I got a call last week reminding me that I have a follow-up appointment with my Nuerologist. Only problem is I have absolutely NO recollection of my first appt. My husband had to remind me that I went. I have forgotten my phone #, my husband's #, my address. I know there is "lupus fog". Is this typical of "lupus fog"?
I would love any advice.
Thanks,
DeAnne
DeAnne,
I don't know that I fully understand "lupus fog" however, I have had momentarily forgotten something like an appointment. But the more you worry about it, the worse it is. Just relax and hopefully..."This too shall pass." At the present time, I am not having the issues. The more I have on my mind, the worse it is. Also stress adds to it. I feel your concern. But seriously, when I'm in one of those times, I keep a tablet handy and make notes. And I don't take on extra responsibilities. Other times, I don't need it. You are not alone. Hugs, Faye
My Lupus fog has been really awful lately and I'm having to keep a post-it pad close by. I see my Rheumy on the 28th and I'm going to ask him about it. Before I got diagnosed with SLE, I was such a detail oriented person and I wanted to know all about everything....now, I don't seem to have patience and want people to get to the point. This is so not like me.....
It could be the meds we take or part of the Lupus process...I don't know. Bless your hearts!
Much love and hugs,
Lori
I agree with Faye & Lori. Calendar everything is what I try to do but seems, I firget to do that.
At momeny I firget to go to work at times. I dont sleep much, i have to get up in 3 hours had no sleep in 36 hours and im wide awake.
Hang in there DeAnne.
I have been experiencing unusual irritation with others e.g. a small group making decisions about where to meet. The expected to & fro & back & forth drives me insane. Really small issues made into a big deal. I almost have to walk away it stresses me so much. Dithering over a menu, rambling explanations with mins of (needless) waffle. I thought I was just becoming very intolerant. Then I thought I was afraid I was becoming a 'ditherer' too & was afraid of the future. I feel Lupus has aged me 10 - 15 years in 12 mths. Almost had to leave the vicinity when a good friend told me how great Lupus was because I drive the group most of the time now (my car windows are heavily tinted). Really didn't know weather to laugh, punch her or cry. I've lost 2/3rds of my previously very long hair sooooo many people just say oh well no big deal wear a wig!!!! Its very difficult going from 50 to mid 60's in a few months. The down side of putting on a brave front is no one realises how hard you have to work to get through every day. My case is mild, I know how fortunate I am but still some days suck! Kaz
loriken214 said:
My Lupus fog has been really awful lately and I'm having to keep a post-it pad close by. I see my Rheumy on the 28th and I'm going to ask him about it. Before I got diagnosed with SLE, I was such a detail oriented person and I wanted to know all about everything....now, I don't seem to have patience and want people to get to the point. This is so not like me.....
It could be the meds we take or part of the Lupus process...I don't know. Bless your hearts!
Much love and hugs,
Lori
I can understand your frustration with the memory thing. I deal with the lupus fog off and on. I became ill at the age of 25. I was sharp minded and had a great memory until I became ill. So, I know it isn't an age thing. I've been on meds and off meds. I still had the memory issues off and on, so I know it wasn't the meds doing it to me. I think it is apart of this dreaded illness. The worst part of the memory thing is when I am in an important convo with someone and my mind goes completely blank. It is a huge embaressment and frustration. Before I make important phone calls I try to write notes of what I know I need to communicate, so in case my mind would go blank I have something to reference to.
Kaz, I think those of us here have probably gone thru that many times. The Predisone messins with me. Mentally & physically. Been on/off that since 2000 when I was diagnosed.
I hated my own company.
SLE is an illness that nobody really knows much about. Its worse than hot flashes.
My windows r tinted too. I have it on my DMV info. This way I wont get a ticket cause of tints
I remember my Rheumy told me I needed to come back home (Coachella, Ca) i was living up in Northrn Calif when I got dagnosed.
"Too cold, cant be in a climate of moisture, no sun, hot n temerature etc"
I told him I may as well live in a plastic bubble.
Ruby i know your feelings. It doesnt get better. Im 13 years of being diagnosed and have other serious illness’s that follow.
We can only hope to get into remission. Ive been there twice for short periods of time. Our meds get less in RX’s or mgs hut i know im a lifer n most my meds.
I believe it takes special people who get SLE. Its a daily struggle for us who have to endure many challenges on our own. We are just different. I know you people make my days better.
I am apso on PatientsLikeMe but it suddenly changed its website blogs I dont log on it.
This one is so supporting.
I’ve always been forgetful, and that got soooo much worse when I had twins ten years ago. The chronic sleep deprivation and stress caused it I think. Now with Lupus I feel like I have periods where I completely forget conversations, commitments that I’ve made, etc. the forgetting conversations part is driving my husband INSANE, and making me feel embarrassed with friends. I’m hoping that eventually the right combo of meds will help? It worriese though because among other things I’m supposed to be trying to get a part time job right now and I don’t feel very confident about my cognition all the time.
Jenny
I'm going through a rough period right now. A yr. ago I had an 8 month remission ( I wasn't well but my symptoms were not as severe during this duration). It was the only remission I've experienced since day one. I'm in a flare up right now. I live alone with no financial assistance and what work I was able to do cut my hrs. to 10 a wk. I'm in a bad patch for sure. I don't mean to complain, I just wanted to tell you how much your words helped me today; when you said it takes a special person to deal with SLE. You are right. Its true, no one truly knows the daily challenges we deal with in our lives. This site and people like you that understand what we deal with has helped me so much. I wish I'd have came across this sooner.
Bozz63 said:
Ruby i know your feelings. It doesnt get better. Im 13 years of being diagnosed and have other serious illness's that follow.
We can only hope to get into remission. Ive been there twice for short periods of time. Our meds get less in RX's or mgs hut i know im a lifer n most my meds.
I believe it takes special people who get SLE. Its a daily struggle for us who have to endure many challenges on our own. We are just different. I know you people make my days better.
I am apso on PatientsLikeMe but it suddenly changed its website blogs I dont log on it.
This one is so supporting.
If you also have fibromyalgia, I know it can be almost that bad with fibrofog. Other causes are low estrogen and hypothyroid. the lupus and fibrofog might cause you to forge your phone number for a minute, then remember it again, but the other 2 can cause you to forget your phone umber for a long time. I have memory problems too, but I don't think it's only lupus in my case.
This is a great topic and very helpful because I am going through the same things. I forget entire conversations, commitments, things on my "to do" lists, etc. I make notes in my phone and try to write everything down at work because I've let my boss down a few times too. I was diagnosed with SLE 8 months ago and have noticed memory problems for about a year. It helps to hear others' strategies and to know I'm not alone. Thank you.
Hello DeAnne,
Just call your memory loss...a very bad foggy day with Lupus.
It's took me to the extremes where i've been on the spot for how long i'm not sure and ste's found me like it and really had to pronounce my name so my senses came back into reality...everything that registers our body comes from our CNS the brain and if it can cause so much damage to our bodies then what the hell is going on with our minds. :)
http://lupus.webmd.com/d2n-coping-with-lupus-11/lupus-fog-memory-pr...
P.S Like Sheila mentioned it is alot worse when fibro is also connected with it.
Same problem here. I’m very forgetful. Like everyone else I began writing things down. I’d try to keep pen and paper nearby at all times. I also write things down on calendars. Don’t put it off thinking you’ll write it down later because you won’t remember. Rarely have I had a good day where I have no problem remembering things since being diagnosed in 2008. I used to have a very sharp mind and am very detail-oriented. I think having been detail-oriented has helped me realize how important it is to write things down. While working I was forgetting things I already knew and also frustrating not only my boss, but myself, too. I felt added stress for not performing as well as I used to, for forgetting things I already learned. My husband and sons would also get frustrated with me for forgetting conversations we had, where something was, etc. Now I’m no longer working so that stress is gone and my husband and sons have accepted that I’m not the same person I used to be before lupus. Lori, you mentioned about having less patience and wanting people to get to the point. The same thing happened to me. At first it was bad and people would look at me surprised because I wasn’t like that before, but now they’ve accepted the “new and less improved” me. The good thing is that my impatience has lessened a lot since I was first diagnosed. It probably has something to do with the hell we are going through when our lupus is at it’s worst right before diagnosis. We’re in pain, confused and wondering what the heck is wrong with us. I’ve always been a succinct person, but now I’m tolerant once again of those that aren’t. DeAnne don’t stress too much about forgetting everyday things. Most of us are dealing with the same issue. I’ve also forgotten my phone number many times, my address, but most of all where I parked my car. Now that’s the worst one! I once had to call home because I couldn’t remember where I parked my car. After walking around the parking lot and not being able to find it I called home in tears. I also have fibromyalgia which does add to the forgetfulness.
Keepkeepinon said:
Same problem here. I'm very forgetful. Like everyone else I began writing things down. I'd try to keep pen and paper nearby at all times. I also write things down on calendars. Don't put it off thinking you'll write it down later because you won't remember. Rarely have I had a good day where I have no problem remembering things since being diagnosed in 2008. I used to have a very sharp mind and am very detail-oriented. I think having been detail-oriented has helped me realize how important it is to write things down. While working I was forgetting things I already knew and also frustrating not only my boss, but myself, too. I felt added stress for not performing as well as I used to, for forgetting things I already learned. My husband and sons would also get frustrated with me for forgetting conversations we had, where something was, etc. Now I'm no longer working so that stress is gone and my husband and sons have accepted that I'm not the same person I used to be before lupus. Lori, you mentioned about having less patience and wanting people to get to the point. The same thing happened to me. At first it was bad and people would look at me surprised because I wasn't like that before, but now they've accepted the "new and less improved" me. The good thing is that my impatience has lessened a lot since I was first diagnosed. It probably has something to do with the hell we are going through when our lupus is at it's worst right before diagnosis. We're in pain, confused and wondering what the heck is wrong with us. I've always been a succinct person, but now I'm tolerant once again of those that aren't. DeAnne don't stress too much about forgetting everyday things. Most of us are dealing with the same issue. I've also forgotten my phone number many times, my address, but most of all where I parked my car. Now that's the worst one! I once had to call home because I couldn't remember where I parked my car. After walking around the parking lot and not being able to find it I called home in tears. I also have fibromyalgia which does add to the forgetfulness.
I have found that the more active the lupus is, the more likely I am to have memory issues. We all do things like misplace our keys occasionally, but I have become lost (more than once) in a Wal-Mart that i go to nearly every week - I was right in the middle of the store and couldn't figure out in which direction to go to get out. The scariest thing was when I was driving and could not remember where I was going. I was alert, knew where I was, and was perfectly safe driving... i just couldn't recall where I was going, even though I had left the house 10 minutes before, specifically to go there.
I also have fibro, but the memory issues are lupus related, for me. The lupus has been under much better control for the last 6 months or so and I haven't had any unusual memory or "foggy" issues since then.
Thanks guys,
you put things in perspective. I just couldn't believe I actually drove myself to a Dr., had tests, and made a follow up and had NO recollection. Then last week I went to my nephrologist for my kidneys, I go every week, I got lost. Not to sound conceited but I (had) a high I.Q., taught school, and worked in finance. My husband is smart, driven, and we (have) had intelligent conversations. I feel like if I lose anymore of my old self I might lose him. That is the biggest fear I have. I just have to keep keeping on. I have extended family that has become closer for which I am thankful but can't help being scared.
jujubeee said:
Terri (double R, one i, triple fantastic)
Just have to say that YOU working at half capacity is like someone else working at full. That goes for each and every person here with lupus who deals with the day to day trials we face with such an unpredictable disease.
Don't let it stop you from enjoying the moment! Love Julie
Tez_20 said:Hello DeAnne,
Just call your memory loss...a very bad foggy day with Lupus.
It's took me to the extremes where i've been on the spot for how long i'm not sure and ste's found me like it and really had to pronounce my name so my senses came back into reality...everything that registers our body comes from our CNS the brain and if it can cause so much damage to our bodies then what the hell is going on with our minds. :)
http://lupus.webmd.com/d2n-coping-with-lupus-11/lupus-fog-memory-pr...
P.S Like Sheila mentioned it is alot worse when fibro is also connected with it.
Terri, thanks for this article! I'm saving it!!
Tez_20 said:Hello DeAnne,
Just call your memory loss...a very bad foggy day with Lupus.
http://lupus.webmd.com/d2n-coping-with-lupus-11/lupus-fog-memory-pr...
This is a great discussion, thanks for starting this. At first I thought I was just losing my mind at times, not being able to remember conversations, and promises I made. I thought it was stress when I couldn't remember what I did the day before.....
I keep a calendar in the kitchen for the Family, and sync my phone calendar with it. I'm trying to keep a diary to jog my memory. Since I've been home recuperating, I'm not as stressed and exhausted as I was while I was working. Hugs, Trisha
I went out last week & purchased a 'new' shower curtain (well 2 actually to fit). When I got home I realised it was identical to the ones hanging up! I mean really I do see the shower curtain often. Still cant believe I did it.
Lots of other similar instances, gets worse if I 'push' myself too hard. Additionally; - absolutely NO MORE multi tasking for me now a days.
Lupus, Meds, Middle Age?