Study: Cognitive Dysfunction in Fibromyalgia

The pain and fatigue are bad enough on their own. But the anxiety and cognitive issues are what knocked me out of the rat race (and a job that I had, at one time, been pretty good at and paid quite well). This is…validating, I think. It’ll take a while to process, but thanks for sharing the info in a way I can understand.

Short-term auditory/verbal memory (hearing and repeating)
Rate of learning
Ability to infer information
Confusion in memory processes
Retention
Differences between learning information and being able to retrieve it
I have all this, I cannot retain new data, and I can’t remember things from my past or what I do day to day, or what I’ve said to whom. I’m always repeating myself and it’s annoying. I also have bipolar disorder and shiczo affective disorder, I don’t know how much that plays a role in my dissipating memory either. I’m glad they are finally recognizing this part of our illness.

So, you have bi-polar disorder AND schizo-affective disorder AND fibro-missuggana?

AND YOU DO NOT THINK FIBRO IS A PSYCHIATRIC ILLNESS?

Is there ANYONE with fibro-missuggana who doesn’t have a co-existing mental illness?

It is, obviously, all in your diseased mind.

What’s wrong…aren’t you getting ENOUGH attention, so you have to make yourself (because no one else believes you, you know) believe that you have al these little ouchies and aches and pains.

When I hear “My fibro..” I visualize an overweight, lonely, sexually-frustrated, homely peri-menopausal woman who has been on anti-depressants for decades.

We, the medical professionals, cast you off as looneys who have nothing better to do than MOAN..l.and you fibros sure can moan….”OOOhhhh, MY Fibro!!.

They willl not ever get well because they do not want to get well. Their entire self-concept is based upon attention seeking. When everyone is sick of the complaining about the depression (bi-polar, schizo-affective disorder), they somatize (remember THAT work, fibro-missugganas) and hope that people will take their mental complaints seriously because they now are physical….NOT!

Andrew is an absolute retard. You will never understand, because you don’t live with it everyday. I have had people tell me I have “died” due to this disease. My personality was sucked out of me and my cognitive function has been in peril.

The problem with people in the medical community is they think they are know-it-all’s but then can’t even think outside the box when thousands of people have been suffering with this.

I am a male and it is daunting to be reminded of when I could read a book and recite it like nothing, I have it medically documented that all of a sudden, out of nowhere, my left eye slightly turns inward now, when my eye doctor said it never happened before age 18. Chew on that, d-bag.

Fortunately I have a crap paying job and a girlfriend to help support me, but it is a lonely, painful life ahead. I’m not asking for sympathy, just reiterating facts.

Until you have your cognitive function affected you will never understand. Way to waste your medical degree. Loser.

I’m right there with Kathy. The pain and fatigue were (and are) a big issue, but what hit me the most, and what I really couldn’t get people to understand, was the cognitive part. Just a few years ago I was known for my memory and retention capabilities. It was part of what made me so good at my job. When I was no longer able to remember the name of a student I had been working with for 3 years, I knew that my fibromyalgia was going to mean some major changes for my life.

I have dealt with this for years. It’s encouraging to know that drs r finally looking further into this problem.

I have begun the process of filing for disability for these very reasons. Thank you for validating in writing what I have known for years. My empathies and gentle hugs to all who are affected by this illness.

This just proves to people what I already knew. Back in the mid 90′s I read that fibro ages the brain 20yrs. The twin study in Seattle WA on CFS/FM showed we have a brain but it was malfunctioning in the sick twin. Shown both on EEG and memory tests. I wasted several hours at Dr. Rainwater’s office who gave me 5hrs of testing about 2 or 3 yrs apart and would not give me the results of those tests without charging me $300 for the results. He is in Florence SC I DO NOT RECOMMEND him at all. It burns me up that he is sitting on very valuable information and thinks I just have a little anxiety! He needs to go back to school and learn a few things about fibro. I need to get a neurologist! My memory is worse now than it was back in the mid 90′s and I read in recent yrs that a study showed that people with fibro have brain shrinkage in parts of our brains.

Really, do other fibro-folks agree that you have “brain shrinkage in parts of our brains.”?

If you are quoting a study, it is considered the proper thing to cite the study, or, is just you thinking that this is true enough?

Fibro-folks seem to exist with “magical thinking” ie- if I think fibro is an auto-immune disease, then it is.

If I think that my brain is shrinking because of fibro, than it is.

Magical thinking is a sign of schizophrenia.

CITE YOUR SOURCES!

I was only diagnosed early this year and have to say it was like a weight was lifted off my shoulders. I had seen a neurologist who tested me for MS and when it turned out not to be that he then started talking anxiety. I knew for the last 10 or so years that something wasn’t right and had been going to doctors for years with back pain, weight gain, fluid retention, fatigue, eye and ear probs, weakness on my left side, feeling like things were crawling on me every time I tried to sleep etc as well as wondering if I was getting altzheimers or something as was forgetting things all the time. I am glad the word is getting out there finally about fibro and the way it affects your brain. The more people are made aware of it the less we will be made to feel like hypochondriacs and fakers.

gladys states, “The more people are made aware of it the less we will be made to feel like hypochondriacs and fakers.”

Not fakers, but mentally ill with somaticism disorder.

I have problems aplenty! I get my words muddled up, things just don’t sink in, I am always forgetting to order my Tablets, even when I do remember I forget to pick them up!
I used to love reading but now I totally forget what I have read the night before the list goes on.
Since I went off sick in May due to not being able to do my job. My Doctors have continually said I was depressed and put me on anti depressants I had a battle with my Doctors. I was originally told 5 years ago I had Fibro. In the end I had to go privately to a Specialist in London who informed me I have Fibro and CFS.(It took me 5 days before I could even get dressed afterwards I am still not over the long journey I had to do to get proof) He did write a letter to my Doctors who now will hopefully understand what it is I have. Why do we always have to battle with disbelievers? Hugs to all who understand. x

Sheila, I could no longer read stories. I was unable to retain information, like whos who, or what I read the day before. Now getting the right treatment I can read again. I was a person who got things done right and done on time at work. What once took me an hour can now take me several hours. My mind changed to not remembering what I was doing from one minute to the next. I have had people think I was lying or being Mean. Lost a lot of trust when I tell people one thing and do not recall saying it. Like “sure you can have the day off”. As a person who takes pride paying bills on time it becomes very emotional when I forget to pay something. I am not irresponsible, but forgetting payments gives that perception. I developed a file system of index cards which I can to rely on more than my memory. It can be a big challenge to maintain confidence when your mind loses ability. But on the bright side, I can watch one movie several times, and still not what the ending is going to be.

I have suffered from Fibro for years, not knowing the what or why until being diagnosed one and a half years ago. I have tried meds, anti-inflammatories, pain meds, anti-anxiety/anti-depressants, and the list goes on. Upon being referred by a Health Food store owner who really knows her stuff, I went to a Chiropractor that specializes in Bio-Cranial Therapy. I began going three times a week, and slowly tapered off to as needed. This therapy has GREATLY improved my health, pain level, tension, foggy feeling and overall well-being. If you can find someone in your area who specializes in this therapy – GO. It is not painful. I saw a major improvement after the first visit. I have found that going often makes me feel great, but my insurance doesn’t cover that many visits….so you know the rest of the story. I hope this helps someone who is feeling as desperate I once felt. It was a leap of faith, but it works. And NO MEDICATIONS was a huge plus for me! Best Wishes!!

One thing that really irks me in regard to mental capacity testing, is that the medical practitioners aren’t always careful to take into account education level and the like. So for example, I have 2 master’s degrees and to compare me to high school graduates would make me look pretty good. But to compare me to someone with a similar background as myself or even to compare my current mental capacity with how I used to be / what I used to be able to do, shows that fibromyalgia has affected my mental abilities. Doctors are supposed to do these things, but they don’t always make correct comparisons.

Well big hugs to everyone and having said that I have to tell you that my name is Joe, and yes I’m a male with fibromyalgia. WhenI first started telling people that I had been diagnosed with this disease, I was looked upon like I was weird or something because men do not get fibro.

Well I took a big breath pumped up my chest and said like any machmo man would say, back off buddy or you might hurt me.HaHa! One of you ladies had commented that you felt creepy crawly things,well I not only feel them I see them, but of course when I turn around to look at them they disappear. I asked many questions and was told that they were illusions caused by medications. I was comforted with that answer for awhile. But I quit taking a lot of my meds and guess what I still see these little pesty movements out of the corner of my eyes.

I’m scheduled to see a Neurologist next month so I’m hoping that he will tell me the truth and I’m not flipping out.

The pain is incredible in my legs,hands,fingers,feet,calves,wrist and to add to this I also have spinal stenosis. I do have a lump in my head thats bothering me,it feels like somebody hit me in the head with a a bat or something. If I survive the visit I will bring you all up-todate.

As a child of the 1950s I was labeled an “under-achiever” — whatever that was and it wasn’t good. Carried the message that I wasn’t trying enough, wasn’t focused enough. Never did well on standardized testing. Was also physically “slow”. Didn’t like sports, never participated and no one ever wanted me on their reams. My self concept suffered terribly.

I did okay through graduate school — but it was rough and there was some areas to this day — mathematical concepts, statistics, I can grasp at all. Through the years I developed coping skills — writing everything down. or I wouldn’t remember conversations, what transpired during conferences.

In spike of all I was able to succeed at a high level of government work earning awards and recognition. But it has only been reasonable that there has been some kind of validation that there was something wrong in my brain processing — and that I personally was not to be blamed. I was finally diagnosed with Fibromylgia at about 2005 at about 55 years of age.

My request for reasonable accommodation was refused by the agency and they turned around and retaliated against me. The judge allowed us to go forward on the retaliation complaint which was lost to the government; we then appealed the case requesting a jury trial. and again they ruled on the part of the government. This in spite of the judges having over stepped their roles and ruling on disputes of fact.

I am now living on disability from the Federal Government and Social Security.

Oh, yes. This is why I lost my job as well. I would find myself staring at the wall, in a panic, not knowing what I was doing, and afraid my supervisor would come up behind me and ask what I was doing. It was terrifying. I had neuropsyche testing done and it showed that I was really trying hard, but that I had trouble processing and focusing. They thought it was a result of a drug I was prescribed. So, I went off the drug. Well it never went away and the memory stuff got worse, inability to focus got worse, and processing got slower. It probably helped with disability, but I had so much other documented medical evidence that I cannot be sure. I’ve been living on disability for at least 10 years now. I was able to get out of the first 2 years of debilitating depression with the help of a wonderful therapist, who helped me find reason to live. I’m thankful for every good day or hour that I have now. When it’s bad, I disconnect from everyone and stay at home on the sofa for as long as it takes to reach that next good day or hour. With love…

This information is very encouraging, as I too have cognitive impairment, along with fibromyalgia. I am so glad to learn that neurologists are treating this disorder, rather than psychologists and rheumatologists. I find that natural solutions are best, as tai chi, reflexology, good diet, reducing stress, pacing myself, are helpful most of the time.

you bet this is encouraging! everything they said, i can relate to. i too once had a demanding job, working in an accounting department. now my checkbook is about all i am up to balancing. i’m scared of dementia/alzheimers disease. i am losing so much of my brain function i used to take for granted. and i loved to read. still do, but i have to read each sentence as many as 3 times at times. it just doesn’t seem to ‘sink in’ anymore.

First, I want to say to Debbie that I commend you for following your case through as you did. From experience, I know it had to be very tough. My situation was similar in some ways; different in a few. I requested (and was granted) Reasonable Accommodations. But, at the time, I thought my inability to concentrate (in a noisy, high-traffic area) was due to a mental disorder. Unfortunately, I had to make that declaration to my organization (knowing I was taking a chance at losing a high-level security clearance). After my request was granted, my supervisor retaliated against me and I filed against the government. My case was accepted. However, the extreme stress of the case led me to drop it…though MANY people thought I had a very good case. (You and I know that’s what they want us to do. Drop it and go away!) Though I kept my job, I was moved to another position and had a measly 70 hours of sick leave returned to me. (I had requested that I be able to keep my current position and work area and that my position be reassigned to another supervisor. I further requested that my supervisor be relieved of her supervisory position.) In the end, I guess I am in a better “position”. My job is less stressful and I’ve left that toxic environment (under that supervisor). For as many years as I can remember, I’ve had difficulty with reading. In school, I always tested low on reading comprehension. I tested well on everything else. My retention is horrible. I no longer read because it seems pointless. It takes too long and I have to re-read everything a couple (or several) times.

Like Pattie, I am now having considerable difficulty with concentration…and fear that someone will come up behind me and wonder why I’m not doing more (or why I’m not working at all).

wow! it is somewhat comforting and sad that so many of the symptoms listed here are everyone’s! I, too, lost my job of 25 years … can’t retain knowledge, only water … Joe – let me know about your skull … my skull (around the crown) hurts all the time … the fatigue and pain (everywhere now – started in just torso … hurts to breathe) … doctors thought we were nuts … now, they just don’t know what to do … the new drug Ampligen sounds good … I’ve tried everything else … i walk to the kitchen and forget why i’m there …. i drive to the doctor and my Mother (80) has to tell me where I’m going … if we keep keeping on, we won’t end up with dementia in a wheel chair, right? prayers for all (and help our friends … the ones that are left … and family understand a little more … no more “man up/stand up”, stop “rotting” in pain talks

I have trouble with retention of information and often forget how to spell simple words that I could spell earlier or often remember later. I had trouble learning new information as when I tried doing a part-time job. It got so bad that I had to quit.

I love to read but forget who the characters are and have to go back and review them or just continue like it’s a new book. Which can be good because I’m always reading new books!

Over 20 years ago I thought I had early onset Alzheimer’s and was so frightened. My husband was disabled with RA at the time and money was nonexistent except for survival items. I didn’t include myself in that. The rare times I could go to a Dr. I was told I was depressed. By then I was also dealing with very bad pain. Finally, in 1993, I saw a Dr. who examined me and said I had fibromyalgia. My mind is still not particularly sharp. I can’t work; even at a 10 hr. a week job which I tried. I have learned not to expect so much from myself. That I can’t multitask. That people don’t believe me when I tell them I have cognitive problems. What is so disheartening is not being able to trust myself, my judgment, my memory. Like all of you I forget to pay bills. Lately I’ve been forgetting to turn off the stove. I hope this new recognition of what we all go through also means some progress in treatment. Good wishes to all and blessings to Adrienne for this site.

Sounds like early symptoms of Alzheimer’s Disease.

Forgetting ti turn off the stove?

It sounds as if you are a “fibro-danger” to yourselves and others.

Did you know that you could be committed against your will for that?

You’d better stop complaining like that and get to a psychiatrist.

If you aren’t telling the truth, you could get committed for making up lies about being a danger to your self or others.

Either way, I suggest you get your attention needs met in a better, more healthy way- how about joining a health club and exercising to lose excess weight? I know it’s harder work that moaning and getting attention for being “sick” all of the time, but in the long run, it is so much better for you and you won’t have to worry about being committed to a looney bin- or a nursing home for Alzheimer’s disease.

This scares me as I was diagnosed with FM 18 months ago and my memory is gradually getting worse. I am a teacher and am finding more and more myself standing in front of 31 students and forgetting things, struggling to explain things and getting out the right words. I know I jumble words sometimes and have to explain things 2 or 3 times to get it right. It’s awful and I’m scared like others that one day I’ll lose my job as a result.

Does anyone have any strategies that help them with this?
SC

Take all the stories and put them all together and that is me.
This scares the hell out of me and I am SO upset that I have had to go through so much to just to get to point of being told that I have Fibro. Just like a lot of the others the meds for Fibro make me extremly ill. Was put on meds for ADD and the same there, anxiety, panic attacks, forgetting what I was talking about in the middle of walking someone through trying to fix their computer, being made fun of at work, etc. etc.etc.
and it all gets wrapped up in a crumpled little bow and called Fibromyalgia. Well thank God I finaly found a Dr. that really gives a concern about his patients and is not jerking me around like the others has for years. Thank you God! I really feel for all of you and I am so sorry for what you have gone through. This is so unfair what we have to deal with on top of everything else.

I am commenting mainly because there is only one other from a man. Before I saw these articles on brainfog from about.com I was afraid I might have early-onset Alzheimer’s as my memory loss and confusion were so severe I found it hard to believe that ME/cfs alone could cause them.
Now I’m not so worried so thank you for good info..
Sx

This is to answer Margo,

Your 2 master’s degree should definitely have counted.

In my experience, anyone tested for mental capacity, scores change based upon statistical norms already established. For instance, sex, age and level of education are big ones. Another is race or marital status! Testing for mental capacity, is basically the same as intelligence quotient testing. “Intelligence” is measureable and influences such as age, sex, level of education and race are calculated into it. So, if your raw score is the same as someone else, it would and should be corrected for education level. This is in formal neuropsychological testing.

Has a doctor asked you to spell a word backwords or tested your memory by asking you to remember 3 things? This is not “real diagnostic testing”. A neurologist giving you a test called the mini-mental status exam does not mean much by itself and was designed to be used as a quick screening tool for doctors to use bedside. There are formal tests designed to test one’s anxiety level such as the MMPI and for instance the Beck Depression Scale for Depression to name a few.

Determining Mild Cognitive Impairment, truly with formal neuropsychological testing, takes 3 to 8 hours of formal testing. This would also apply to Mild Cognitive Disorder.

Many doctors make these kinds of diagnoses “assumptively”, but to formally diagnose, you need a neuropsychological evaluation.

(continued from above)
For instance, back in the old days, the diagnosis of Alzheimer’s could only be made with 90% accuracy with the aid of neuropsychological testing. It went up to 95% accurate if you had your Cerbrospinal fluid tested for the presence of tau protein. 100% diagnosis is only upon autopsy. MRI’s can determine if there are lesions in certain areas of the brain responsible for memory such as the hippocampus as well as determine if atrophy (brain shrinkage) is present. Certain revelations on an MRI may not be clear, but pair it with neuropsych testing it will give you a more specific answer.

Not doing formal neuropsychological testing for brain disorders has pros and cons. If someone has mild cognitive impairment, is in their 70′s or even 80′s it might be reasonable for a doctor to treat it with drugs such as Aricept or Reminyl without formal testing. Studies have shown that MCI has a great probability of “turning into” Alzheimer’s or dementia. Lets also say the patient has little money and lives far away from a doctor. If this is the case, it may be better to start drug treatment sooner rather than later to halt or at least slow down any decline. But what if the patient has tremors AND memory impariment? How do you know if it is a dementia, Alzheimer’s Dementia or Parkinson’s? How do you know if it is not from the combination of 15 medicines the patient is taking? Well, you don’t know. Not for sure. Without testing, your hope lies in the doctor’s best guess (in my humble opinion).

However, some things that are measurable aren’t always accurate as we know from thyroid testing. How you feel is not always an indicator of your TSH!

It would be great if we were able to fit into measurable disorders that gave others an indication of what we are going through and how disabling , formally or not, CFS/FM/ME can be.

Joe and all:

Regarding illusions and hallucinations, this is not surprising to me at all. Just know that hallucinations (more involved illusions) are very different from delusions.

I think Hallucinations can give us a lot of information about this disorder just like they do other disorders. Hallucinations can encompass visual, auditory, tactile, and olfactory senses to name a few. Think about how sometimes when we fall asleep or wake up with a start, like you are falling? This is a kind of sensory hallucination. Isn’t it ironic, that these symptoms are experienced by those with narcolepsy? We have disordered sleep, too!

Though most people commonly associate hallucinations with “voices in ones head”, like in schizophrenia, they are all thought to be caused by a dysregulation or defect in the brain. Hallucinations are fairly common in normal people. I also think many have them and do not always realize it is a hallucination, which, is ,from the brain hence a “real” thing!!

From Your Guide: I believe that narcolepsy is badly under-diagnosed in us! In fact, I think a sleep study should be part of our diagnostic procedure because we already know that improving sleep improves symptoms. As someone with 7 sleep disorders (including gluten-induced narcolepsy), I know the value of figuring these things out! See ME/CFS or Narcolepsy? for more info. ~Adrienne

Great subject! All of the issues in the study are ones that I experience. For the last year on my job (which I’ve been unable to return to) I had difficulty with learning new procedures, remembering them, making sense what was said in a phone conference, etc. And of course, even though I’m not working, these ‘issues’ are still ‘issues’! Today my roommate was speaking to me and it was like he was talking in a foreign language! Very frustrating and exhausting to have a conversation. I still prefer to read instead of listen to things, only because I can read the same paragraph over and over and over if need be. Frustrating as hell and I’m glad it’s being studied!

I have noticed that since I went through menopause my brain fog has gotten much worse. I can’t remember things, I am at a total loss for words in simple conversations, and I have to repeat reading passages because I just don’t understand what I read. I am trying to go to school and it has been much more difficult due to these memory issues. I am glad to see that the medical community is taking our brain fog seriously. I feel overwhelmed by fibromyalgia and chronic fatigue. I have so many symptoms that I often say you would not believe me if I told you. It would be great if we could get disability for our brain dysfunction because we just can’t function the same as we once did and age plays a big role in the severity of symptoms.

This article is so important to me. I most certainly have “Cognitive Disorder” and I know this has been from a child. I know I don’t have learning disabilities. I have family members with this and the symptoms do not match mine, those explained in this article are what I suffer from.

THanks alot fellow fibromyalgics mi fibro took nine years before diagnosis, by a caring catholic non who was a doctor cant explain all pain went thru in those nine years , was always aquick learner and good public speaker but not anymore after diagnosis was put on antidepressants and i became pain free for awhole year , later igot severe fatigue thank God got gabica that helped alitle this thing is cruel but we have to live by faith knowing Christ holds the future for us its why you live like in hell bit your breath has not been taken a way by God, at the moment im experiencing severe brain forg with few minutes of near fainting vision problem and bodily imballance it has taken me crazy can one tell me, whenever walk i feel like im going to fall is this part of fibro or alzhemers my doctor told me to see a psychiatrist and dont know why since im not having a psychological problem im glad there are men their with me iwondered why me among women im in kenya east Africa anyone can contact me on erickkinglyson@yahoo.com lets not be afraid the bible gives us hope in psalms 34v19 with Christ victory is sure SHALOM

I hope whoever “Andrew” is he does not really have a medical license. He is just a sad, ignorant, bully.