The brain fog of fibromyalgia and chronic fatigue syndrome can really impair our memories -- both short and long term. The short-term memory problems are evident when we walk into a room and don't remember why we're there, or when we tell ourselves over and over not to forget the grocery list and then arrive at the store only to remember it's sitting on the kitchen table. Those things are aggravating, potentially embarrassing, and often detrimental on the job or when it comes to those have-to-do things like paying bills. In my former job as a TV news producer, a good short-term memory was crucial -- what did the reporter just tell me about that breaking story? What did I need to go change? What did I urgently need to tell my video editor? That was a big part of the reason I finally left that job.
The short-term memory problems can hamper and force us to change our lives. The long-term memory problems, however, can remove pieces of our lives. I developed full-blown fibromyalgia when my daughter was 19 months old, but the symptoms had been steadily creeping up from the time she was born. I continued at my old job until she was 2.5, and then I began to slowly improve. As a result, my memories of her as a baby and toddler are fuzzy and piecemeal. I don't remember what baby foods she liked. I don't remember her first step. I don't remember much of anything, and some of the memories I do have are hazy. When I think back on my older son at that age, the memories are crisp and vivid, like they happened yesterday.
It was a hard realization to come to, that I don't remember most of my daughter's baby-hood. I've had to mourn it as a loss and come to accept that it doesn't mean I'm a bad mother or that I love her any less -- my brain simply wasn't able to make good memories during those years.
Memory is a complicated thing. We don't completely "get" how it works yet, so we don't know how to fix memory problems. Are the memories in the brain, somewhere, and we simply can't retrieve them, or were they never recorded in the first place? And either way, why?
A common belief in the scientific community is that our daily events are recorded as short-term memories, and then while we sleep our brain basically transfers what it deems important into long-term storage. Our long-term memory problems seem like a double whammy -- neurotransmitter dysregulation and other brain issues, like blood flow abnormalities, appear to impair our ability to capture things in short-term memory. That means the record of that day's events is incomplete. Then, we sleep poorly and have abnormal brain activities during sleep, which may be disrupting the transfer to long-term memory. What we're left with is sometimes Swiss-cheese, sometimes seen through gauze, and sometimes nothing at all.
Do you have blank spots in your memory -- missing days, weeks, or years? What important things are missing, and how has it effected you? Have you ever recovered chunks of missing memory? Leave your comments below!
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I sometimes wail about the lack of short term memory (exam time especially) but for everyday life my phone has proven to be the biggest help.
I have digital reminders set up for almost everything, my partner and I share our google calendars and I have several blogs to help me look back at things like the birth of our daughter and so far it seems to work.
I do miss being able to learn new things quickly though – I used to be able to just pick things up and move on, now it takes me twice as long because I have to spend days going over something that would have taken hours before – just because I can’t remember the things i’ve read/ been taught.
kinda sucky but then I remember a poor memory is something a lot of people are born with anyhow and I was lucky before; now i’m just seeing how the other half live.
great article, I have had CFS since I was 15 years old. My memories of my teenage years is like swiss cheese, full of holes. Added Fibro to my list of ailments 10 years ago and have had trouble with my short term memory. Making lists is helpful with for me.
I think it’s great that you wrote about this, it can be very frustrating and it’s good to know you are not alone.
It is very confirming to read about your experience with this. I have severe CFS, and it hit me when my second child was a toddler. There is a year about which I have almost no memories. Very sad. For me, one thing that seems to have kept me from forming long-term memories is temazepam, which I sometimes have used for sleep. I read that it can have this effect, and realized in retrospect that it seems to have had this effect on me–the biggest “holes” in my memory correspond to periods when I was using it regularly for sleep. It could be a coincidence, or not. Anyway, thanks for sharing your experience.
I hate my memory problems. My husband is always saying I can’t believe you don’t remember that. Sometimes I pretend I do so I don’t have to hear about how bad my memory is. Is there anything to do? Everytime I mention it to my Doctor he asks “are you sleeping?” Of course not I have CFS/FMS what is good sleep? I take flak seed oil and tumeric, the flacks seed oil seems to help, it is too soon to tell what the turmuric does. It seems to help some of the pain. I’ve just started the turmuric and I’m starting with one a day. I do crave tai food now
All I can say is AAAARRRRGGG!
I’ve had fibromyaliga since 2002 and i have lost a lot of memories. my kids tell me things about the past several years that i dont remember at all. its sad in a way. we deal and cope with so much now it even steals our fond memories.
I’m 40 now and my entire life seems fuzzy to me. My Fibro became full blown in 2007. I remember strong impression events like my marriage, deaths, and stressful times. I have no memory of the 6 months I took Lyrica. My doctor questioned me about the medication, wanting to know if it worked and I had to tell him “I don’t know- I think I slept most of the time”. It’s embarrassing when people talk to me and I am supposed to know them but I can’t remember their names or how they know me. It’s weird living like this but I write a lot of lists and try to just live for today. It’s all I can do!
I know of many mothers that do not recall many things about their babies development and they don’t have ME/CFS/FM. Try holding a new born after yours are teens. It is not that easy. I think that is why grandparents often get baby memory books as gifts for the mother.
I found for myself having experienced complete blank and coma with CFS that long term memory can supercede short term memory loss.
Around nine years later I now recall the way I tried so hard once to remember I had to bring the car back to the mechanic to get the head tightened again in three weeks. I recall struggling also at how I was going to get my other half to help me recall but could not find the space without severely interupting the mechanics converstaion. My other half was several meters away out of ear shot. I still did not recall to tell him in the car later. Needless to say yet another $1000 needed to be spent.
Neurofeedback made a huge difference for me. My sleep is better than it has ever been and my memory has improved significantly.
I miss my memory…it left home one day and hasn’t returned. I’m only partially jesting here. Tamazapam had similar results for me that Agatha expresses so I changed medications. There is some improvement and even a little improvement is a blessing. Like Vic, I sooo miss being able to learn new things quickly. This is one of my biggest “losses”. Hopefully I can learn to be patient with myself and breaking it all down into managable bits helps a lot.
Back in 2003 I wondered why I was having such a difficult time at work. I was a Team Leader/Analyst for a large insurance company. I was making good money. And then I started to forget things — how to do things — the simple things that I should know. In 2004, when I was diagnosed with fibro, I was relieved to have a name for the many problems I was having. Naively I thought — I can go to management and explain what’s happening. They will give me some help. Wrong. They thought fibromyalgia was not a disease (surprise, surprise) and wouldn’t help me with some of the changes I needed to make to help me do my job. I left there in 2004.
I have memories in bits and pieces. From out of nowhere a memory will come into my mind — usually something not the least bit associated with what I am doing or talking about. It’s strange.
I have always blamed my father’s job for my lack of memories of grade school, etc. He was career Army and we moved every 2 years. Now I know that the moves might have made things a little difficult but the real culprit is my fibro.
Adrienne -
I am so glad that you wrote about this! I was diagnosed with fibro almost 3 years ago. My youngest son just turned 4 and my oldest is almost 7. I had signs of fibro since my oldest son was born and it took until 3 years ago to finally get a great doctor that confirmed what I have.
I am kind of in the same boat as you with long-term memories. I remember more of my oldest son’s babyhood, but the memories of my youngest is hazy. There have been times in the past few years when my kids say “remember when I did this…” and my mind goes blank because I have no idea what they are talking about. To be frank, it sucks.
I have been trying my hardest to keep my brain exercised by going to college, constantly reading, and taking any supplements or eating natural products that may help boost the brain. It’s a horrible feeling being in my 30s and not being able to remember something from my past.
I think you’re on the right track with sleep. Since we sleep different because of the fibro our memories aren’t stored correctly. I went as far as getting a sleep number bed in hopes of getting a better night’s sleep. It has helped a lot. But it’s sad that we have to try so hard to do things in order to save our memories, all because of a disorder that some doctors still won’t recognize as legit.
Since I am only in my 30s I sometimes get concerned about how my memory will be when I’m 60, since I have problems now. Any idea if fibro impacts you more as you age? Aging can hinder short and long term memories, so has there been any studies on fibro patients and their age yet? My fingers are crossed that age won’t matter. Of course, if I cross my fingers I may not remember why I did it!
Thanks for your personal story about fibro and memories.
Faith
Adrienne, I LOVED your article on memory problems, especially talking about losing the memories of your baby girl growing up. I, too, no longer remember MY daughter’s first steps, birthdays or other special days. I no longer remember my father EVER living with me and he left when I was 13 years old! I should remember these things and I’ve beaten myself up for not remembering… “like a good daughter should” or “like a good mother should” remember.
Thank you so much for pointing that out for me. I didn’t realize I was doing that until today. You are terrific and I share your e-mails with all of the members in our support group!
I’ve started joking that I usually can’t remember how to find my backside with a map, GPS and flashlight.
I’m not sure what is more distressing…the fatigue that keeps me down most of the day or the horrible memory problems.
Huge swaths of my life are a blank. I have a masters degree but it seems most of my family thinks I’m a dottering idiot or crazy or both.
It is depressing beyond words.
I think I have had FM/CFS longer than when I was 1st diagnosed in 1979 because ther are huge chunks of my memory missing from high school and after I graduated.
I’M 63. I HAD A PITUITARY BRAIN TUMOR WHEN I WAS 24 YRS. OLD. THAT WAS NOTHING COMPARED TO MY FIBROMYALGIA. I WAS DIAGNOSED 5 YEARS AGO. MY MEMORY IS SO BAD, SHORT AND LONG TIME. MY FAMILY CAN’T UNDERSTAND HOW I CAN’T REMEMBER THINGS. NO ONE WANTS TO MORE THAN ME. IT HAS CAUSED ME TO HAVE DEPRESSION AND HAVE TO TAKE MEDS FOR THAT. PEOPLE CAN’T REALIZE HOW WE FEEL NOT REMEMBERING SOMETHING WE WANT SO BADLY. MPRAISE THE LORD I STILL REMEMBER MY WEDDING AND THE BIRTH OF OUR 2 DAUGHTERS IN 1966 AND 1968. MY PRAYERS ARE FOR EHLP EVERY DAY!!!
Thank you for this article today. I’ve had fibro for years, gradually getting worse. My husband thinks I’m nuts and all my problems are intentional and deliberate. Knowing there are other women who are the same memory losses as me really helps.
I have lots of short and long term memory issues and middle of a sentence lost train of thought problems, etc
…..but I think the one that frustrates me the most is when something is really bothering me or I need to talk about something really important, & then when I go to talk to someone about it, I completely forget (for exp I have had particular CFS symptoms that have been really bad for months, then finally seen a dr and completely forgotten to tell him about them!)
I do now write that kind of thing down, so it is usually not an issue with the dr, but it has happened in social situations, too and I am not ready to start bringing a list on the rare times I get to see friends!
I thought I have only had the fibro for ten years, but now I am reconsidering. I have chunks of my past that are just gone.
I the short-term memory problems are just annoying and scary where my job is concerned. And, I have to work.
I leave reminders for myself when I can remember where I put those.
Hi all… my question is:
What difference is it that causes ’short term
memory loss as opposed to ‘long term’ memory loss?
It sure makes one heckofa difference !!!!
wow…..so many stories ….so many I relate to….I have knowing had ME/CFS for 15yrs …..I will be 56 this year……but I also do wonder if indeed I have not had since childhood as my memories are so vague from when I was small…….I had whooping cough when I was maybe 4 yrs old ……..it does make you wonder…….but I also wonder if I had ADD…….
Now I know where early childhood memories went. I lost my mom when I was nine years old and remember very little of her. I really appreciate your newsletter, it is very informative.
I like the term “swiss cheese” mentioned here, as it describes the majority of my memories. Ones that I do have with blank bits, and unable to sequence events and (for me) the worst is that I dont seem to be able to identify when things occurred- several days, months or years even, before or after this or that event, its all the same! “how long have you had this symptom” says my Doctor or others. I feel a complete fool when I say I cant remember! But also my childrens childhoods are hit and miss with memories. As they are a lot older now, they remanis on things with their Dad and frequently I have no recollection of the events at all! Sometimes I laugh along just to disguise the painful fact. I absolutely HATE it when they say something and they are ademant that they have told me previously, when I have absolutely NO recollection at all, then say “no point telling you cos you always forget”. It feels so dismissive and belittling but I can understand their frustration when they have to repeat the same thing over and over. I even asked my GP if I could have Alzheimer’s but he says no. Still, I feel like I’m loosing my mind some days.
It’s scary at times forgeting where you are going, putting the car in drive instead of park. I have had a lot of trouble as a veterinary tech e peciallly whith surgery and anesthesia. My neurologist sent me to get a neuroscience pschycological exam. There was a battery of tests that showed I was normal to above normal in most areas. I asked the Dr why did the symptoms start with FMS. He said it’s from stress and anxiety and maybe deression. He said FMS does not cause memory trouble. I asked why does almost everyone with FMS have memory problems. He wouldn’t listen to me when I said I have a diary of my pain/fatigue/memory problems. He said that proves I am dwelling on my FMS and I’m strewing myself out. My pain and fatigue are managed by my meds, as long as I don’t overdo it. So I’m not stessing over it. This Dr infuriates me.
Hi Everyone, My name is Kay and I was diagnose with Fibromyalgia last May of 2009. This has been a new journey for me. I do not have a good memory at all. I am so thankful that I am not the only one suffering with memory loss. My daughter got very mad at me last Wednesday night and it broke my heart and all I could do was cry. My heart was so broken. She yelled and curse me for not telling her about our guests coming to stay over-night on Monday. She does not understand that I have a illness and it has changed my life forever. I can fully understand what each of you are going through. All we can do is support each other and hope the ones who do not understand will come around and have a little more compassion for us. Thank you for all sharing……….Love, Kay Grandgeorge
I am 50 & have been with this company for over 24 yrs. I transferred to a different position due to the pain of FM. I have had so much trouble trying to learn everything at my new job, I recently showed my boss an article about brain fog. I fear that I am seen as pretty stupid by my coworkers and that I can forget any chance for promotion. Can anyone give me some advice?
I find it troubling that the concentration is on the negative aspects. Positive thinking and feelings make all the difference in a person’s overall well being; physical, psychological and emotional.
I have had fibro for over 20 years and it has changed my life entirely but I concentrate on the things I still ahve not what I have lost.
As a health care professional and a person with fibro I know how cognitive changes can impact one’s life. However, it is very common for the average person to have forms of short and long term memory loss. Most of our brains do not store all of the information that is in our lives. Fibro does impact cognitive function for some people but many people without fibro also have the same issues with memory.
I would like to suggest that if we spend more time focusing on the positive aspects of our lives it would be energy well spent. The results are worth the effort.
FULLY AGREE WITH LADYMAG
IT’S NOT ALWAYS EASY THOUGH BUT WORTH GIVING IT YOUR BEST SHOT.
I WAS TOLD I HAD FMS IN 1999. I HAD CRONIC FATIQUE
ABOUT 3YEARS BEFORE THAT. I AM LIVING WITH THE FMS.
THIS CRONIC FATIQUE IS KILLING ME. I LIVE IN AZ. THE
HEAT JUST WHIPES ME OUT. I TRY TO STAY INSIDE AS MUCH AS POSSIBLE.I WISH THERE WAS ASOMETHING
OUT THERE THAT WOULD CURE IT. EVEN HELP CALM IT
DOWN.DOES ANYONE HAVE A SUGESTIONS?
THANKS,JERETTA
WOW! every time i read your emails – there is something else I realise I have – I was only diagnosed with fibro about 10 years ago but now realise that i had it all my life – growing pains – etc, etc, etc etc – and now i know why i remember nothing of my childhood and of my childrens. this week we were discussing who had measles, mumps and chicken pox and i just could not tell them. my childhood and a lot of theirs, is just not there. today at 65 i hav learned very well to cope but do not become complacent as things hit me with a wammy just when i least expect. shoshana
I have not recovered some years of missing memory but find my short term is getting better. I stopped treating with drugs and am concentrating on diet, exercise , Chinese techniques of yin and yang for food intake and also the “notion” that FM like CFS and others ‘dis-eases” that all seem the same (to me) are truly caused by bacteria. Its not a mystery. No one looks into it fully.
Adrienne, your article could not of come at a better time. My short-term memory is increasingly getting worse. And I am just realizing that my long-term memory is not as great as I thought. Just last night my son, who’s 25 now, asked me what his blood type is… well, I had written both my son and my daughters blood type down when they were born so I would have it in case of any medical emergency and I put it in a safe spot with all my important things, and for the life of me… could not remember where I put it and was looking all over last night for it… still have not found it. My son looked in his baby book, while I was searching all through my things… we started talking about when him and my daughter was in school… doing sports… and he mentioned about my daughter, who is 23 now…who played out-door soccer in her freshmen year… and I argued with him that she played in-door soccer, not out-door soccer… Needless to say… last night I came acrossed a picture of her that was done by the school, for playing out-door soccer! I felt soo bad for not remembering. She did play a lot of sports including in-door soccer, tennis,…. and I remember going to her games… but do not remember going to any of her out-door games for soccer… I was upset with my self, feeling like I was a bad mom for not remembering. I just read your article this morning, and it made me feel better… thank you… so much…
Thank you! My daughter was diagnosed last year with fibromyalgia at the age of thirteen. I’m always amazed that she can’t remember anyone or anything from her early school years so this helps me make sense of many things that she is missing both short terma nd long term. We sometimes get upset with her for forgetting to do little things but maybe she truly is forgetting. This has been two years of learning many new things for me. Thank you for the newsletters and for all the people who comment!
I thought I was the only one! I’m so glad you wrote this article. My mom died when I was 3 years old and the family decided not to explain what happened. I decided, at that young age, that I was such a bad girl, that my mom left me, couldn’t stand to be my mom. I think my troubles started then.
As someone said, my memory is like Swiss cheese. I only remember flashes of my life – mainly during emotional times (weddings, graduations, birth of my children, etc.) And even those fade as time goes by.
It is comforting to know we are not alone with our memory problems, although dealing with IT and people’ attitudes can be such a profound and emotionally painful affair.
On July 9, 1979, at age 23, I was involved in an auto accident, suffered a brain contusion with unconsciousness and taken to the hospital as a “Jane Doe”. Fortunately, I have no memories of the accident, only a couple fleeting memories of spending a week in the hospital and barely recollect the first year of recovery re-learning how to think, walk and perform the simple daily rituals of living. My parents took me into the family business to “baby-sit” as I recuperated and sharpened motor skills and exposed me to interactions with the public to help be a “normal” person again. Regardless, in social settings during the recovery period, people responded with hateful comments when I said that I did not know who they were. Furthermore, when I explained the circumstances of what happened, there were many insensitive comments that I was using the incident as “an excuse” (???). Like FM, I had no visible physical deformities to indicate I had been through this trauma.
When symptoms of FM began (thirteen years later) after a severe infection from a brown recluse spider bite it was heartbreaking to re-live the same types of experiences in public and endure the same comments when memory fails me. “Chunks” of life experiences are gone since this accident and it is still a battle dealing with daily memory issues (exaggerated) after FMS accompanied by CFS. Only a very few people that I know are compassionate enough to try to understand this challenging disability.
To keep the mind stimulated I rely heavily on the computer and internet, as I have become (for the most part) a recluse to avoid these uncomfortable situations. At the very least, I CAN edit what I write but I cannot erase an impression of making a fool of myself when I speak and forget the words.
To Ladymag… I feel, despite the challenges of these illnesses, we all try to remain positive. This forum is NOT a “pity party”…it is a way to vent what we experience and SHARE with others so we do not feel so alone. That said, it IS important to focus on the positive but we should not remain silent about the negative aspects when we are in the company of like-affected people.
I’ve just found this blog after looking for articles on “missing chunks of memories”. I am 55 and have excellent long term memory, remembering lots of childhood happenings. However, I have huge chunks of memory missing around the time of my diagnosis of fibromyalgia. I think it was actually CFS and still can get symptoms. That was in 1993. I know my daughter got her tonsills out in 1992 (aged 14) and I can’t remember it. I can’t remember bringing her home from hospital or even being there while they operated. There are other great chunks completely missing and it is really scary. I’m so glad I found this blog.
I too am having memory issues. I do not remember large chunks of my children’s lives or my own life during the early stages of my fibromyalgia. I had a high tech job as the administrator of a financial computer system (I was in charge of user accounts, network security and the servers themselves) so you can imagine how stressful that job was, and even more so when suffering from fibromyalgia.
I have also had ‘inconsitent’ memory issues. Last night I had a very shocking moment when I had a memory of something that didn’t actually happen. I had seen a movie and thought I had seen it with someone else entirely. (They had not seen the movie.) It was quite frightening to realize that my mind had made associations with someone being there when they were not.
It helps me to try to remember specifics: Like, what were people wearing, where were they sitting, what physical things happened (did we eat? What did we eat? etc.) so that I can tell if the memory is solid, or if it is full of holes. If it is solid, then generally it is a good memory. If I cannot remember specifics, then I realize that my mind filled in things on its own and I may not have a solid memory.
It is scary and lonesome when this happens. I used to have an excellent memory and total recall, so I have lost something that I used to take pride in. It has caused much pain in my life, and upsets other people. I did lose my job (naturally) because of the pain issues, but mostly because of the foggy days. And of course my employers did not understand this disease at all.
I do try to treat it with humor, but it is a pain that I mostly have to keep inside, or hide it with a false smile and try to pretend that I *do* remember things that I do not.
I too forget a lot of my memories of my youngest who just turned 20. It is like I missed out on a lot. Life goes by too fast to begin with and you miss those times of when your children were young and life seemed more innocent. But when you lose your memory of those events it is almost like a death , a loss. Sounds depressing but very true. I know a lot of meds I have taken for FMS/CFIDS can cause memory issues but I know that the diseases themselves cause problems because now I don’t take those type of meds but I still have memory loss which is bad because in my profession in a a computer consultant/systems engineer. Sometimes I have to fake it in front of clients. I am in a light fog today because of lack of sleep and I’m trying to write some programs but I get lost so easily. Plus at my current client things change and my work load gets scrambled around all the time. I have many, many projects that get re-shuffled everytime and it is harder and harder to get back into them after having to put them aside for a while. Before FMS/CFIDS it was no problme, yes I was younger but still.
I am a Freshman in high school, and I have been searching for an answer as to why I can’t remember ANY of my 5th or 7th grade years or part of my 6th. Reading these comments reassures me that I’m not alone in this, and decreases my frustration greatly.
yes I have fibro and suffer terrible memory problems.
My memory before I became ill was almost picture perfect. I could remember a conversation and recount it word for word, even days later. Losing that to fibromyalgia and chronic fatigue was probably the hardest blow to deal with. Over the years, I’ve noted that the degree of pain I have is in direct correlation to how good or bad my memory is. More pain equals less brain resources, which means fewer memories stick and even ones I have (to me this includes words and speech) become hard to recollect. Knowing and understanding this was the first step; now I try to write things down each day in a journal. It helps me recall later what I know I won’t be able to store away in memory. Bright stickey notes everywhere to help me remember important errands, appointments, or tasks. And a sense of humor to tell myself, “These memory photos didn’t take. Going to have to take better ones next time.”
My sister is 66 and has always had trouble sleeping. Recently she has developed severe short term memory loss and is extremely depressed because of it. She can’t remember going to the store or what she bought. I find my self repeating over and over What we have done together and Why we are doing things. She realizes that she’s in a fog and knows that something is wrong with her. Could this be alheimers? She carries on an intelligent conversation but then can’t remember the conversation the next day. After reading this blog, I’m beginning to think she might have CFS. Do these symptoms sound familiar to anyone else. Extreme short term memory problems but her long term memory is in tack. Please help…………should I take her to a neurologist or a specialist in CFS?
I am 18 years old. I was diagnosed with fibro less than a year ago, but have been looking for a correct diagnosias since i was 12. I too have short term memory loss. This is so frustrating and i’m having trouble dealing with it. none of my friends or family understand. I don’t know anyone my age that deals with the same problems of intense pain and memory loss. If anyone has anything for me let me know please…