task, focusing, listening to others, or thinking about other things becomes a distraction.
Which brings me to multitasking. This is something that we all desperately try to do, but studies have shown that people can’t do this. Our brains are not hardwired to do more than one thing well at a time. That when someone is focusing on performing a task and asked to do something else at the same time — whether it’s talking on the phone and driving, or writing an email while listening to a meeting, or something really simple like walk and chew gum (OK, maybe that’s possible. Some days), they do both tasks really poorly.
And here’s that revolutionary idea: if you are dealing with pain and constantly feeling like crap, that is your primary task. It is so overwhelming, all-encompassing, and requires so many of your available resources that your focus simply can’t shift. If you take your attention off the pain for a minutes, it becomes an uncontrollable tsunami.
But you don’t have to live like that. There are ways to reduce brain fog and terrific coping strategies that can help you feel more like yourself. The second post in this series is all about coping with brainfog.
What’s your experience with brainfog?
Tag: bad memory, brainfog, chronic illness, inflammation, memory problems, RA, side effects
22 Comments
Read More
Discover what else I've been writing about...
I also have brain fog. What you say about my brain moving at the speed of molasses is so true. I often have difficulty stringing thoughts together into something that is coherent. Then I learned the secret to having brain fog,,,,
But then I forgot it.
Yeah, I get that. I mean, I know you’re joking, but at the same time I keep forgetting to cope! So aggravating.
I agree that when my brain seems to have turned to mush, I know that my pain is out of control. Of course when your brain isn’t functioning well, it’s hard to remember what the necessary steps are to get back under control…sigh
Exactly. It’s not until the fogs begins to lift that I start remembering what to do. Argh!
Oh, I wish I didn’t know what brain fog feels like. Sometimes I’m fine, but other times, I cannot focus at all. My husband often explains something to me and I’m sure I have a blank expression on my face. Occasionally, surprise him and take something in first time.
Great post, Lene, with an excellent explanation.
Thanks so much! (and I completely relate to the blank look moment)
I appreciate you sharing your story! It helps me understand how various people in my life may be feeling who have something similar.
Thanks so much. And I appreciate the comment!
This must be such a difficult thing to deal with. Chronic pain is bad enough but adding brain fog on top of that is so challenging I can imagine. I so appreciate you being so candid and outspoken about your experiences because it brings so much awareness to chronic pain and the issues surrounding it. Thank you for sharing.
It really is hard to live with. The pain is one thing, but there are tricks to deal with that. And your brain fog, it’s really hard to get out of it. Thanks so much for your comment!
Oh, dear! My husband just asked me what I was doing and I said to him that I was reading an article about myself. Lene, you’ve described my personal experience precisely and touched all the “hot buttons” of feelings associated with this experience. I’ve experienced brain fog 2 years ago to the extent that I couldn’t even follow the line of conversation. If my interlocutor interrupted me by asking a question or offering his/her own related experience, I couldn’t continue from where I left off – I couldn’t remember. It was so embarrassing! I was only 49 years old but I felt like I was very old with dementia.
However, I was NOT in pain. The reason for my brain fog was Hashimoto’s hypothyroidism, an autoimmune disease. I’ve checked out your Part 2 article: coping with the brain fog. You’ve mentioned thyroid issues there as one of the possible causes. I’ve been doing everything you mentioned in your suggestions to cope with the condition. But coping wasn’t enough for me, I wanted to get rid of it once and for all.
I started hormone therapy and in a couple of months my blood test showed my TSH/T4/T3 hormone levels in the normal range, but my brain fog didn’t go away even a bit. At the same time, I had a sleep disorder, was exhausted throughout the day. I believe that these symptoms were also caused by hypothyroidism, but they may have added to the brain fog.
Anyway, I found a solution for myself in a high-quality CBD oil. Two days after I started taking it, I could go through the day without taking a few hours nap. In two months I could think clearly again. I first became a loyal customer of this company, and then I even decided to take advantage of their income opportunity by promoting their products.
I won’t mention the name of the company here because it’s your blog and I certainly don’t want to spam it. But, soon after I joined, this company patented technology that protects the integrity of CBDA (cannabidiolic acid, a precursor of CBD). CBDA is a pure COX 2 inhibitor and therefore can compete with opioids when it comes to pain and inflammation relief. Scientists are working on creating synthetic CBDA for analgetic medication since natural CBDA is unstable. Because of this patented technology my company has already launched CBD/CBDA oil formulated for extra strength pain relief. So, not only this oil should lift your brain fog, but it will also manage your pain. I’m not in pain, and therefore I use another full-spectrum CBD oil, but my husband is using the one I’m recommending to you – it truly works wonders! Please email me if you are interested in more information. You’ll have my email address when I submit this comment.
Warm regards,
~ Julia
I’m in the very lucky situation that marijuana is now legal in Canada, which means my visit to a cannabis clinic is covered by provincial health insurance. Sure, the products I take are out-of-pocket, but at least part of it is covered. I started taking CBD oil at the end of the summer, but it found that although it helps me sleep like a baby and deals effectively with my fibromyalgia pain, it also over time makes me a bit muddleheaded. My specialist gave me THC Sativa, which is doing wonders for my brain fog. Best of luck to you. And by the way, I really appreciate you respecting the space to comment without getting too specific. If people read it are interested, they can follow your link to your website.
I’ve experienced brain fog in the past after I was sick with glandular fever and it was awful. It’s hard to function normally and hold down a job when you have severe brain fog and fatigue. Thankfully my brain function is back to normal now.
I’m really glad to hear that you’re doing much better now. Like you said, it really difficult to get through your life with brain frog.
Receiving treatments for breast cancer and other associated conditions really disabled my thought patterns for some time. There are still things that I have been told did occur which I simply can not recall. It doesn’t happen a lot these days since I have been in remission for some years but many things I couldn’t recall then, I still can’t recall now. It feels frustrating but I can relate to the information you have shared here. I guess it is a process our body goes through in order to put the focus of our brain in the priority area that it is needed most?
Yeah, chemo brain, right? It’s a nasty thing. One of the things that really aggravating about having health conditions is that you keep having to make choices that can affect you in one way, to make sure that your condition is treated. Are you doing better now?
Seems we are all going through something in this world. Thank you for sharing your story.
we sure are. Thanks so much for commenting!
it sounds horrible, I am so sorry you have to go through this. Your social worker is golden. Brain fog must be very hard to handle.
It can be so hard. And then once in a while, when the fog lifts, it’s both exhilarating and kind of heartbreaking, because you realize what you have been missing. But, as with anything else, you can get used to a lot
Thank you for sharing your very personal story about brain fog and chronic pain. Your insight provided me a better perspective of understanding to the struggles of a family member who suffers from chronic pain. I look forward to reading the next in your series of coping mechanisms to help.
I’m so glad I could help! Thanks so much for letting me know.