View Full Version : Memory issues/ brain fog/ etc. Questions from a newbie

01-14-2007, 11:32 AM
Can you guys tell me about your issues with memory and brain fog to see if that's my problem?

01-14-2007, 12:47 PM
Well, I guess the best way to describe my "Brain Fog" is to say that I have problems with my thoughts and my memory- things that I should know and remember, for some reason, I just can't! Many times, I have forgotten what I was talking about right in the middle of the conversation! Things happen, like I forgot where I put my keys when I just had them a second ago. I go out to my car, start it up and forgot where I was going to go!!
In fact, we all participated in a thread here where we, tongue-in-cheekly, describled our various issues with brain fog.
Many of us are in our 20's - 30's - 40's and even 50's, so these issues just don't seem to fall in the category of early Alzheimer's. Therefore, the syndrome is a very real part of our Lupus. But researchers across the world are finding out that these symptoms are REAL and are just as REAL as the pain ithat you experience with Lupus - so, Welcome to Lupus Brain Fog!

Those posts about our different experiences with Brain Fog can be found in Lauri's Lounge. The thread is titled, "You Know You Have Lupus If..." and was started by Pinkjmf on July 6, 2006.

Peace and Blessings

01-14-2007, 01:27 PM
On friday nite we went out for a family meal and I was introducing my son and his girlfriend to my sisters new fella. I introduced my son and couldn't remember his girlfriends name--she just about lives with us. Luckily Russ knows I am brain dead and helped me out but I felt so dreadful LOL :oops:
I am 53 so i am old. :cry:

01-14-2007, 03:45 PM
Oh, I drive my husband batty because I tell him things over and over...and I truly have forgotten I already told him this or that. but then again, maybe it's just habit leftover from my teaching years. You have to repeat things a gazillion times to kids!

01-15-2007, 05:28 AM
My Mom has Alzheimers, as did her mother. I'm 56 so when I have 'brain fog' issues, it's really scary for me. I would rather it be the SLE than early onset Alzheimers!!! :?

01-17-2007, 05:09 PM
I have brain fog as well :(

Sometimes I am going down the road and don't remember where I am, much less where I'm going. I've learned to just be patient and it will come back to me in a few seconds. Luckily, I haven't been at a point where I had to turn one way or another :)

I'll say something like "Hand me that . . . " and I can't remember what you call that thing (a hair brush) (a book) (etc.)

I'll say things like "Thank see" instead of "Thank you"

01-20-2007, 03:26 PM
I'm only 27 and I get serious brain fog. Sometimes I just can't understand what people are saying to me. I can hear them fine but they don't make any sense. When it happens I also can't do simple ordering tasks, like alphabitizing papers. I get really confused and also forget what I am doing. Sometimes I forget what I was saying right in the middle of a sentence.

I've noticed that my brain fogs are usually followed by coordination problems. I have muscle weakness and trouble walking and picking up/holding objects in my hands. Does this happen to anyone else?

Doesn't it just seem like you have to laugh at yourself so much? Honestly, if I let muself get too serious I know I'll just cry. I used to work on Capital Hill and now I sometimes don't trust myself to drive alone. A few weeks ago I pulled into an intersection to turn left and totally spaced out. I completely forgot what I was doing and where I was. Before I knew it the light had changed and evryone was honking at me. Rediculious!

01-21-2007, 03:24 AM
Cooking sausages - couldn't smell the smoke - fire alarm is sounding - dog is barking - son telling me it's the fire alarm

Tried to shut off the alarm system - didn't know how - tried calling the fire department - didn't know how to dial the phone

5 minutes pass - finally remember the code - call alarm company - told fire department had already been dispatched

It wouldn't had been so bad had this been the first time this happened. The fire marshal is writing me a letter for disability, because this has become a safety issue.

Brain fog can result in serious problems - I won't cook on the stove without someone else present.


02-25-2007, 02:39 PM
Sorry for the late reply, I'm a bit behind in my reading...

Luckily, my husband does most of the cooking in my house, so I haven't had that bad of a time.

Like Betty, I also have odd hand/foot coordination issues when I have a foggy day. I often stumble for no apparent reason, and I drop things in my hands. It's like I forgot to hold on or something. The worst is when it affects my job. I used to really depend on my memory, now I have to write everything down. Speaking in front of large groups has become an issue for me, luckily I'm a good faker, so I manage to recover. When the fog is at it's worst, I have a difficult time carrying on a conversation. It's like the words I want to use are just beyond my reach. I can't seem to get them out my mouth. The only thing I have found effective is sleep.. sleep and more sleep.


02-26-2007, 08:36 AM
Thanks Sonya, you sound like me. I totally related to your comment that it seems like you forget to grab onto things. I experience that too.

I still cook but I find when I am loosely following a recipe I too easily forget where I am and forget what was added and when. I made a big pot of minstrone soup Friday and ended up tossing it because I got so confused and couldn't figure out what I had done wrong or how I could fix it. I am normally a very good cook.

Oh well. At least I am not alone! Thanks all.

02-26-2007, 08:37 AM
My Aunt has suffered from alzhemiers for about a few years . She is 80 something. My dad is 68 and showing signs as well. I just told my husband that I need a plam pilot to immediately write down things. MY problem is I'm a teacher. I not sure how this is going to affect my job performance in the long run.

02-26-2007, 10:06 AM
It can be extremely frustrating!!! Saturday I was playing Monopoly with my husband and my step daughter (7)....My husband had to me count my money a couple of times...because I flat forgot how to add and subtract....I think sometimes my brain fog is the worst of my symptoms...I went from having an IQ of 157 to 121 now.....so very frustrated.....I agree with the confusing thing....we just moved our office last week and the Phone tech was trying to explain to how to conect my dsl and fax...(things that I done 100 times before) but this I looked at him like what the heck are you telling me....I did not understand a word. When I have these flare ups my coordination is terrible I bump into walls because my balance is way off....so now my husband and I just make jokes bout it. I am taking Plaquinil and it seems to be helping some. God bless

03-13-2007, 07:13 PM
Hi -

It doesnt seem to be as bad for me as the stories i read and i hope it doesnt get worse, but what is really bad is me trying to finish my bachelors degree and at test and other times not being able to remember stuff, it has become a real hidrence, but i am getting so close to the end i have to keep going....like the rest of lupus if i am typing or writing too much and my joints hurt, i just take a break a while......just an fyi, lol....wish there was something we could do, i have picked up mental stimulation books like "Brain Floss" and they seem to help a bit....Jen

04-14-2007, 04:17 PM
I thought the tripping/klutzy thing was all in my head! It gets kind of embarrassing at work... especially when I drop cotton balls or charts in front of patients right before I draw blood or give them a shot.

I just have to laugh at myself or I'd start crying. Some days it gets really bad and I spend the entire day saying "stupid shoes" out loud as I trip over my own feet for the umpteenth time.

04-14-2007, 04:37 PM
No - it's definitely not in your head - many lupus patients have coordination problems. I've dropped so many glasses I just use all plastic now, And I get my sister to help me dust and wash the little "breakables" I have around the house. But what's really embarrassing for me is when I can't help the kids with their homework - and I used to be a teacher.

04-16-2007, 04:43 AM
My mom who had a stroke, says I am more scatter-brained than she is with brain damage from her stroke..I talk to anyone and have to fight to find the words I want to use and I forget everything, appointments, missed one last week oops, and forgot to take my dog to the vet as well! I swear this blows so bad! For lack of being able to find another word :lol:

05-06-2007, 11:13 AM
I constantly forget what I was talking about in mid conversation. My hubby looke at me like I am crazy! I also type stuff out and read it and the wrong words are there!

05-07-2007, 04:05 AM
Brain Fog is unfortunately a very real thing for me. It seems like I am always losing my train of thought mid sentance, and I find myself constantly asking myself, now what was I doing? I find myself on the stairs asking myself was I going up or down and what was I supposed to do? Or I find myself driving wondering where it it that I am supposed to be going. I have found that lists are now an essential part of my life....I just can't lose my list,then we've really got issues.

05-12-2007, 09:17 PM
I was just telling my hubby today that I have started getting lost when driving. Missing exits, and forgetting where I am going or how to get someplace that I have been a zilion times.

I also forget my sisters names, or even my age. Forget about remembering the date...I am still writing 2003. I cant spell worth a darn any more...and it was bad before, so now it is horible.

I also dont recognize what people are saying. They could be speaking english and it sounds like a forign language to me. I have them repeat themeselves, but it doesnt help.

I am a mess.


05-13-2007, 04:23 AM
Yesterday I was driving somewhere with my husband, twice I forgot where I was. Missed a turn once; nearly ran a stop sign the second time. It's a route I could (or should be able to) drive in my sleep. Not anymore... Very frustrating. He always looks at me like I've lost my mind. I tell him I still have most of my mind - but part of it has gone on vacation without me. :lol:


05-13-2007, 09:46 PM
The other thing that happens is when I park in my driveway I park halfway on my grass and halfway on my drive way. The thing is when I am parking I thought I was parking in streight on the driveway.

The other thing is when I park in a parking lot my butt is always sticking out...not that I try to do that, I never park close enough to the curb.

Sometimes I wonder if I should be on the road.


05-14-2007, 11:00 AM
I have to leave notes for myself "everywhere"... they don't always work, though, because I will forget where I put the note.

This is funny, though--Last year I wrote myself a note to buy a boutinierre (sp) for my daughter's prom date... Well, I just found the note--and her prom is coming up on Saturday (the note was a year old)... So it reminded me to buy her a corsage LOL!! (She's going with a group of girls this year.) I had to call while the note was in my HAND or I'd forget.

I often feel like I'm in a place for the first time, but I've been there before. I watch movies and think I've never seen them, but saw them just a month ago.. I can't remember what I did yesterday, or what my schedule is next week.

One thing that has helped me TREMENDOUSLY--We put a computer downstairs in the kitchen... and I have one upstairs in my office. I also have a handheld computer that goes with me everywhere (and has GPS and Navigation software).
Using Outlook, all 3 of the computers sync together, and all have my calendars, contact lists (address book), grocery lists, costco lists, to-do lists, etc. I can press a button and the GPS will lead me to any of the contacts in my address book. (Or anywhere else I want it to take me.) I also have OnStar in my car, so that helps, too--especially if I have to make a detour or need a hotel or ???.
The kitchen computer is the "hub" of the day--it is always on, has the calendar, has alarms, etc. Pickup carpool? It will let me know when to leave... Birthday coming up for brother? It lets me know days in advance so I can get a card or make a phone call. Doctor appointments? No problem.

Between these technological things and the neverending patience and sense of humor of my family, things are pretty much okay for now.

What was the question again?

Oh, and my "rolodex" often gets stuck on the wrong name/word/whatever, too.. It's funny most of the time, but sometimes it's embarrassing. I keep calling my rheumatologist's nurse "Roberta" and I know her name isn't "Roberta"... But for the life of me, I can't remember her name...


05-14-2007, 06:17 PM
Kristin, the corsage story is so funny! What did we do before post-it notes!?

My husband and I are totally addicted to Outlook and I couldn't function without it. I told him I want a Trio or Blackberry for my birthday so I can have the same info with me wherever I go. We have GPS for the car, but hadn't thought about it for the PDA. One more thing to add to my wish list. But I'll probably lose the list....... :?:


05-15-2007, 02:02 AM