Skip to content


    Exciting News for WebMD Members!

    We've been busy behind the scenes building new message boards for you. You'll have new and easier ways to find messages, connect with others, and share your stories.

    And, this will all be available on your smartphone or other mobile device!

    What Do You Need to Do?

    The message board you're used to will be closing in the coming weeks. While many of your boards will be making the move to our new home, your posts will not. Want to keep a discussion going? Save posts you want to continue (this includes your member profile story), so that you can re-post them in the new message boards.

    Keep an eye here and on your email inbox, we'll be back in touch soon to give you all the information you need!

    Yours in health,
    WebMD Message Boards Management

    Memory Loss
    paridise posted:
    I know memory loss is not one of lupus big symptoms, but I have severe memory loss and it just keeps getting worse as time goes by.

    Take the Poll

    My memory loss just keeps getting worse!
    • Memory loss is not a symptom I have
    • Yes I have bad memory problems
    • Yes I have a little problem with memory
    View Poll Results
    K2isKsquared responded:
    We call it "lupus fog" and Lupies have long complained about this symptom. We not only have memory problems but also problems with concentration. It can be difficult for me to stay focused on a particular task at work.

    We are famous for driving somewhere and not knowing why we went there.

    Carry on a conversation with a lupie and be prepared to wait, and wait, while we hunt and search and try to find the right word -- or just plain forget what we were saying altogether. I ask my hubby and my kids the same questions over and over -- forgetting that I already asked and unable to retain their reply.

    I try to keep myself straight by living with a calendar (posted on my kitchen cabinet so I can't forget to see it) and sticky notes plastered in my car and elsewhere.

    However that doesn't help when I put leftovers somewhere other than the fridge. Now there's a surprise when you find them a few days later

    I read an article that detailed a study done on Lupie brains and scans revealed particular areas of malfunctioning in every Lupie they scanned. The article was in Lupus Now magazine a few years ago. At least the medical community is beginning to realize our memory complaints are a real part of this disease.

    jessi19661 responded:
    memory and other coognitive functions are greatly affected in my case, along with mental/emotional functioning. processing anything is not easy
    lupylisa44 responded:
    I was getting ready to reply to this and say that memory loss was not something that affected me... then WebMD asked for my password...and I couldn't remember it! LOL!

    Actually the only time I have had memory troubles is when my thyroid went kooky and my meds needed adjusting.

    paridise replied to K2isKsquared's response:
    You sound just like me. I forget everything and loose everything all the time. Even at church I forget peoples names. I must have the lupie fog all the time lol. I agree I think this memory problem is a real part of the disease!!! Thank you for your answer and I hope you are having a good day.
    paridise replied to jessi19661's response:
    That is the very reason I was taken off work 6 years ago and put on disability. I could not remember things on my job. I know I had lupus then and the Dr's just did not see it.
    paridise replied to lupylisa44's response:
    Thats good to hear. I hope it stays that way for you!
    113gloriab replied to K2isKsquared's response:
    I agree--I've had all those problems and then some.

    I can remember just sitting in a class and all of a sudden wondering where I was, how did I get there, where was my car parked? This was happening 35 years ago!

    When I'm in a fog, I tend to argue with my dad more. I have trouble with numbers--try balancing a checkbook or doing income taxes!

    And the fog comes on unexpectedly, sometimes for months. It really sucks because it affects all your relationships and every part of your life AND PEOPLE DON'T UNDERSTAND!

    I'll be speaking and I mix up the order of the words every time. I'll say "the red is ball." Finding the word is difficult. Lately, I pronounce a word with more than one syllable wrong, knowing it's wrong. I keep repeating it until I get it right. It's frustrating.
    I know I have brain damage from a stroke and being in a coma (lupus) years ago, and I'm sure that it has affected and increased these problems.

    And I can believe it when they talk about lupus psychosis. Years ago I almost had an affair and I was, and still am, in love with my husband. I was not"me" and it was like I couldn't help it. I know it was because of my lupus, but I still have to live with that guilt from 36 years ago.

    People have a hard enough time trying to understand lupus and they REALLY don't understand lupus fog!!!
    5pandas replied to lupylisa44's response:
    The same thing happened to me! I completely forgot my password!
    joypeaceat43 responded:
    I am so glad I found this;
    I have been complaining to my Doc's about my memory problems for years & they all just say don't worry it will come back....(btw i'm a recovering alchoholic to self medicate for the pain before my diagnosis)But it just seems like it's getting worse.
    For a while I have been blaming it on my med's???
    I get no answer from my Doc's on the med's.
    It keeps me from doing so many things that I really want to do;
    Because now I feel to insecure, it also keeps me isolated from making friends...I can hardly spell any more or talk cause I can't find the right words.
    I hate this so much; I feel so alone & feel that my own children don't believe me, my daughter gets so mad at me for having to repeat herself & my son's say that I'm so random & I ramble on when i talk & some times thats pretty hurtfull.
    So thanks for lettin me ramble on.

    maxxgoon replied to joypeaceat43's response:
    I noticed approximately 5 yrs ago---after suffering a severe headache off to the hospital I went. It was discovered the Lupus had gone into the brain-CNS. After this incident-I had noticed many memories were now literally a thing of the past. Nothing regarding parking cars, asking same q's just I no longer can recall- events I had experienced sometimes with a more involved recollection by my friend- or notes it comes back a bit. Yet, other things I can remember as though yesterday.
    littletammy responded:
    my husband seems to think i am just being stupid and that's not the case...he really doesn't understand how bad the symptoms are with the arthritis and memory and migraines and heart palpitations along with a list of other health issues...i have not been on medication since i was 14 yrs old but i do have "flare ups" and wish i could find a great dr in my area that specializes in Lupus....any recomendations?
    betsywpa replied to K2isKsquared's response:
    I am so there with you. I have had this so long. I can't begin to tell you. I stop to think sometimes what my neighbors names are. Oh it just drives me crazy. I just hate it. Someone will tell me something and I have to write it down or forget it. I'll say I think I was supposed to do something today but don't know what. It is so hard, people don't understand. Especially when you are talking to someone and you are trying to tell them something and the words just don't come out or you can't think of the right word. I say oh this brain of my its just gone. If its not on my calendar just forget it I won't remember it because that is the only way I remember anything. I'm glad to know I'm not the only forgetful Lupie in this world. God bless you all.
    An_206377 replied to joypeaceat43's response:
    I'm glad that I got to read your response because my family and friends seem to think I have lost my marbles when I forget things. I'm getting to point in my life where I actually want to stop driving because I forget where I'm going and end up some place I wasn't suppose to be. I have talked to my doctor about forgetting and having really bad headaches on the right side of my head and all she could say is "It's just stress" are you serious? LOL
    I have a question for other lupies. Does anyone have any problems with their menstral cycles?
    betsywpa replied to littletammy's response:
    I understand the dr Little tammy, I have the same problem in my area. I have to drive over 60 miles and then you wait months for an appt. Its hard to find a good Lupus dr. Check with your local chapter of the Lupus foundation they have lists of drs who only practice with Lupus patients. That is how I found mine. Good thing they have a back up key on this computer otherwise every word would be spelled wrong.

    With Lupus

    WebMD's Day2Night will help you develop personal coping strategies for living with lupus – at home,
    at work, or with family
    and friends.
    Visit Lupus Day2Night

    Helpful Tips

    Vitamin DExpert
    Lupus patients are rightfully told to avoid the sun since it can flare the disease. But guess what... by doing so you are setting yourself ... More
    Was this Helpful?
    94 of 124 found this helpful

    Related Drug Reviews

    • Drug Name User Reviews

    Report Problems With Your Medications to the FDA

    FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.