View Full Version : Memory Loss

09-19-2012, 07:59 AM
I'll keep this brief (for a change). For about a year now, my short term memory is horrific! People tell me things or make arrangements with me and then in a week or so, they'll remind me and I have no idea of what they're talking about. Literally -- no idea. I write things down and then wonder if I really made the appt., or is it a reminder. I joined a support group of sorts where we set goals and such. At the end of the day we were each going over our goals and I didn't recall having set any. But they were there! My long term memory is a savior as I need to be able to handle basic functions but I now add this disclosure to everyone, "call and remind me!!"

Has this happened to anyone else?

09-19-2012, 08:48 PM
This is one of the first things that happened to me. I have actually been diagnosed with short term memory loss although they are not sure if it is from the Lupus itself or the seizures that the Lupus brought on. I keep a white board in my kitchen so things I need to be reminded of during the day are right in front of me. I use my cell phone for reminders to do things and I even have a medicine app that tells me when it is time to take meds simply because I forget. I have argued with people over things I have no memory of them telling me and, if you can believe this, I can't keep up with how old I am.

So to answer your question... yes, I understand completely

09-20-2012, 04:20 AM
i am with mari i keep a whiteboard and a dairy in my purse andsticky notes on the fridge and i request doctors call me the day before my appointments to remind me. i use tablet box that sets out my tablets for the day.

09-20-2012, 09:32 AM
Yeah, my short-term memory is definitely not what it used to be, and it does get worse during a flare. Long term memory is really no problem, and I've not really noticed any trouble recalling the older info.

Even though each person's symptoms are mostly unique to them, brainfog is a pretty common thing for all of us I think.


09-20-2012, 11:19 AM
I feel your pain, i'm lucky I remember my pants in the morning. The long term memory is great but I have trouble remembering the little things. Like the other week I was cooking, I enjoy cooking, and I was making a quiche. I had it ready to go and like 10 minutes before it was I done I realized I never put a crust in it. Of course my mother had to put her 2 cents in saying she noticed that before I put it in the over. If you noticed why didn't you tell me!? I have that problem a lot at least I haven't locked my keys in the car in a while. Small miracles! I have notes everywhere to remind me, white boards, cork boards, notes in my phone, and still I forget. I just tell people that I am most likely going to forget so don't expect anything from me!

09-20-2012, 02:50 PM
What are we talking about? Oh yeah. Memory issues. Lots of fun at work. I have a huge stack of scratch paper next to my phone. As soon as someone calls, I write down their name, if I don't immediately, I'll forget who they are before I can deliver the message. I write down almost everything the boss says. Kinda bugs him but that's his problem, not mine. I write it down so I get his directions right and also, if he changes what he said, I've got it written down (he has a nasty habit of doing that to EVERYBODY). I have a continuity binder on my desk with a page dedicated to each and every task and the protocols for each task. Even though I've done them a zillion times, I don't take any chances. The binder also helps in the event I have to take a lengthy time off, my substitute will know what to do. On a possitive note: I tell people I'm great at keeping secrets- between my mother raising me right (in that respect at least) and memory loss, anything they tell me I'll probably forget in 5 minutes anyhow!

09-20-2012, 03:19 PM
For a man, they say the second thing to go is the hair... I just can't remember the first... Anyway, when on the plaquenil, my memory came back. When I had to quit the plaq from an allergic reaction (to something), the heavy fog came back in, and the memory loss. I've gotten so bad about it, the wife has started to come with me to my appointments when she can. She also has the nurse practitioner at the pcp's put lots of extra notes on the papers they print out for me, so she can read what they've done/said to me... If I just remember to get them out of the car when I get home... "oops - was that my street?..." - Really strange part of all this? I can remember numbers from 1960-1980, home phone, old employee number from work, passwords, locker combinations, etc... go figure.

running girl
09-20-2012, 06:35 PM
I seriously thought I had early onset alzheimers. I has so afraid. When i was told i had lupus and the memory loss and brain fog were part of it i was so releived. It's much better now that I'm on plaquenil.

09-20-2012, 07:27 PM
I seriously thought I had early onset alzheimers. I has so afraid. When i was told i had lupus and the memory loss and brain fog were part of it i was so releived. It's much better now that I'm on plaquenil.

I know what you mean, I thought the same thing. It was a real shock to suddenly be unable to put together a simple sentence. One day I got lost on the way home from the grocery store in the town I grew up in and know like the back of my hand. My first thought was that this must be what it's like to suffer from alzheimers.

I had to stop flying because of brainfog. When I draw a sudden blank while driving, I can just pull over and get help. Draw a blank on final approach while piloting a plane, and you're in big trouble.

As much as the physical pain of SLE and MS wear on me, I really think the sudden short term memory loss has had more of a negative affect on me than the pain has. I can white knuckle it through much of the pain, but there's not much I can do for the memory loss beyond just waiting out my latest flare.


09-20-2012, 08:07 PM
My office is also COVERED in post-it notes. Without them I would be completely lost. I'm wondering if anyone has issues with long-term memory as well? I have always had issues with my long-term memory. Not sure if it's Lupus related or something else.

09-20-2012, 08:33 PM
My short-term memory is the pits, too. I love, love love the calendar feature on Outlook. I enter every appointment, etc. there and when I turn on my laptop on the day of an appointment, a reminder pops up. I love it that our Spouses' group uses Evite. It has a feature that when you reply yes to the event, you can add the event to your outlook calendar. That helps me, too.
My problems come when doing things around the house, like going to the pantry to grab the flour and the baking powder, and getting back to the kitchen with only the flour. I make a lot of extra trips, but I look at that as being a good thing - more exercise!

09-21-2012, 03:45 AM
there was a study paper released recently......
sorry i cannot find it at the moment.

any person living with constant pain is prone to short term memory loss and "fog"
when the pain is removed the memory gets better also.

09-21-2012, 05:50 AM
Oh yes, I have dry erase boards all over the house. Along with one of those really small spiral topped notebooks and a pen everywhere I spend a lot of time (bedside table, side table of the couch, in the kitchen, etc). I've been putting everything in my calender on my phone and on the calender on the fridge. I even have a dry erase board on the front door so I can leave myself notes so I don't forget things, and I have a magnetic clip there too so I can have whatever I need right there in front of my face. Like, the bills that need to go out, papers I need to bring to appointments, etc, etc. It's been very helpful.

09-21-2012, 06:12 AM
My iPhone is my master. I program every deadline (from work deadlines to paying rent), every meeting, and every appointment into the calendar feature (which helpfully syncs up to my calendar on my computer at work), and I sent the phone to alert me half an hour before I need to do anything-- and again just before.

And I use the "Note" feature on my phone to keep track of things like medication lists, symptom lists, random info for doctors (like, my medical record number at a certain hospital), grocery lists, etc. Then I have everything with me. Smart phones were definitely made for forgetful folk.

09-21-2012, 09:36 AM
Derry, I use my phone exactly like you do, OMG it's good to know Im not the only one who my kids think is crazy. there like "MOM, I told you yesterday, remember!" sometimes, I think they make things up lol, usually I know they don't I forget everything. It scares me, when my clients walk in, and I can't remember them and they were here last week. I don't let them know that of course but secretly I wonder how much worse its going to get?

09-21-2012, 04:31 PM
I don't have a smart phone - mine is a dumb phone. My laptop works for those reminders for me.

09-22-2012, 06:40 PM
I just started in this support group and this "gentleman" tried to tell me my mind would eventually turn to mush. I had spent the past two or so weeks in this group and had decided to exercise my mind -- like marathon training. I am grabbing their names, using association, repeating them, greeting them...a tiny inroad into this troublesome problem. I heard one person say to go over your day from start to finish before falling asleep. I try. That's the best I can do. I was in Walmart the other day and had a complete stand still. I had no idea where to go! I know Walmart like I know my home! But the pause, a moment to regroup and keeping a bland face got me through. I was very cold to the "gentleman." No one can tell me what I can and can't do. Especially if I'm willing to do all I can to fight this off.

I appreciate the support. I keep getting told that due to my lack of ANA scores I don't have Lupus. Well, when every other symptom is present, I know I have lupus.