Brain Fog: Testing Cognitive Dysfunction with Rheumatoid Arthritis / Disease
The last few weeks I’ve been rereading abstracts from the ACR scientific meeting we attended in November. There were many fascinating studies presented, like the tendons investigation on the blog a couple days ago. This one on testing cognitive function jumps out at me:
“The Relationship Between Perceived Cognitive Dysfunction and Objective Neuropsychological Performance in Persons with Rheumatoid Arthritis”
Doctors at the University of California tested 120 people diagnosed with Rheumatoid Arthritis to compare two cognitive measures: First, each patient took a “Perceived Deficit Questionnaire” to assess the level of subjective cognitive impairment (did they feel impaired?). Second, each person completed a “battery of 12 standardized neuropsychological measures” to test the level to which they were actually impaired. The results showed no significant relationship between perceived cognitive dysfunction and performance on the objective neuropsychological test.
However, the researchers did find depression and fatigue associated significantly with perceived cognitive dysfunction.
As with most studies, we not only learn something from these results, but also have new questions.
1) Perhaps people with RA experience cognitive dysfunction or notice mental fog on some days and so rate themselves lower, but still perform well on other days. The patients in the study were tested in a single clinic visit.
2) Perhaps fatigue and depression independently increase cognitive dysfunction. There is likely separate evidence of that, outside of rheumatology. For fun, try typing: “Does depression cause cognitive dysfunction?” into a Google search, or “Does fatigue cause brain fog?” You’ll see that Google reads cognitive dysfunction as a synonym for brain fog… and that there are lots of NIH studies and other articles relating fatigue and depression to cognitive dysfunction.
3) Perhaps something else plays a role, such as medications or pain levels. In addition to depression and fatigue, the study controlled for “gender, race, marital status, income, education, disease duration, and disease severity.” It would be good to have more information, and to have it from the patient point of view. I’d be curious what was used to rate “disease severity” since that measure often differs between RA patients and clinicians (more from an interesting abstract on that topic soon).
Medications are often blamed for any brain fog associated with Rheumatoid Arthritis.
And that makes sense too. Several medications make obvious suspects. This study didn’t separate patients based on medications, so it’s not possible to say whether methotrexate, pain medications, prednisone, nerve meds, sleep meds, or disease modifying treatments play a part.
What do you think? Can you tell whether you have brain fog or what causes it?
Postblog: What is brain fog anyway?
What is brain fog to you? I like that someone is investigating how people diagnosed with RA function mentally – and that they performed well! Severely low thyroid levels once made it impossible for me to even read. Obviously, I recovered with medication. With RA, I’ve only experienced mild short-term memory problems. For me, it does not associate with fatigue, depression, or medication so I still suspect the inflammation itself. We’d love to hear about your experience.
Recommended reading
- Recognizing the Anguish of Depression in Time for Help
- 20 Rheumatoid Arthritis Patient Facts I learned from RA Patients
- Why Rheumatoid Disease Patients Still Fall through the Cracks
- Where the Rubber Meets the Road or What If Only the Cancer in Dave’s Kidneys Was Treated?
Huh?? … just kidding.
I am curious about the test they used to identify impairment. Wouldn’t a test over time be a better quantifier? I might test ok at a given point in time, but I know that I am not as sharp as I used to be. There is a daily ‘fog’ that can happen, but there is also a general ‘fog’ that has grown since the disease first began appearing. Also, does the test deal with typical daily activities?
My response would have read almost exactly like Kelly’s response. I am not nearly as quick-thinking and sharp as I used to be. I often have to stop and think of a particular word I want to use (that really bothers me a lot). I hope they do more intensive research into this issue. Brain fog is a really frustrating symptom of my RA.
The very same with me, Carole! How frustrating to search for words, and use the wrong one frequently… Or just cant htink of the word I’d like to use. And I swear, I’m far from stupid – although I surely sound stupid when people hear me struggle to utter a complete sentence. I wonder too if it is medication-related (I use mtx, Orencia, prednisone, diclofenac in various forms) or did it start with full blown disease? In my case, it also seems to worsen with years of disease.
Brain fog. Yes, I have had it. It was the worse when I was going through chemo. The DR. said they have no research on the effects of chemo on patients that have RA. The fog was so bad That I could not comprehend anything that I read. It took over a year for the chemo to exit my system & for the fog to completely lift. I do not take RA drugs. I use alternative meds.
Hi Gale,
I was a cancer nurse for years and used to always tell the patients about “chemo brain” (brain fog, loss of focus, frustration, etc.)and how it could affect them for a long time after they finished treatment. I’m sure that the effect on any patient receiving chemotherapy would be the same regardless of their diagnosis.
Lisa
I have ra and have been on mtx for about 8 months.
Since taking mtx I have noticed that I do get brain fog.
I seem to want to say something then I forget what
I want to say and I say something else funny and
My kids think its funny.
I was a very high functioning litigation paralegal for over 20 years. About 10 of those years were post-RA diagnosis. I found that, as the pain and disease activity became more severe and aggressive around 6-7 years after diagnosis, the brain fog took over. Tasks that I could handle easily in a day were starting to take several days. I could not remember words that had been part of my daily vocabulary for years or type a legible sentence without spending much energy & thought as to exactly how those words were supposed to connect together. Things that had come so easily to me for so long, became harder & harder to accomplish. Reading and writing for me sucks up so much energy that I can barely get them done these days. I have always felt that the increased and constant, unrelenting pain has been the biggest culprit in causing my brain fog. However, over the past year I’m feeling that there may be a more physiological process going on in the brain that concerns me greatly. I pray that they continue with meaningful research into this aspect of the disease.
I found that the more pain I have the less I am able to think. I not taking pain meds right now and times I have taken them it was just for awhile then stopped taking they did not help much. When I can get a strong enough pain pill, my thinking gets better. I too hope they continue to do research. I wonder if it is doing damage to the brain.
I can relate to so many of you. I have trouble thinking, remembering, concentrating for years now. I was dx with JRA at 18 months, now 50 yrs old. Dr.’s back then did not want to give me meds because I was so young, aspen was given for awhile. In 1992 I started going to Rheums’., given naproxen. Stopped naproxen because I had blood clots and would be taking a blood thinner the rest of my life. Had pain meds off and on. I started MXT in April 2013, it so far has helped with pain the most. But I still have alot of pain. When I can get the pain down with a strong pain med. I can start to think.
I think that if you are fatigued and depressed or both you are going to experience some cognitive dysfunction regardless of whether or not you have RA. What happened to me is beyond being a little forgetful. Reading comprehension is hard, Forming cohesive thoughts is hard. Spelling is hard. Remembering simple words can be hard. Typing is hard. There can be days where I’m not so bad, but I am not myself on any given day. I had a memory that was beyond most – remembering details, smells, what people were wearing, the weather – that has diminished down to where I can’t remember if I took my pills or by getting surprised by the laundry buzzer going off reminded me I put in a load not 20 mins ago. The fatigue is unreal, coupled with the insomnia make me zombie like many a day. I’m currently not on any meds because of a lack of insurance, but when I was on the DMARD’s. the fog was even worse.
My brainfog is horrible. It started when I first started taking MTX. When I increased from 6 mtx pils to 8 mtx pills a week. My daughter in law noticed right away. When I try to back away from the mtx my pain is unbearable.
Lee since you don’t have insurance have you tried to get assistance from the manufacturer of the medication that you need? My first year on Enbrel was paid for by the manufacturer.I also have Graves, Fibro, osteoporosus(sorry) and osteoarthritis and stenosis. Good Luck!
The brain fog is more like an LA smog for me. Some days I can barely put a sentence together. I know what I want to say, I just can’t put my finger on some of the words. Then, of course, there are the memory deficits. Thought it might actually be early onset Alzheimers but my rheumy blames the Prednisone (10 mgs per day). It was a relief to see that other RA sufferers can relate. I’m sure the Methotrexate doesn’t help either!
I was told by two rheumatologist that 7 mg of pred daily would rarely have side effects. I stopped all including MTX and any pred when I began Xeljanz. My cytokines went dramatically to normal. All my blood work Normal. Been on 2xday wonder pill for four months after Humira, Simponi and all others stopped working or did nothing. TOO late for my joint damage but at least I know I am not worsening and no fatigue! I am surprised I am not hearing more about this drug that’s been on market through Pfizer since December
Me too. I am amazed at what I am reading here in this conversation! This is the first time I can completely relate to other RA sufferers. Honestly, so many RA issues vary from one person to the next but these descriptions are so real to me. I’ll be discussing this with my RA doctor next week as well (as long as I can remember!!!)
My specialist does not want me to use any prednisone because of the side effects.
But if it works so good I can have a life. Whats up with that? I may have 10 years to live (am 68) maybe longer, who knows, but if it be enjoyable years why not use prednisone instead of painfull years. The metrotaxate, palaquin may do something but I still have flare ups, including a hospital visit last week for a cortisone injection in my knee as it was totally frozen and painful.
I just dont get it folks.
Some rheumatologists prescribe prednisone more freely and others are very anti-prednisone. Have you told him how you feel about it? It seems you should have some voice in the decision.
Whew…… I was starting to think I was losing my mind!!! I am on Xeljanz and prednisone and I definitely find that my brain is not functioning the way it once did. I have my rheum follow up next week and was planning on discussing it with him….. along with all the rest of the stuff that has been going on.
Not that I am happy when others are suffering but I’m glad to see that I’m not the only one with fog.
I went through an 8 hour battery of tests at the University Hospital. I got the same kind of answers. They controlled for age, sex, education, etc and all my tests came out “average”.
Average?! I was very angry. I have an IQ of 126. I have never been mentally average! (Hey doc, my brain can whip your brain any day – until RA came along). If they don’t have comparisons from before the RA began to affect us, how can they say we have no cognitive dysfunction?
I was running a business and consulting on two others. I remembered passwords five years old for everyone in the office. Now on bad days I can’t remember what you told me two hours ago. And numbers ? Now they come out backwards.
Tell the docs they’d have symptoms of depression, also, if they couldn’t function mentally on the high side anymore.
I am so glad to here you say this. I have lost the whole concept of math. I was a branch manager of a bank for 12 years. This has affected my whole life. If I use my debit card I have to check my balance at the bank I can’t just estimate. My short term memory is gone. I am 60 and I have had RA for 5 years, Fibro for 3. I have no quality of life and my Rheumie doesn’t care. He is older and thinks we are lucky to be out of wheelchairs.
Hi Linda,
If you have an IQ of 126, you’re right, you should be scoring at an equivalent level across the board.
Neuropsychological testing will examine areas like processing speed and memory. If these types of tests are not included in your assessment, then the investigation isn’t as detailed as it should be.
I was a PhD student with a 4.0 GPA on national scholarships and part of a small, national doctoral fellows group prior to RA. I was also a research assistant. I had completed two years of the program. I can no longer work.
Linda I can totally relate! I too have a higher than average IQ, but you’d never know it by talking with me in a professional setting now that I have RA. It’s so incredibly frustrating!
I recently started back on methotrexate 25mg once a week and have definitely noticed a day after mental fog! It’s not a depression. It’s just an “I don’t wanna do anything” fog. I just can’t seem to get moving. I cant even think straight. I get fatigued easily. And it seems to happen the day after I take my weekly dose. I am a nurse and I’m used to getting up and going. This “fog” has really gotten in my way. Thank goodness it only lasts a day.
My brain fogs almost ALWAYS happen when I am overtired, or depressed about something. It seems like, for some reason, I can’t – just cannot – push through it. It’s ridiculous!
This is interesting! I have thought the brain fog is associated with inflammation. I can wake up clear, then the fog and exhaustion descends on me like a Charlie Brown cloud. After a couple of hour afternoon nap, I often awake with no fog, more energy, and less or no discomfort. Well, that is except for the “discomfort” and disability I am used to having twenty-four seven in my hands and wrists. A year ago when I was on no pharmaceutical meds and in severe pain, I was in the fog all the time. I changed my diet over a year ago to a vegan diet to see if that would help. (Dropped my cholesterol 80 points, but no apparent RA impact.) I just stopped taking my 5mg prednisone five days ago, so will be interested to see if that impacts the fog, but I think not. I am on 500mg remicade monthly (which has brought me to merely 50% of my self, up from a year ago) and methotrexate 7.5 mg. Plus a variety of treatments prescribed by my alternative dr. I am perhaps feeling a little better.
Interestingly, after years of losing my words, regularly hitting a wall of fatigue so that I could not think, and my daughters impatiently saying “I told you that already!” I was sent for a neuro-psychology test. It quantified what I knew subjectively. My intellect was still what it had been, but there was a big discrepancy between what would have been expected (what I used to be able to do) and my measured memory and concentration. It’s the discrepancy that is hard to handle. I repeatedly expect to be able to do more than I can, and I am tediously disappointed.
Sandra, I am curious as to how they quantified that and to what they attributed the change? I am the sole income provided for my family. I manage a bank and need to be able to process information quickly and efficiently. There are times now when my brain comes to a full stop. I just become blank and can’t get it started again. I live off of coffee now.
Brain fog is a real problem. I have Ra and fibromyalgia. I find some days I feel clear in the head while other days are a real struggle to function. I have trouble with cooking (left the burner on), I forget what I was saying, spelling words is difficult and especially helping my children with homework, I fumble over simple problems.
I do find I’m worse the first 24hrs after I take methotrexate. Prayer is the only thing that gets me through some days.
Thanks Cheryl, that was what I meant to say, only I couldn’t think of the right words! So frustrating….
You said exactly what I had been wanting to say, but didn’t have the ‘foggiest’ idea of what I meant!
Once again, sloppy research that implicates “its all in their heads” as the only explanation for the outcomes of the study. Good Lord, where do I begin.
OK. Prior to administering neuropsychological tests, one has to determine the purpose of using these measures. In this case, it seems the research question was to determine if what people perceive as their level of cognitive dysfunction correlates with their actual performance on cognitive tests. What is wrong with this approach? It is so easy to see.
First of all, what is the use of a study that shows that how people perceive their skills might not be as accurate as objective measures of their skills? Is this phenomena present among people without RA (normals or controls), too? Isn’t it plain old common sense that we all think we perform worse then we actually do? In ascribing this to only people with RA, we’re once again pathologize a group of people as somehow mentally imbalanced. I get so fed up with this line of research and “findings”.
I would imagine if we examined the questionnaire used in this study to assess if people perceive their cognitive abilities as poor, we’d find the questions biased toward obtaining this outcome.
Secondly, a far more important research question might be to actually investigate if people with RA really do lose cognitive functioning. It would be essential to know the study participants’ level of cognitive functioning prior to diagnosis and at certain stages after diagnosis. I can see why the research wasn’t done this way because it is far more expensive then just giving somebody a bunch of tests post-diagnosis.
If it was important, for some reason, to know about the validity of study participants’ perceptions of their cognitive abilities, then one would correlate findings from the perception questionnaire with actual performance on cognitive tests. Interesting interpretation of findings could then be completed. Do people who had superior cognitive abilities prior to diagnosis who perceive that they have deteriorated actually have evidence of lower scores post-diagnosis? Normal scores don’t mean a thing if there is no comparison to previous abilities. A researcher would also want to know the pre and post medication regime, side effects, and other important demographic information such as presence of learning disabilities, IQ, SES, etc etc…
Somedays I feel like I’m going to tear my hair out when I see such poor quality research that further damages the integrity of people with RA.
I wish everyone a day free of mental fog, difficulties remembering words they want to say, and difficulty processing information. We all know that this disease, as well as the side effects of medications, have had serious yet varying levels of impact on our cognitive functioning.
I’ve been thinking more about the study Kelly was referring to in this post, my personal experience, and posts by others. The findings of this study did show a level of cognitive impairment among people with RA ranging from 8% to 28% of the participants, There is some objective evidence that cognitive impairment exists among people with RA. The researchers did not find that how people view their abilities matches their performance on tests.
Results (partial- from the research study Kelly cited)
The proportion of persons classified as cognitively impaired on each test ranged from 8% (semantic fluency test) to 28% (design fluency test)
Conclusion (from the study):
There was no significant relationship between perceived cognitive dysfunction and objective neuropsychological performance in this cohort. Depression and fatigue were significantly associated with perceived cognitive dysfunction. Findings emphasize the gap between subjective and objective measures of cognitive impairment and the importance of considering psychological factors in the context of cognitive complaints in clinical settings.
As I mentioned earlier, a study that included pre-RA cognitive abilities compared to post-diagnosis would be a far more valuable study. I still don’t get the value of asking people with RA about their perceptions of cognitive impairment, other then to try and prove them right or wrong. It seems rather meaningless.
The conclusion is what is most bothersome. There is an overlay of…. gee if people perceive that they are cognitively impaired, doctors better look at depression or fatigue or other psychological reasons as possible causes. This misses the boat entirely.
Either cognitive impairment post-RA diagnosis exists or it doesn’t. Suggesting that depression or fatigue should be considered focuses on the wrong construct. THE FOCUS OF THIS TYPE OF RESEARCH SHOULD BE ON VALIDATING THAT COGNITIVE IMPAIRMENT EXISTS. If it exists, then what are the biological and physiological mechanisms that cause it? For example, is there an effect on cognitive functioning from systemic inflammation that might involve structures in the brain? I do wonder if depression and fatigue are simply by-products of the RA disease process itself.
Once again, the focus in rheumatology should be on investigating the pathophysiology of RA and treating the disease – not on “its all in their heads”.
………………..
Here’s some reflections on my personal experience of RA and its’ impact on my cognitive abilities. I was at the height of my career when RA hit. For a period of time, I wasn’t able to process information well at all. I also couldn’t finish my sentences, remember words I wanted to say, or always recall what I had said or done. I was also very very slow to process or produce information. The impact on my cognitive functioning was severe. I notice that my cognitive abilities are slowly improving. It is my suspicion that I will never regain the level of cognitive function or mental stamina I had pre-diagnosis. I believe that it is both the disease process itself as well as side effects of medications that contribute to cognitive dysfunction.
The past year, as my disease progressed, brain fog was sitting at my desk in a constant daze trying to figure out what to do. Like others stated what used to take one day was now taking two, as I was double and triple checking my work because I was confused and making mistakes. While speaking on a conference call, mid sentence my mind went blank and I could not finish my sentence.(the only time in my 50 years that I have been speechless)This would then cause me to have panic attacks…the profound fatigue, confusion and memory loss was frightening. My job had become more stressful than before with many of my peers part of 2 layoffs. I was on Humira, Methotrexate, Meloxicam, Zofran, Folic Acid, and Cymbalta. My doctor advised that my body is fighting RA, Sarcoidosis, Constant Pain, Severe Fatigue and Malice and adding the stress from work was just too much! I have been on leave 10 weeks and replaced the methotrexate with Plaquenil 4 weeks ago. (still waiting for it to start working) I still cannot remember if I took my medicine 5 minutes later and I still get stuck mid sentence at times, but my mind is back to going a mile a minute and seems better to me. Fatigue is still a big problem but now I can sleep during the day and I have no job stress. I actually have good days!I believe the methotrexate, fatigue and STRESS contributed and made the brain fog more extreme.
I can so relate to your description of how this impacted work! I am still living that one and hoping to find ways to improve it. My energy, memory issues, and general brain fog started before the meds, before the RA official diagnosis. For a few years everything was blamed on Change of Life!! Hang in there.. I too had to stop the Methotrexate and started Plaq in December. No miracles for me yet but I’m still hopeful we’ll find something. I had 3 Humira injections and had to stop those (evidently allergic) so I’m anxious to see what’s next. I still take 2 or 3 Prednisone doses each day to function and look forward to finding the right combo. Again, hang in there and I hope you continue to do well.
Hi Debbie! Thanks so much for your good wishes I am a recruiter and work from home…My company is about to change our work from home option to working in the office. If/when I go back to work I plan to request accommodations from my Doctor. It will label me as disabled at work but will provide me the option of continuing to work from home and most likely will allow me to start work later in the morning. You may also be able to request things like larger computer screen, ergonomic chair/keyboard/mouse, and footstool under desk to elevate feet/ legs as needed. I bought the 25 inch computer screen and foot stool myself but my company provided all ergonomic workstation. The larger screen has helped me to have 3 or 4 screens up at once and significantly decreased the number of clicks on my mouse.(helped right hand pain some) I would recommend checking into your options on the job. These things helped me the last few years, although, I do not know of any accommodation that can help brain fog, fatigue, malice or memory loss. Praying that you find solutions and relief! Kim
Wow Kim, I could have pretty much written that myself! Other than the part where my rheumy does not acknowledge brain fog/confusion. He doesn’t believe me or think that brain fog is real. Hmmm, forgetting my dads birthday, remembering my sisters but feeling very confused as to whether it was really her birthday or not, turning on the sink and stepping away for a moment only to a little while later hear a sound and be shocked that I have left the sink running, etc., etc. I can really related to what everyone else is saying. I used to remember everything, every little detail, now I am forgetful, confused. Sometimes I will have a decent day, but I am definately not sharp like I used to be.
The problem with Brain Fog questions that I wonder is co-morbidity. I have Fibromyalgia along with the RA (along with several other Autoimmunes along for the ride). There are studies that link memory with Fibromyalgia but not with short term memory problems per se, but rather ability to lodge it in the memory. Our memories are fine; it just takes more thinking about it to make it stick!
This is an important distinction to me and I wonder:
1. Co-morbidity with RA (as I mentioned) and
2. Whether they have tested on not just memory but how we remember i.e. are we having issues with attention as oposed to memory?
I will try to find my background information to support what I’m talking about.
But I wanted to remember before it slipped my mind….
Jennifer
hi Jennifer. Great question. I can’t be certain about this study, but many RA studies exclude people with comorbidities.
This is a definite top issue for me and it years before my actual RA diagnosis. The memory part of it became painfully obvious a couple of years before my RA diagnosis therefore it cannot be attributed to the RA meds I now take. This is a very real problem and affects memory and response times. The severity of the problems vary from day to day and also time of day is an issue. For many many years I’ve been a problem solver & quick thinker in the mornings and not worth a lot in late afternoons and evenings.
I too experience exactly what everyone has said. I know fully what I want to say, correctly, but other word/s come out of my mouth. My family, and friends have noticed, and are somewhat concerned. I get so angry and frustruated, usually in front of the person I’m talking with, when this happens. The speaking issue is different from the memory one. I blame the occasional memory loss from the constant distraction and freting I do over my health. I called a friend in tears the other day because I had heard some important news about her that happened to her months ago, and could not remember her ever telling me that (she did). I was ashamed, but I assume I was highly distracted by a flare/pain/trying to get things accomplished while having RA, that I’m sure when I was on the phone with her, it just never registered in my mind. Lots of important things that people tell me, I don’t ever remember hearing, because I’m so hyper-focused on my issues. Not Good.
As far as the mis-speaking, or using a word different from the one in my mind, and the inability to form coherent sentences, I fully blame that on the mtx. Happened when I upped my dosage. This is the worst part for me, I absolutely lose patience when this happens, wind up using a curse word in the middle of the botched sentence due to being so angry about it. Again, not good…
So,if I understand correctly, they are going to test my cognitive abilities and tell me whether or not I have experienced a decline as a result of my disease without having any pre-disease testing to compare it to. Hmmm.
I can guarantee you that I have some sort of brain fog or whatever you want to call it. I have difficulty spelling simple words, names and words escape me, my memory is unreliable. It’s bad enough that some of my fellow employees tease me some but not so bad that they think I have Alzheimer’s; at least not yet. There are times when I struggle though.
No actual cognitive decline? I call bull on that conclusion.
I can say that I know for a fact medications were not the cause of brain fog for me. A year and a half ago I wasn’t on any medications. But along with the pain I had, which increased exponentially, so had the brain fog. I began to think I was losing it. I couldn’t remember rules I knew at work the day before and worse and worse it became. My boss questioned my performance, where I had always gone up with promotions now I could hardly think through my job. It’s so severe now that I can’t type except with one finger, lol so this is slow going. However this validates everything I thought only I was experiencing things I thought I was creating in my head. I get the support I have only from this site. Thank God for this site.
[rubbing my hands together with glee] Okay, THIS is something I have some REAL insight into!
Before I became an RA Warrior, I was (and still am) a wobbler. What’s a wobbler? We’re people whose vestibular systems, the inner ear, have been destroyed by one cause or another, or for no known reason — I’m a victim of gentamicin ototoxicity, a $5 word that means “gentamicin is REALLY NOT GOOD for the inner ear!”
There are tiny little cells inside the cochlea of the inner ear, called hair cells because each cell grows a miniscule hair. These hairs detect movement of a fluid in the semicircular canals (the cochlea) and transmits information through the 8th cranial nerve to the brain, telling it what position the head is in. This is essentially what gives you your sense of balance.
In wobblers, these hair cells have been destroyed, and so we no longer have an inherent sense of balance. Sometimes both ears are affected, sometimes just one — I have both ears affected, so I’m bilateral. I have no activity from my hair cells, so I’m 100% bilateral. The whole condition is called vestibulopathy.
Anyway, we wobblers have to use up so much of our conscious mind keeping our balance, not falling over, not falling backwards or forwards, actually getting what we’re reaching for, and interpreting the things we see around us, that we don’t have a lot of brainpower left over for other things, like keeping track of a plot in a movie or TV show or book, remembering what we want to get at the store, or whether we made the power payment this month.
Plus we get really tired easily — it’s a lot of work trying to keep your balance while walking, sitting, reaching down for something you dropped, getting up from a seated position, getting into a car, lying down on the bed — pretty much doing anything.
And what’s a side effect of being so tired and of having very little conscious brain left over for anything else? Cognitive dysfunction! It’s even a genuine sequela of vestibular loss.
So IMO cognitive loss in RA patients is not surprising — the pain and doing things in spite of it, the medication to make the pain bearable, and the medications to put the condition into remission all could contribute to cognitive dysfunction, not just depression and fatigue. I’ve found I’m even more affected cognitively with the RA, especially when it’s flaring. Yesterday I took a friend to the store and got some stuff at a drive-through, then blithely drove off without the change!
Yeah, cognitive dysfunction and RA — definitely a correlation there.
Brain fog — I have it. I’m just used to it because of my vestibulopathy, so I don’t really notice if it’s all that much worse (except for driving off without my change, like I said in the above post).
But it’s very real, and very frustrating. What I’ve found is to do stuff that requires mental acuity first thing, and leave the more automatic, don’t have to think about it stuff for later in the day. Make lists. Make notes for yourself. Mark a calendar. Don’t trust anything to memory anymore — your short term memory is shot.
You’ll also need to find other ways to do things you want to do. I have peculiar ways of measuring and cutting things that completely baffle my husband, but it works for me. Doing work in my garden confuses him too — like today, I was putting some topsoil out, and so I laid out each bag, then I cut them all open, then I emptied them all out, and finally I raked the topsoil out smooth. He’d have done it bag by bag, but my way worked for me, and didn’t cause me much pain.
It’s a strategy that might help those of you who’ve never had the brain fog before. Rethink everything you do, and make it easy for your mind and your joints.
As always, I come here to read and end up feeling reassured by all of you—I am NOT CRAZY for thinking my brain isn’t the same as it was pre-RA. Many of you are experiencing the same symptoms as I. I worked in a bookstore for more than ten years, and had committed thousands of titles and authors to memory. Then I studied botany and memorized latin plant names. For all intent and purposes, I have always had a great memory. And then stress broke my immune system and my brain, and now I’m different. My rheumatologist will not discuss any of these things with me, tells me to lose weight and go on antidepressants, squeezes my hands and sends me on my way. Absurd and if I weren’t so frustrated, it could be laughable. I’ve got “good control” of my RA he says. My brain doesn’t work, some days I can barely open my own car door, and I’ve got pain in almost every part of my body. Good control. Uh, sure. Sounds like we all do.
I agree with Sally on the usefulness of these types of tests. I agree with Lorrie, the Wobbleir. I sometimes need to concentrate on not falling over, and I have more troulbe with my memory when I am tired. Had some very embarrassing things happen. Good grief.
I suffered from a severe bout of brain fog this past December… It was like I had lost half of my brain for an entire month! Those closest to me noticed it too (I had crazy slow reaction times, my energy level was at a constant low, and my attention got wrapped up in the littlest of things!). I’m unsure of what cleared it up; perhaps it was a change in medication or routine switch up? All I know is I never want to experience that deep of a fog again!
I’m definitely going to read up on those studies, and I’m also thankful that research is being done on the subject, since brain fog is a very real thing!!!
I’m not as sharp as I used to be either. It feels as though my brain constantly runs on 85% capacity – I call it the “dumb factor”. It is definitely not my imagination either as I can see it in my work outputs. I make stupid mistakes — something which NEVER would have happened in the past. (I can physically feel that my brain cannot think any harder, although it should be able to.)
My RA is well under control and pain is minimal, however, the “dumb factor” doesn’t go away. My Rheumy says it is the Methotrexate’s fault (he decreased my dose and added Sulfasalazine to try and assist me).
Then there is the brain fog which comes and goes – sometimes I cannot even remember my name and other times I feel good at the 85%. I link it to fatigue, not depression, ‘cos I can be as happy and relaxed as ever, but still feel a thoroughly fogged up 🙂 .
I’ve learnt to leave difficult assignments for days when the fog is gone – in order to manage my work.
I believe that the “Brain Fog” happens to me when I am having a bad RA day. On these days I have to take additional pain meds or muscle relaxers. I also have noticed that you not ask me any import questions first thing in the morning. I seem to be slower in the thimking department and is usually after a flare.
5 years ago I got uterine cancer and I had to take chemo a lot stronger than the mtx I’m taking now. I ended up with chemo brain. There is a book written about. It’s sounds just the same as brain fog. I would also go blank and couldn’t think of the right words, my balance was also affected. I got better over time. Now that I’m on mtx chemo brain coming back.I’ve also been told I shouldn’t take biologics post cancer. I’m considered cancer free now. Does anyone know what I can take besides mtx? When I first found rawarior it has helped so much. I’ve had ra 5 months, it was very aggressive
Sandra, ask your doctor about other dmards – that can be added to or substituted for the mtx. Mtx works on the most people with the least side effects, so it’s the firstline. Also there is a new dmard that is not a biologic – you can read more about it here: https://www.rawarrior.com/tag/xeljanz-tofacitinib-jak/
Good luck.
I just changed from Humira to Simponi 2 months ago, I have had severe brain fog since the change. It seems to be lifting a bit. I have had a few good days recently. I can attest to it being a real thing.
I think this is another one of those things where the establishment want to quantify it and generalize it for the autoimmune population, but will actually be so individualized as to be difficult to pin down to specifics. Additional outside factors should also be included such as diet and/or allergies, especially since these can either deplete or block absorption of important vitamins and minerals.
For me, the fog comes and goes, much like disease activity and depression. The really bad days are a perfect tri-fecta that combines them all and renders me useless. However, more generally it is a pernicious confusion that makes it hard to read for more than five or ten minutes at a time, certainly hard to read technical materials, or that makes it hard for me to process a substantial amount of information such as different options at the dentist or auto mechanic, that makes it hard for me to figure out how to drive from point a to point b but only on certain days, one that makes me forget what I am supposed to be doing over and over and over again. These things occur randomly so that it is hard to explain to physicians and in fact going to the doctor is a really bad time for fog – but that happens too. Fun. And as we many of us are aging females, we have to combat stereotypes just to get anyone to listen. Being 49 means this is just me getting older, according to several physicians. But….my brain fog started when I was in my 30’s. Then that means it must have been being over worked since I was a homeschooling mom with three (gasp) kids at home. Or maybe I am just fat. I have heard it all… but I am hopeful since we are having this conversation!
should have said:
Additional outside factors should also be included such as diet and/or allergies AS WELL AS MEDS, especially since these can either deplete or block absorption of important vitamins and minerals.
I think brain fog is a real thing, and further I agree that inflammation is the culprit. I have good and bad days and just like my pain and stiffness fluctuate day to day so does my ability to think. On good days I’m pretty much as sharp as I’ve always been, for instance today is a good day (YAY!) and I’m able to type as quickly as I always have and make sense. However on a bad day, when I wake up feeling like I’m moving through wet cement with every step, my mind functions the same way. Everything just slows down and I can’t do things very well, it’s like my brain is as stiff and unable to move as my limbs.
While I do not have the “before RA” results, my working memory and processing speed used to be in line with my intelligence. Today, everyday is an adventure. I do not know how much pain I will have or what I will be able to do. I am slow to recognize that my short-temperateness is due to pain, or that I am not thinking clearly until later. I have lost confidence in my abilities, which I used to take for granted.
Here’s how it was listed on my neuro-psych report: “Performance on the Verbal Comprehension Index (VCI = 138) and the Perceptual Reasoning Index (PRI = 138) was in the very superior range. Performance on the Working Memory Index (WMI = 100) was in the average range, significantly lower than performance on the VCI (discrepancy occurs in 1.0 percent of the population) and the PRI (discrepancy occurs in 2.0 percent of the population). Performance on the Processing Speed Index (PSI = 105) was in the average range, significantly lower than the VCI (discrepancy occurs in 4.0 percent of the population) and the PRI (discrepancy occurs in 11.5 percent of the population).”
Also from the report: “Etiology of impairments is likely multi-factorial in nature, including metabolic syndrome (diabetes, hypertension, high cholesterol), rheumatoid arthritis, fibromyalgia, depression, and use of multiple medications.”
Thanks so much, Sandra. Very interesting. The study discussed in the blog did not give all of those scores (memory & speed) so I wonder if the patients were tested in those parameters too.
I’ve been “diagnosed” with RA since 2009 but have had symptoms since I was a child. The RA brain fog has probably been going on for a year but started off slowely. First I would stumble over my words when I answered the phone at work, almost like being intoxicated, you just kind of slur the words together or talking real slow to be sure I said the right thing.
Then I started noticing things like mixing up words that are similar or started with the same letter.I work in surgery as a surgical tech in labor and delivery, I only do one kind of surgery; c-sections. We had an emergency come up and so we were all in a hurry. I had two disposable light handle covers and I hung up one. Then I got the surgeon dressed, looked at my table and noticed I only had one handle cover there. My brain insisted that I had dropped one of them on the floor and therefore needed to ask my circulating nurse to open a new pack for me. I asked her three times for “knife handles” and could not figure out for the life of me why she didn’t understand me. I finally figured it out that I was saying knife instead of light handles. At the end of the case when I was cleaning up I noticed that I had four handles and couldn’t remember that I had put one up earlier then asked her to open two more. I just stood there staring at those four handles and wondering why I had double. I have been doing these cases for 6 years, I can open a case and be ready to go in three minutes but I can’t remember putting up one light? I do probably 200 c-sections or more a year. I’m also finding that when a doctor asks me for a instrument it takes me longer to find the right one, and I have to look at my instruments and really think about what he’s asking for. If they start with the same letter or sound similar i’m getting them confused.
I’ve been told by my rhuemy that I’m just stressed and depressed and that my body is in a fight or flight mode. He is though sending me in for a brain MRI just to be sure and recommended that I see a therapist to deal with the stress. But until then how scary is that? I have to keep my job for insuring the family, but at what point do you begin to question whether your safe to even do your job?
I was recently diagnosed with a cognitive disorder too
I’m not as sharp as I used to be either
Hi…my son is almost 12 and he has juvenile Sondyloarthritis with enthesitis. He takes .60ml MTX and 500mg every 3 weeks of remicade. Yah, he’s got the brain fog! It’s terrible for him. Thank goodness I homeschool. There are days that he can’t even read or can’t get what he wants to say out. I have the same thing as my son, just recently diagnosed and take 1ml of MTX holding off of Humira until we get back from NIH (AS Study). there are some days that I lose my thought process and I have told people that I have a hard time with words. I have Hashimotos as well but mymeds are fine with that. Deff a change in thinking with the MTX but I wonder if there is inflammation in the brain?.. When Bruce is on prednisone for his UC (yes he has that too) he is as sharp as a tack! Very focused…it really made me wonder…yes the prednisone was making him feel better but which one is it. Fatigue is always there for him as well as stiffness or is it the MTX? is there inflammation in brain? I am going to talk to the Drs at NIH. We leave on Monday. This is Bruces 2nd visit and my first. We know MTX causes the fog..but could it be something else added to it. He has not been on prednisone since last year. It’s not a reg. drug for him due to him getting glaucoma. So we avoid but it sure does make a difference
Hi Beth, good luck at NIH next week. I hope you get more information that will help you. Thanks for sharing.
I find on the days when my RA pain is the worst and most nagging is when my mind is not as sharp as usual and I do feel like I am in a fog. I am fully aware of it but can’t do anything about it.
Testing does no good without a baseline measurement from before illness. My checkbook hasn’t balanced correctly for months, and I have made a couple of huge copy editing mistakes at work. I get words mixed up or can’t bring up the word I want. I suppose many people would never notice the proofreading mistakes, but they never would have gotten past me a year and a half ago.
Hi Anne.
I’ve enjoyed reading your posts, Anne. I’m sorry to hear the cognitive challenges and can relate.
I’m thinking that a good cognitive diagnostician would look at both subjective and objective evidence. It would be ideal to have pre-testing but that isn’t always possible and isn’t really mandatory in obtaining a snapshot of current functioning The person’s report of changes in cognitive functioning should be part of the information collected in the diagnostic work-up. During the assessment, how the person performs – including any frustrations with cognitive tasks, should be noted. The test scores aren’t everything
: )
I’ve noticed that neuropsychologists in private practice often will provide a much more in-depth assessment then there is time for in a public agency.
Anne, That’s one of the things I’m dealing with so much these days (for a couple of years) and it gets worse every week. Short term memory issues are a big problem, I can’t catch my own mistakes in proofreading, I completely miss words in my emails, and regularly cannot finds words when I’m speaking. Basic Math is a now a joke without a calculator. Until I started reading this particular topic earlier in the week, I sometimes worried if I was dealing with early onset Alzheimer’s. I have never needed help with spelling but these days I regularly have to look up words. There are so many emotions that are impacted by this but I have to say that I’m very relieved to know it isn’t something seperate from all of the other RA issues and I’m anxious to discuss it my my RA doctor next week.
I can relate. I have RD, Fibromyalgia and Chronic Fatigue Syndrome. There have been days that I could not finish my own sentences because I would forget what word came next, I would type the wrong word or transpose the letters. I could not proofread work and I would transpose numbers or say the wrong word or number. My short term memory is shot. Sometimes at work I sat there in a daze wondering what to do next. I know what to do it just does not register sometimes. I am on mtx n just was informed I got approved for Humira because my disease is progressively getting worse. On bad days the brain fog is worse. Hope someone figures this out before I lose my job. Don’t think new bosses wife understands, she is one of those that says oh arthritis I got that to in my neck, I take aspirin n I feel better. The ole bosses understood. completely cause they knew me before this all took affect n they knew something was wrong.
Wow I just read this after posting my own comment and it’s as if you painted a window into me and all I go thru on a daily basis. My bosses too know how I was before so there is a level of understanding there. I get so discouraged when I can’t “find” a word or finish a sentence. It’s horrific really! And to be on the phone with customers a lot and get stumped while talking to someone who is angry and then I feel like I come accross as an idiot…ya know? (Plus I work in the car industry so it is really easy to forget words like “timing belts, spark plugs, power steering, transmission” etc. Anyway just wanted to say hello and that you are not alone…same thing happening here. I will keep you in my prayers and pray the boss’ wife will leave you be or find some understanding. God Bless <3
rawarrior Kelly I’ve NOT forgotten my song to honor #RHEUM! Since our Boston TRAGEDY I’ve not tweeted LINKS. ThU 4 checking on me!XO
I suffer with this & it’s bad enough it actually embarrasses me. I have always been an intelligent person, however lately I find myself having to resort to toddler shenanigans by pointing to the object I’m trying to name & even calling it a “thingy” when it’s something that has been in my vocabulary zince childhood (ex: coffee table). I am in customer relations at work & my worst nightmare is being in the middle of a conversation & losing my words. It’s as though something misfires up there. I am in pain every day to some degree & to be honest I’d rather keep dealing with that pain every day (which is never lower than a 5/6 on the 1-10 pain scale) than keep having lapses in my memory & keep forgetting words in the middle of a conversation. It’s truly something that bothers me deeply.
Let me add I have RA, fibro, & am being tested for Lupus as well.
In addition to the above…I suddenly am unable to spell words as well as I used to & my short term memory, I feel, is gone. I have to write everything down at work or I’ll forget….& I used to be known for my memory being awesome. Ugh. Such a sad/sore topic for me, but happy to share if it’ll generate more research & help someone. God bless guys!!
well I have to post, to inform all of you, that I dont believe its your meds, you are all taking. I have had Ra since I was in my teens, but have only been diagnosed within the last 5 years, I will be 33 in May. I have never taken anything besides tylenol or even IB Profen for pain, as I cannot get a doctor to prescribe me anything else as my results dont show what I actually feel. I have had one result say my Ra was mild and the rest of the results were either negative, or didnt show anything at all. I get brain fog very often, and cannot shake it sometimes. To a point where even my vision makes the world around me hazy, like im in a dream. It can be very disconcerting and even scary. Yet all my vision tests, say I have perfect vision. These foggy days and even evenings, have not been lack of sleep induced or stress induced, they just come on a whim. I have to agree that having a quick short nap can and does help with lifting the veil of fog, for a short time. Though I have to say, having a 5 and an 8 year old, napping is not an option that i have. Besides being a homemaker, should i nap for any length of time during the day, i feel like i have wasted the day away, and feel guilty for napping, when i could have been doing other house hold chores or quilting.
I have never napped during a day in my life, except for those days when the fog heavily clouds my mind and vision, and i cannot function. Call it a product of the Fibro I also have, if you may. Now, memory speaking, My husband would tell you i have non. The way he talks I have the beginnings of early on Alzheimers. It can be very frustrating, not just for him, but for myself as well. Sometimes I wonder if im losing it. Making verbal blunders often, can also be very embarrassing. My kids and husband constantly catch me at it as well. It sometimes scares me to wonder if Ra is shutting down my brain cells. I just wish…….sigh….so much to wish for, yet the words fail me to speak them.
Very interesting. Just had a very similar discussion with my mother about my 93 year old grandmother. Is it age? Pain? Fatigue & depression? Medications? Why are some days better than others? And which doctor can help us sort it out!? The worst is having thyroid issues along with RA. Several months ago I felt I could not think straight or hold a thought in my mind, let alone something important like a to-do list. Felt like when I was diagnosed with Hashimotos but found out it was a B12 deficiency.
I believe I have impaired memory especially when my disease is flaring and I have a lot of inflammation. I work as an advertising consultant for a newspaper – very detailed job. Sometimes I worry that I will not be able to keep track of everything. I’m 57 and have had the illness since my early 40’s.
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I started experiencing brain fog, along with other RA symptoms, a few months before being diagnosed with RA and I was not on any type of medication at that time. Presently Methotraxate has controlled the majority of my RA symptoms except the brain fog. for me RA has destroyed my mind. I forget things so easily and have a difficult time concentrating…and I don’t think its age.
The worst brain fog I had was when I started taking MTX and for the next two weeks or so. I was never more exhausted or useless in my life, couldn’t function or remember anything. And then a month or so ago I realized that I had no recollection of things that people had told me. Having always had a very good memory this caused me great concern, but I had also been overdoing way to often and was quite tired so I guess I shouldn’t be surprised. I have always been bad with names but am even forgetting names of people I have known for a number of years unless I spend time thinking and figuring out their name. I also seem to forget words, simple everyday words, a bad thing when you spend a lot of the day talking to people and time presenting data and information to management.
Medication is not a major player in Brain Fog. By choice, I am not on medication for RA, but has the detrimental effects from the disease. Brain Fog does exist without medication.
Yes, I agree Carmen.
Found this link which has been interesting to read. My 15 year old son is taking Naproxen, MTX, and HUMIRA for JIA. He was diagnosed 2 years ago after a year of severe pain and looking back probably had symptoms years before. Recently we had cognitive testing redone (needs to be done every three years to receive accommodations at school for a learning disability he has) and found a drop in his scores, including overall IQ. (For those of you mentioning needing testing prior to disease and treatment, I have two previous test year results for him that were both higher and consistent with each other; test results from 3 years ago and 8 years ago). He has only been on the HUMIRA for <6 months but sees great improvement in what he is able to do on it. Don't want to take him off medicine that is helping him, but I am also concerned of causing him other cognitive problems. He hasn't mentioned he feels different on the meds/"brain fog" (though he does feel crappy the day after his MTX shot), but since he has always dealt with a learning disability that requires him to put in a lot of extra effort, he may not be aware.
I think it all depends. I lost almost a year of my memory taking a drug called Lyrica before they figured out I had both RA and Fibromyalgia. I am alot slower figuring things out alot of the time or find myself just starring blankly. I have fatigue but not depression. Its much worse during flares but always present.
Sorry…I am very bad at talking and at the slightest interruption I forget what the whold conversation was about!