Hey guys, I know I've brought up the memory loss thing before but I'm seriously convinced it's getting worse. Not only am I forgetting bills, appointments, i start cooking food and forget, totally losing track of my days, lose my place mid sentence, I really thing this is not okay. I'm really starting to feel like I am totally losing control here. I'm scared.
I have memory issues also I mess up doctor appointments getting to the doctor appointments as well as writing in the right date on my daily planner. I forget bills as well. The list goes on. It is frustrating . Gets worse gradually .
I have to constantly leave notes for myself and put reminders in my phone. I ask my husband what day it is all the time, and I’m past caring if he thinks I’m crazy! He just looks at me funny or shakes his head. He knows it’s a symptom, but I still think it shocks him that my memory’s so bad. Notes and reminders don’t help with problems mid-sentence, though! Be sure to tell your doc that you think it is getting worse.
Also, my problem isn’t writing things in my planner… I just forget to check it!
DesireaLynn,
I started a discussion a few weeks back dealing with the same thing. I completely and totally forgot an appoint that I attended until I was called for a reminder for a follow-up. Don't remember driving, speaking, testing, etc.
This scared the you know what out of me, so I went to see my Nuero last week. There is a condition that can affect people with lupus where the blood doesn't get to the entire brain. If you have ever had a TIA or stroke this will be worse. I have started doing puzzelss as well as my Nuero working on a program for me to help me with both my memory and other Nuero problems that I have been experiencing. If you have access to a Nuero that you should absolutely go.
Keep us up to date.
XXXX,
DeAnne
Same here! One day I was talking to my mom on the phone when the doorbell rang. I set the phone down to answer the door. It was my son dropping something off for me. When he left, I completely forgot what I was doing (talking to my mom on the phone) and felt like something was missing. I decided to sit down and start doing bills since I had no idea what I had been doing. As I am doing my bills, I hear a women's voice saying, "hello? hello?" It was my mom yelling through the phone wondering what the heck was taking me so long. I felt SO stupid and couldn't believe I did that. Anyhow, this problem seems to come and go and is so very frustrating. Hang in there everyone!
I have been diagnosed for maybe 5 yrs now and I’ve gradually got used to it. I still forget things and there’s days I couldn’t tell you the name of the opposition leader even though I can picture him or the date or any of the important things I should know. But even though its embarrassing its good to know there are others around who are just like you…
I have memory loss too but just assumed it was from prior chemotherapy that I had. Now, I am wondering if it is the Lupus since it is getting worse.
i have the same thing all the time, i'm doing something and i look up and i don't where i am or what i'm doing, then i start to panic. then wonder if i'm loosing my mind.i've learned how to get by. i do use a pop up reminder on my computer, leave notes every where, on the coffee pot. on the bathroom mirror. my family is very good about it i'm forever asking "do you know what i'm doing?" they never get angry, i'm fortunate in that way. i'm sorry to say i've had to make this part of my new normal, i don't think it will go away. :( but i would talk to my dr. it got a little bit better when i started taking imuran. by the way i forgot what i was typing when i was typing this response!
I see on your profile you were diagnosed in Oct. 2012, so this is somewhat new to you. Try not to worry. It’s similar to when you are worrying about taking a test and your mind goes blank. It doesn’t help and can only make matters worse. I too was scared when this first started happening to me when I was first diagnosed. Now that it’s been 5 years since diagnosis I’ve accepted it. I forget practically everything at times, even what day of the week it is. I even forget to remember to write down what aisle I’ve parked in the parking lot at stores. You know it’s bad when you “forget to remember” to write things down! I’ve burned so many meals because I walk away and forget I’m cooking. I do have a cooking timer and it helps if I remember to use it. I have a notebook where I write down the bills, their due dates and the amount owed, so I don’t forget about them. I keep it in plain sight. I also have several wall calendars. I keep one in each room. I write down doctor apps., bills, and even info like if someone visits or if I go somewhere important. It helps when someone says, “Remember when…”. Losing my place mid-sentence happens, too and I love it now if someone helps me out with what I’m trying to say or what I was talking about to them. Try not to be too hard on yourself or scared. It waxes and wanes, but never completely goes away. I think it’s harder for you with having little ones still at home. Mine are grown and can help me out sometimes. It helps to keep your mind stimulated by doing crossword puzzles or word search (my favorite), reading, plus just having some adult conversation whenever possible for that mental stimulation. Less stress helps, too but I know that’s easier said than done. Try to have somebody watch the kids once in a while, so you can either relax or stimulate your mind, soak in the tub…
I’ve been dealing with my various illnesses for over 30 years and memory issues did not become a problem until I started going through menopause in my early thirties (one of the very few benefits of dealing with this illness). I’m 43 now and I have days where I’ll be driving and forget where I’m going, be in the grocery store and not have a clue what I’m doing there, it is very frustrating and the one thing that really scares me. I have 3 kids, 17, 15, and 7 and they are not very helpful. My oldest yelled at me the other day for forgetting to stop for the mail less than 3 minutes after he reminded me. I almost cried. I’m actually looking forward to him going to college so my stress level will drop, sad but true. If you can try to enlist other moms to help with your kids. I have several friends who will take my youngest home to play and feed him dinner when I can’t get out of bed. I used to hide my diseases from everyone and lost many friends that way. I’m trying to get my rheumy to put me on a course of cytoxan since I’ve been in a bad flare for several years. He keeps trying less invasive stuff first but it doesn’t help. Cytoxan is one of the few drugs that always puts me in remission. Talk to your doctor about it and try different meds. I hope it will help.
Hi there! I am chiming in as the memory issue freaks me out too. I am learning but its so humiliating! I used to remember everything without writing it down. I had a memory like an elephant. LOL! Now I have issues spelling (which I was always very good at), remembering phone numbers, people’s names (even my family) and all the other things you all said! I have even been lost driving. With the driving though I did program “home” into my phone and GPS on my car just in case it takes too long to regain my memory while driving. I used to get so mad at my hubby because he has bad ADD and forgets a lot. Well, look who’s joining in…me. Yes, I put my foot in my mouth and apologized. Anyway, I have note pads everywhere, sticky notes, alarms in my phone etc. it’s a learning process but knowing its part of Lupus makes me at least feel better. -Hugs 
Neon orange Post-It notes all over my house and car!
All of you and your responses are why I love this site so much. I was feeling so alone. I try to talk to my friends but they just chalk it up to old age (ummm... btw, I'm 31, NOT OLD!) and others just say "oh everyone forgets" ( i hate that btw). This is beyond misplacing your car keys or not remembering your Mother in Law's birthday. I've left things cooking on the stove and left my house, left my truck running with the keys in it for hours outside a restaurant, and even blanked out my kids bdays while filling out paperwork one day. What kind of mother forgets that?!? You all understand, to some degree, what exactly I'm dealing with here. I wish I had people like you all closer to me. But world wide web friends are better than no friends. Thank you all so much. Much love!!!
I've had cognitive issues as well & was scared I might have early dementia. I saw a neurologist & he ordered an MRI. Everything was normal. I still have periods of forgetting names & appts. I write everything down, it works. Bill paying is done on line. Cognitive dysfunction is common in Lupus
I've been struggling with something along this line in recent months myself. It isn't very bad yet, but it's distressing to me because it's affecting something near and dear to my heart. I love reading, writing, creating. Words to me are life, expression, and are vital to me. My vocabulary means even my dear hubby, who also reads and works with words, is left wondering what in the world I just said. I love words! I also enjoy typing, and am very specific about what I type. Typos are my bane, and I often can correct them before reading them, because I know my fingers hit the wrong keys.
However, lately I've been struggling with finding the right words. I can be talking along and suddenly come to a standstill because the word I want isn't there. I refuse to give in to it, though, and cast about in my mental map of a dictionary, trying to reconnect the pathways to the correct word. Thus far I haven't had trouble with definitions, but I figure this is because the bond/pathway between word and definition is much tighter than between the word and other words.
But it gets stranger. In my typing, I've gotten to where sometimes one hand types faster than the other. Additionally, I am catching myself typing a word ahead, for example, I want to type "myself typing" but instead it comes out "mying". It's frustrating. But the scariest case was when I one day typed a synonym of the word I meant to type. And not a simpler synonym, but a more difficult one. The example I gave to my hubby when relating it (I don't remember the words themselves... go figure!) was that I meant to type "suggest" and I typed "intimate". When it happened, I was stunned, and completely baffled how I could possibly have done that.
I've been wondering if all this is in relation to lupus, but I haven't gotten to see a rheumy yet, and not been diagnosed yet. This means I have soooo many unanswered questions, this being just one of them. It's been helping to sit and read what all of you have to say on different issues. I just hope this new doc will help me gain some personal clarification on what's going on with me.
I’ve been having similar problems. I forget words mid sentence and forget the names of things, even really simple things. For example, I was trying to say nonstick pan,and I couldn’t remember what it was called, I ended up calling it a sticklesspan, but I knew that wasn’t right. It wasn’t untill a few days later I remembered it was called a non stick pan. I’ve noticed as well that I can’t take in too much information at once, especially if people are talking too fast.
I also feared I was developing dementia. After discussing my concerns with my doctor, I underwent about 5 hours of cognitive testing by s neuropsychologist. I tested very well. However, the doctor did conclude that the stress of the disease, the fear of what would be next, and the fatigue all contributed to my inability to focus and follow through. I also had difficulty finding words at times. Since I have been on disability and am able to pace my activities and get proper rest the forgetfulness is somewhat better. However, it does increase with flare ups. Just the way it is. My husband is very good at reminding me to take my meds and keep appointments. Deb
Hi Desirea, I know how you feel. My memory is going, too. Please call your Doctor right away and see if you can get appoint to go in for an exam. Also going over your medications is not a bad idea. When you say you lose track of your days, what does that mean? Do you ever have moments that pass by and you kind of "come to" or come out of it, not having any memory of just what expired. Specifically, if it's only in a 15 minute to 30 min. time frame?
I'm sorry if I was unclear. I don't lose chunks of time, I just spend quite a few days thinking it's a different day. I think things are on certain days (things that have been on the same day for months/years) and I totally think they're on different days. That's as bad at the time thing gets. I'm really more concerned about when I leave things cooking on the stove. I sometimes lose track of what meds I've taken or am supposed to take. Even with the days of the week pill thingy, I'll take them and look later and they're not in there but I swear I don't remember taking them. Sometimes when I'm driving, places that I go multiple times a week, I'll go in the wrong direction or drive past it quite a ways before I realize where I meant to go. I get confused in very familiar places. I made an appointment for Thursday next week. It's never been this bad before. I'm quite worried.