My “thing” has always been that I’m smart. I was never really athletic. I danced, but once college was over, other than the occasional taking classes for recreation, I stopped dancing and performing. I’m mildly creative, but not in a way that is as much a part of “who I am” like my “smarts.”
I’m smart. I graduated high school with the max amount of college credits that I could (30); got a full-ride to a private, liberal-arts undergraduate college to study chemistry; began publishing research and education articles in peer-reviewed journals during my first year of teaching (because I wanted to – not because it was tied to any sort of graduate degree…I hadn’t even started my masters at that point); wrote a high-school chemistry textbook; received regional and national awards for my teaching; earned a PhD (mostly paid for through academic fellowships I earned by my “smarts”).
I have other components to my self-identity (mother, wife, friend, creative, etc.) but my brain and academic/career successes is a major part of it. I’m proud of it.
I am an educator. I taught high school chemistry for 10 years. Even now that I’m no longer in the classroom I’m still an educator – I worked with science grad students and high school teachers as they partner to bring the grad student’s research into the science classroom – including leading the weekly graduate student seminar course and parts of the annual summer institute they attend. I still lead workshops for teachers, I still present at national conferences, I continue to be in front of groups of people teaching and leading discussions. I mention this part because I’m very comfortable talking in front of groups of all sizes – I’m used to it.
About two years ago I noticed that something wasn’t the same when I was teaching or leading classes and workshops. I couldn’t find words that I wanted to use. And not in the occasional way that everyone experiences from time to time. But in a frequent way. A way that was causing me to not be able to express the thoughts in my head. A way that was happening so often that I realized something was going on with me.
I’d find myself part-way through a thought while talking to the group and not be able to finish it, not be able to find the words I needed. They were there in my mind but somehow just outside of my grasp.
This happened often enough that I was noticing it and wondering what the heck was going on with me.
At some point after this had been going on for a while I learned about brain fog. Brain fog is associated with many autoimmune disease like Sjogren’s, MS or Lupus. In some instances, people with “brain fog” have been seen to have inflammation in areas of blood vessels inside the brain. Autoimmune can cause inflammation everywhere, causing all kinds of havoc: moisture-producing glands = tears and saliva issues; blood vessels around nerves = neuropathy; blood vessels in brain = brain fog.
“What is Brain Fog? Brain Fog is a lay term to describe fluctuating mild memory loss that is inappropriate for a person’s age. It may include forgetfulness, spaciness, confusion, decreased ability to pay attention, an inability to focus, and difficulty in processing information. Remember that gradual cognitive decline from early adulthood is a fact of life. Brain Fog can occur in Sjögren’s syndrome (SS), but other factors might cause these symptoms and should be considered by you and your doctor.” (http://www.sjogrens.org/files/brochures/brain_fog.pdf)
I first read about “brain fog” when I was given a “possible” diagnosis of Lupus in April 2013 and began research it. Brian fog is common in Lupus and appeared in information about it frequently (as opposed to the research I’d been doing on RA for a couple of years when that had been my diagnosis – I’d never run across it in that information).
By the time I began to read about it, it had already been happening for quite a while. Long enough that I’d noticed it already and was wondering what was going on with me. So I know it wasn’t a case of developing symptoms after you learn about the fact that they are possible. With physical symptoms I don’t worry so much about developing them after I’ve learned about them – they’re physical. But with this mental one I’m glad I developed and noticed it before I learned about it…I don’t want to make myself believe that I’m “imagining it” simply because I learned it was a possibility.
Nope…this really is happening to me.
I’ve always been one of the most efficient people I know. At one point I had a 4 year-old, a 2 year-old, taught high school full time, was in grad school working towards my PhD and was writing that chemistry textbook. I juggled it all – rarely forgot anything that I needed to do, and got it all done.
Now I can’t even remember to do the most simple things. I use my technology to try to keep myself on track – a calendar and todo list software that syncs to all 3 computers, my iPhone and my iPad. I have it with me everywhere and I still forget stuff far to frequently for my happiness! And that’s even with a “striped-down” life of responsibilities since I simply can’t juggle as much as I used to.
So then I start to look at the “tips for living with Brain Fog” that places like the Sjogren’s Foundation put out there…
The most prevalent tip is “Train your brain…if you don’t use it, you lose it!” Ummm…I’m pretty sure I’m using my brain enough. I have a “thinking” job, I have “thinking” side-jobs (educational author and presenter) and I even have “thinking” hobbies (like programming apps for the fun of it and writing this blog). I use my brain plenty, thank you…and it’s not helping!
The second tip that makes me outright laugh is “To help symptoms of ‘brain fog,’ minimize stress and anxiety. Take breaks throughout the day and learn relaxation exercises and practice them at regular intervals.”
Seriously? The “brain fog” is one of the things causing me stress and anxiety – along with every other aspect of living with this disease. And taking breaks throughout the day adds to the stress and anxiety because I just sit there and think about all of the things I SHOULD be doing instead of taking that break! (And let’s not forget the guilt that taking breaks brings…adding even more anxiety!)
And finally…”Letting yourself laugh and talk about your feelings will help reduce stress and anxiety, which contribute to fatigue and ‘brain fog’ in Sjögren’s.”
I have a hard time feeling like people really believe the physical symptoms I’ve having from this invisible disease…how in the heck and I’m going to convince ANYONE that I’m having cognitive symptoms? “Let yourself laugh and talk about your feelings”? Clearly that was written by someone that although they may be very well-meaning, does not have these issues on a daily basis.
I can barely talk about this stuff with my husband (in fact I don’t think I’ve talked about my brain fog symptoms at all), let alone laugh and talk about it with everyone around. I can only write about it here because (1) I’m forcing myself to do it as a way of dealing with it and (2) even though I know my friends and family are often reading this, it’s still feels way more “anonymous” than sitting down with someone and trying to explain my “brain fog” which I fear would be met with either “girl, we’re all running around forgetting stuff because we’re so busy” or “you’re just imagining it.”
This is more than “busy with children and all that is going on in life and forgetting things.” I experienced that for years. This is “I can’t think of words to say that I should be able to say.” This is “I can’t express my thoughts – I can feel them there, just below the surface but I can’t grasp onto them, I can’t get them to the surface to get them out.”
And for someone that has spent many, many years of her life with “smart girl” being a large part of her self-identity, it’s disheartening, it’s discouraging, it’s feeling like stupid disease is reaching into every part of my being and pulling pieces away. Nothing is safe from it…at least that’s how it makes me feel.
Yes! I identify. I am a member of Mensa, but for the last several years, while I knew I had cotton mouth, I kept finding it harder to speak–words eluded me! I saw a neurologist, who sent me for neuropsychological testing that quantified my verbal and working memory deficits. Yes, I did have the problems I said I was having, with a large discrepancy between my intelligence scores and the tests of memory and executive function.
I researched online, and found an article in Practical Neurology on “Neuropsychological Impairments In Females with Primary Sjogren’s Syndrome” that explained: “The pSS literature has reported varying degrees of central nervous system involvement in individuals with this condition and secondary cognitive deficits associated with the disease.”
The article continued: “Recognition of individual skill changes can validate patient symptoms and help lower anxiety levels. It should also trigger the development of compensatory strategies for losses (use of visual cues, developing auxiliary memory aides, having supportive family members know how to provide information for best results). Treating clinicians should offer to arrange baseline neuropsychological testing in this group when complaints of verbal skill decline are discussed and avoid discarding these subjective reports as a sign of depression and/or age only. Clinicians can also modify their patient education techniques by providing written material that may reduce the burden of trying to recall what is said at each physician meeting. Concerned family members should be encouraged to accompany patients to the physician visit and ask additional questions as needed.”
It goes on, “In addition, some of these verbal changes may impact work situations and/or family tasks and dynamics. Therefore cognitive remediation therapy may be justified to help Sjogren’s syndrome patients with declining skills remain as functional and productive for as long as possible by learning to make greater use of skills that have remained intact.”
I feel lucky to understand what is happening to me, and why. I used to be quick, but now I am slow. I have to work hard at what used to be easy. I compensate. My family has had to adjust. Writing & editing is easier than speaking, because I can go back to correct and refine what I am trying to say.
Thanks for writing about this!
Thank you so much for the info, Sandra! I’ll be checking that out when I get home this afternoon (headed to the neurologist for the EMG/NCS for neuropathy now!)
Makes me wonder even more if you could benefit from “brain training”…my boys are doing Interactive Metronome right now…rhythm and timing exercises to change the brain and improve sensory functioning. IM Focused (here in Topeka): http://www.trainthebraintofocus.net/
and the parent company (Interactive Metronome): http://www.interactivemetronome.com/
If nothing else, you’ll enjoy reading about it.
PS – I was just talking about my Brain Fog to Corey today…I blame it on my music therapy (that I thought I was done with, but am doing a few more weeks of) and hope it goes away, but I have been really struggling this past month with recalling info and putting my thoughts together. It’s HARD work!
I completely understand the issue you describe. The details of my story are different, but the themes the same. Always the bright one, the multi-tasker, the person who could write, could speak. I ended in computers and software, and worked with some pretty amazing people. My job was a very big part of my identity, though I cherished my family life, too. And as a high achiever, I had pretty high expectations of myself and the quality of my work.
My Sjogren’s onset was relatively sudden, and at age 50, I was suddenly on a medical disability leave. Fatigue was one of my biggest issues, and with it came brain fog. I showed up at doctors’ appointments on the wrong day, I had a hard time writing up a note to send to an insurer. I couldn’t find words (complicated ones like “wheel”), and would lose my train of thought as I was speaking. I would forget things my family told me. Worst of all, I made grammar and spelling mistakes, though I was the go to editor for everyone who knew me.
It was inconsistent, but real. Eventually I had neuro-psychological testing, which confirmed that I had some significant issues in short term memory, and some other areas.
So on to the advice you discuss above, particularly laughing about it. Let me say it this way – it’s too soon for you to laugh about it. You are still confronting the shocking realization that one of your most cherished attributes may be injured. But with time, you will develop coping mechanisms, and since you seem a very practical person, you will find ways to make the best of a situation you don’t like. But one thing you can start on now is letting your husband in on what’s really going on. Over time, sharing this will help.
I can’t “laugh about it” every day, but I can now be more relaxed with my family and close friends. I can smile and say “brain cramp”, and then try to find a different way to say the word I want. And they know to be a bit patient, because I’d rather try to work it out myself. And that is less stressful.
The other thing I did was see a therapist for a while, when it became clear that I wasn’t ever going to be able to work. There were deep feelings of loss – for many years my primary identity was tied up in my job, and I had to make a lot of adjustments, including figuring out what I valued for my future.
Great blog. Thanks for sharing your journey.
Thank you so much for your comments and support! I truly hope to get to the point someday where I can laugh about it!
I do see a therapist – in fact I see her this Thursday and boy will I ever have a lot to talk about! I began seeing her while going through a divorce 4 years ago and my need for working with her has transitioned from that to this in the last few years. It helps immensely and I highly suggest everyone get a great therapist – those with chronic illness and the healthy – the world would be a better place!
I am soooo glad that I ran across your site. I’ve been reading some of your posts and I am immensely grateful that I read this one. I, too, was the ‘top of the class’, blah, blah, blah, high-achiever. The brain fog has become so bad that I don’t think I have had a day without it. I do have a curiosity question. Recently I have had a horrible time trying to type or write without coming up with word-block. I have to re-word sentences to different words just so I can get it written down. My question then is, does this happen to other people too? I find myself so stuck on how to spell a word, finding a different word with a similar meaning, or just typing a completely different word than the one I think I am writing.
In this post so far I have had to change the word ‘grateful’ from writing ‘greatful’ which I know is not a word. I had to look up ‘immensely’ on merriam-webster.com — a site that I just leave open now — because I couldn’t remember how to spell it. I have also typed a completely different word than the one I was trying to type. This last one is happening more and more often.
I find it hard to be an ‘intelligent’ person who is ‘losing my smarts’. That’s how it feels to me. It is extremely frustrating and really wears on my plunging self-image.
If you have time, let me know if I am the only one experiencing these other variations of brain fog.
Thank you so much. I am glad I found your blog!
Yep – I’ve had them, too! I can’t spell correctly, I say the wrong word, I get stuck and can’t finish a thought even though I know it’s in my head – it’s floating around in there somewhere and I just can’t get it to come into focus and come out. I make way, way more typos that I used to – I used to be able to type 90+ words a minute with very few mistakes and now I find myself spending more time hitting the backspace key and correcting mistakes than I ever did before!
Love this! First time finding your blog- and to be honest…I’m having such a foggy day- it took all my energy just to find the tab marked “brain fog” and read it. Comprehend it? That may have to come at a different time..:) You did make me laugh out loud at the suggestions for how to handle brain fog…cause yea, I’ve read a lot of the same ones. And promptly thought they were written by a well meaning, non affected person. I too- was a teacher- special education- and first noticed symptoms when I was in front of my students. My “gift” was that I could get up in front of a group – whether students, or church class, whatever- and just ad lib. But when I realized the non verbal kiddos I was in charge of were communicating better than me……that was my “moment.”
Thank you for opening up this door of communication. Before teaching I was a writer. I lived in NYC and wrote for a magazine- so my husband/friends are dumbfounded when I tell them I literally have no words to describe what’s going on. But this has given me hope that I can fumble my way thru this- Thanks- and all the best!
Really recognise a lot of the elements from your story, although no lupus, I know how it feels when people don’t really take your symptoms seriously, maybe they think you’re just lazy or aloof. The bright side of things is that science seems to start to see a connection now as you describe between inflammation-related and auto-immune diseases and brain fog, which is half the puzzle. For me a low-carb diet, probably less inflammatory, has helped a lot in minimizing brain fog.
I have sjogren’s. And I believe I just drove myself to a flare by training and running a marathon. Yes. I ran a marathon. But at what price? Now the brain fog (which has been under control until this). I’m sending out bad correspondence at work, my notes are all wrong. I can’t do or say the right thing lately. it is terrible. In fact, my boss scheduled a meeting to talk about things for Thursday. Yikes. I’ve made myself some notes on how I can try to better handle things until the fog goes away. I will get there. I will never push myself again to the extreme.
Thank you for this. I really needed it today. I’m a college professor, recently diagnosed with RA (and previously with Hashimoto’s). The fatigue and brain fog are (so far, at least) the worst parts. I have times when I can’t get my head organized enough to write down the things I need to do, never mind hold them in my head. I had intense anxiety today before class, because I couldn’t remember what I was supposed to be doing. (It turned out fine, but only after an hour of panic). Some days, especially by the afternoon, I can’t find words in the midst of a lecture. The anxiety caused by this is probably as much of a problem as the fog itself. I’m sure I wouldn’t test as “cognitively impaired”–but for me and for the work I do, this feels like an impairment. And almost no one seems to understand.
Do any of you mix up your words. Like say them reversed.? Or is it just forgetting words and getting stuck. I have those symptoms also but when I speak to people I frequently mix my words up for example I told someone to put the “pen on the top” when I should have said ” put the top on the pen”. Does this get worse over time? Does it get better? I’m waiting on a diagnosis. Sjogrens has been mentioned along with a few other autoimmune diseases but this brain stuff is driving me crazy because I also have always been very intelligent. Any advice or comments would help me greatly. Thank you all.
your story sounds so familiar. I had the same symptoms. What helped form me is. Lots of anti inflamatory supplements (omega 3, MsM, Kurkuma, ginkgo) , intermittend fasting combined with buttered coffee( eg bulletproof coffee), keto diet. Recently i’ve been looking at the role of lectins in auto immune desease.
What i’ve noticed is that i get a major brainfog from prefab meals and bread.
Hope this helps you as much as it helped me
Thank you so much for sharing your experience! I have honestly thought I must be losing my mind. I just turned 40 last month. I was always the smart one as well as someone who never needed to study with a photographic memory. Now I can’t remember the simplest of things. And then, once I look up the answer (like when my next appointment is scheduled for) I find I can’t retain that info and end up having to look it up repeatedly.
I have yet to be diagnosed with anything though my ANA is positive. (Waiting for a rheumatology appointment) My mother and aunt have RA and Sjogrens.
This is just such a new thing and it is stressing me out. Honestly I thought it must be a tumor or Alzheimer’s. This is pretty scary and I hope I get answers soon.