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View Full Version : What helps with the memory issues?



cherokee993
03-04-2009, 09:59 AM
So my husband is getting really worried about me lately and I guess I am too, I am finding more often that I will forget something and its not just being a mom, which I used to think was my problem but now I'm realizing this is not "mommy brain" but is the disease process I suppose.

For example today is my day off and I know I had something to do today and I cannot remember what I needed to do. I know I wanted to go to the store and get some ice cream (accidentally bought the wrong kind the other day LOL) and half and half, make a dentist appointment (did that) but I feel like there is something else I need to be doing and I just can't remember what. So I texted my hubby at work and asked him if he knew and he said he was really worried about my memory loss.

:(

I'm seeing my rheumy next week and I will ask her about the meds, but the last time we met she said to think about Imuran and/or Methotrexate. I'm scared of those meds b/c I have a very demanding job and I can't be "down/sick" so I don't know what to do!

I'm going to have to do something though! The memory loss is really worrying me. And of course the extreme fatigue and body aches. Last night I slept for 12 hours and I'm still lethargic and soooo sore. Granted I worked 12 hours too so I know my body has to recover but it doesn't matter if I get a lot or a little sleep I'm still sore, tired and weak.

Yvette
03-04-2009, 10:51 AM
hi my name is yvette and i just wanted to say that i was also afraid of the methotrexate but believe me you should consider it because i took it and it did wonders for me i was at the point that i couldnt even get out the bed without screaming and i started t take methotrexate and it did wonders and my hands dont get swollen like they used too.

mountaindreamer
03-04-2009, 12:06 PM
hi cherokee993

the memory loss is a real thing. Many of us on the forum now try to laugh at some of our blunders. Here is how I have adapted to memory loss.

I have sticky note pads and pen beside my bed, in my kitchen, and in my purse. Whenever i think of something that i need to do, I write it down, right then, or it is gone.

I have also been very frank with family, friends, business associates, etc. I remind them to remind me of what i am supposed to do....everyone very compassionately complys and it works.

It is interesting, but my family and boyfriend actually feel better about reminding me because they feel like they are helping. I know it is very tough on people who care when they feel helpless.

Just a couple of things that have helped me....but yes, definitely discuss with your dr.

I have also found that the memory loss is a lot worse during a flare....so if you can get help getting out of your flare, then maybe the memory loss will lessen.

good luck, hope you feel better very soon,
phyllis

cherokee993
03-04-2009, 02:03 PM
Thank you for the support and tips. I appreciate it. I think I will have to start carrying around sticky notes. I usually write on my hand but I wash my hands a lot at work (hosptial) so that isn't going to help LOL!

On a positive note I did remember what I needed to do today - pick up my contact lenses and pick up a few things from the store. Yay!

KATROACH1972
03-04-2009, 02:18 PM
Hi, I know about the memory loss, especially shortterm! My kids and hubby use it against me sometimes by saying, "We told you about that yesterday!" I also have mood swings. My Rheum. told me it was from Lupus attacking central nervous system. I am not sure what helps. I put reminders on my cell phone constantly. (that helps, if you read them!) ha ha. I took methetextrate for 6months and just stopped week agao. It helped with joint pain, but made my brain more foggy. Just taking Prednisone right now. Hope someone has better answers for you. Kathy

TobyJug
03-04-2009, 04:31 PM
yeh I just talk over it hahaha I forgot...? nooooooooo u never told me...

hehe nah serious don't know what to do about it other than writing it down in a diary or on a calendar...

just thought I give u the chin up too....

:D

NoodleMom
03-04-2009, 06:04 PM
This is so frustrating isnt it? I have started using what I call my brain book. I forget things so easily. If I have a question about something or I was going to do something that I know is important I jot it in my trusty brain book. I have been using it about a week now. It is just a small spiral notebook. I stick it in my back pocket with a pen. It is very handy there. My only issue is when I am going to write something I need to remember and it gets lost in the fog before I can even write it down. Oh and the pages can end up curled. I dont like that.

It works for me....

Kasey

sick n tired
03-04-2009, 09:54 PM
hey Cherokee,

The memory thing is getting to me, lately. I left my keys in my car and it running at a store. I had to go to the store 2 times because I forgot key ingredients. When relaying this the the hubby, he asked if I made notes. I told him I intended to but got all the way to Albertsons before remembering that I forgot to make the notes. :-[ Actually I should say lol because now that i read it it sounds humerous. :-)
But yes, I, too, am getting very concerned with how bad it is getting. I hope all the ideas we have read will help us both and laughter is the best medicine.

hatlady
03-05-2009, 01:55 PM
I'm supposed to remember things?

Dang.

Lists. Lists to remind me where the lists are. electronic calendars with alarms. patient coworkers.

Dang. I'm suposed to remember on my own?

I do sudoko and puzzles every evening, I think that helps a little as well. But it is an ongoing challenge.

mountaindreamer
03-05-2009, 02:14 PM
I also do puzzles and sudoku. they say it helps avoid memory loss./.i would hate to see how bad i would be without the games.

Jesse
03-15-2009, 10:16 AM
You've gotten good advice here and the only thing I can add is that you shouldn't be too determined not to start MTX or Imuran. I've been on both (Imuran right now) and they do help, although I admit to some fogginess too at times. I know I'd be in much worse shape (heck, I was!) before the meds. I totally understand your reluctance to go down that road, but you sound like your disease is not being controlled well and that's more dangerous than the drugs.

Please keep an open mind and just keep asking questions. We can probably tell you everything you need to know about either drug. For instance, if you start either drug slowly, you may not have side-effect issues at all. Not everyone does.

Bonita
03-15-2009, 11:35 AM
hi my name is yvette and i just wanted to say that i was also afraid of the methotrexate but believe me you should consider it because i took it and it did wonders for me i was at the point that i couldnt even get out the bed without screaming and i started t take methotrexate and it did wonders and my hands dont get swollen like they used too.

i am on prednisone-imuran-plaquinel and the rheumatologist wants to put me on methotrexate and i am really afraid to take this do you have any side effects? bonnie

MoCo
05-12-2009, 10:49 PM
what's the subject again? :laugh: short term memory sucks! it affects my job too...i do monthly ads and i always forget to change or add info like prices OOPS. Luckily my boss is very lenient and understanding. i've been on meds for ten years now and i still forget to take it. but yea...i also use my phone and calender to remind me to take my meds and anything else i need to do. btw, i don't think it's the immuran or mtx cuz i'm not on it and have not been for years. it can be frustrating but an also be humorous sometimes. i hear this everyday...'ay ya she forgot again' OOPS again LOL. friends and family are also great reminders :yes:

sick n tired
05-12-2009, 11:07 PM
Are you under stress? My memory loss was awful until after the wedding...I went to the Rheumy right before the wedding and told him that I thought I was losing my mind...he reminded me of the wedding and told me stress can cause the memory loss...I am better now...I did lose my keys on the day of the wedding and have yet (4 weeks later) to find them...bummer...anyway, just wanted to share my new insight...I still have memory issues, but not as bad as before.

tiggerlishus - Heidi
05-13-2009, 02:04 AM
glad to see the memory lost is on the up!!
my goes like that regualry have great days that bad days can always tell when its going to be a bad day ISDM and i call our head is in the shed!!

i can go from forgetting small things like something at the shop to forgetting what shop i'm going too!!:wacko: lol i
've forgot i put tablet in dish washer and putting extra one in and end up with soap filled kitchen, forgot i was cooking something and end up with charcol for dinner and headache from fire alarm going off ( just thankful it went off!:3:)
i have now got myself an egg timer to help remember me there something in oven!! now all i got to do is remember to turn oven off after!! thankfully i have harry around now who checks things and does quite abit cooking!! :cute:
i also have given out four set of door keys to people i trust for the times i forget my keys,
i have wipeboards around the house as well sticky note and note pads in my regualry used hand bags
i also use my phone calender with alarms to remind me of appointments when i remember to put it in!!
i have brought a pill organiser to sort pills out which stops the have i took that one yet when popping the 20 pills aday just got to remember to take them at all!!
so i think thats it but if i remember anthing else i let you know :-)

froggal
05-13-2009, 02:24 AM
Does anybody know where I live? Before you answer that . . . Does anyone know who I am? J/K! Seriously, the thing that works best for me (because the strings keep falling off my fingers) is to write EVERYTHING down. I have notebooks, sticky-notes, dry erase boards, I even write on my refrigerator (with the dry-erase markers, they wipe right off) to remind myself to turn off the oven if I have been cooking!! Phyllis also had a great idea (which I also do) I try and do sudoku and crossword puzzles just to keep my brain active. My memory has gotten a little better.

gina
05-13-2009, 05:18 AM
Yes the memory thing is very frustrating.
i forget how to spell, i have post its everywhere at work my boss says something to me i say i have to write it down or will forget as i leave his office.

my kids loves saying i told you don't you remember sometimes i think he's playing me.

i also write notes than forget where i put them like grocery list.haha

sometimes just lol it makes me feel better. :yes:

wrightrs
05-13-2009, 10:03 AM
Sometimes I have trouble even signing my name !!!!

lucky7
05-13-2009, 10:43 AM
OMG Froggal!! I write EVERYTHING down too! LOL I have paper, notebooks, sticky pads etc. all over the place! The sad thign is though, i STILL FORGET! :laugh: It can be in my face and im still wandering around going "HUH?" :trink26: LOL Its like a drunk state of mind! Hey Wrightrs, i do the same thing with my name! Its so sad! Oh well, it puts on a show for the people around me at the time!! LOL:) It gives them something to talk about when i walk away thats for sure!

MoCo
05-13-2009, 08:10 PM
omg lucky7 you're so funny! :-) i have the same problems. i could have post-its right in front of me or things right next to my keys or purse and i'd still forget about it. even when i put an alarm in my phone to take my meds and something come up right when it goes off i'll get side tracked and completely forget to take my meds ARGGG! :fighting0050: <-----this is me beating up my own forgetful head haha. oh yea i distribute my pills in a pill box too every week cuz there's a bunch of em lol.

i used to be depressed about it but after forgetting something, if not every thing, every minute of every day the people around you seem to catch on and can become quite understanding and supportive. like my coworker says, "it must be great being you...everyday is a new day" LOL yes it is! i get to forget about all the bad things and everyday is a new experience :thumbs-up:

man now that i think about it....i forget if i brush my teeth. hmmm it makes me wonder if i've always got stank ass breath if i can't tell if i've brushed or not :biglaugh:

omg i just realized i've been going on and on...did everyone forget what they started reading already cuz i know i have LOL!

MoCo
05-13-2009, 08:28 PM
yes! i just found some hair clips i bout last year....that's another thing not to get so down about forgetfullness....you find lil treasures or money you forgot you had :cute:

tiggerlishus - Heidi
05-14-2009, 01:21 AM
[/quote]i have the same problems. i could have post-its right in front of me or things right next to my keys or purse and i'd still forget about it. even when i put an alarm in my phone to take my meds and something come up right when it goes off i'll get side tracked and completely forget to take my meds ARGGG! oh yea i distribute my pills in a pill box too every week cuz there's a bunch of em lol.

i used to be depressed about it but after forgetting something, if not every thing, every minute of every day the people around you seem to catch on and can become quite understanding and supportive. like my coworker says, "it must be great being you...everyday is a new day" LOL yes it is! i get to forget about all the bad things and everyday is a new experience :thumbs-up:

man now that i think about it....i forget if i brush my teeth. hmmm it makes me wonder if i've always got stank ass breath if i can't tell if i've brushed or not :biglaugh:

omg i just realized i've been going on and on...did everyone forget what they started reading already cuz i know i have LOL![/quote]


OMG i'm the same have now put alrams on snooze till i do it!! lol
OOhh and don't worry can't smell your breath from here :-) thou i do the same i got ahabit now of asking other people if my breath is ok my other half laugh at me as can get quite c.o.d about it!!
hmmmmm there was some thing else i was going to say what was it hmmmm
oh yer lol the waffling i do that too and get half way and stop and think what the hell was i talking about feel like some dithery old bird who needs a rimmer frame!! lol
well thats my waffle over :-) lol

tiggerlishus - Heidi
05-14-2009, 01:23 AM
OOH some thing i forgot i like the every day is a new experience lol :-)

lucky7
05-14-2009, 02:59 PM
LOl Moco!!!! YOU cracked me up as well!!!!! :laugh:

MicRoMediC
05-14-2009, 03:15 PM
umm...am i the only one that forgets if i washed my hair or not, (occasionally)?!

i hate forgetting things...people blame it on my blonde hair but that's so not it! urg. i'm frustrated. sometimes i open my mouth to speak but i can't spit it out, even though i know what i'm trying to say.

dsunshine
05-14-2009, 10:01 PM
I knew I wasn't the only one!!! Thanks for bringing this to the light. I felt I was too young and use to have such a great memory and how could i forget simple things...things just said or asked of me 5min. prior but I would forget. I use my cell phone calendar, computer calender reminder, and I use post its especially at work cause I forget everything. The other day when I went to pick up my prescription at walgreens I had to verify my address and I looked into space and really was thinking WOW...what the heck is my address. It was sad and funny but I do have memory loss sometimes...even spelling words or remembering phone numbers I have know more than half my life...I forget. Your not alone!

iseedeadmonkeys
05-15-2009, 07:25 AM
Brain games........:yes:

No im being serious, i like to play Scrabble that helpa loads with my memory problems, Fish i like to eat fish to help too.............erm Brain training games helps too!

On a monday however (mtx day) i dont plan anything or see anyone cause its confusing enough being me let alone any help from drugs too!

ISDM
xx

MicRoMediC
05-15-2009, 09:26 AM
I knew I wasn't the only one!!! Thanks for bringing this to the light. I felt I was too young and use to have such a great memory and how could i forget simple things...things just said or asked of me 5min. prior but I would forget. I use my cell phone calendar, computer calender reminder, and I use post its especially at work cause I forget everything. The other day when I went to pick up my prescription at walgreens I had to verify my address and I looked into space and really was thinking WOW...what the heck is my address. It was sad and funny but I do have memory loss sometimes...even spelling words or remembering phone numbers I have know more than half my life...I forget. Your not alone!

HAHAHAHA I SO FORGET MY ADDRESS TOO, sometimes...:laugh: i'm glad i'm not alone...hahahaha

lucky7
05-15-2009, 11:15 AM
AHHHH, yes, the forgetting of the address, i know that and forgetting the phone number oh so well:wacko: Hey at least were making other people around us feel better about themselves! LOL I guess you can say we are PAYING IT FORWARD!!! LOL They walk away thinking "wow, im not so dumb after all!"

rosebud
05-15-2009, 10:54 PM
I've been having the memory problem too, along with coordination trouble. Today I tried to put a spoonful of oreo pie in my mouth and smacked it right on my face. Now THAT was funny. I wonder - does anyone know if these effects are degenerative or if you go back to 100% when the disease isn't active?

Rastagirl
05-15-2009, 11:29 PM
Sorry to report Rosebud....that it seems to continue even when the disease isn't active. At least for me that is.

My disease isn't active...hasn't been for about 16 years now....but I still have the same memory issues. Some days it's not as bad....but it's definitely there.

I wouldn't say it's degenerative cuz it's never gotten any worse or seems to be progressing, but it certainly seems to be kind of a given in my life.

I let it cause me great grief for a long time because I used to have an incredibly sharp mind, an amazing photographic memory. I breezed through school, a straight A student, never having to study very hard....just look at a page in a book or at my notes and they were photographed in my brain. My recall was near perfect. I sure can't say that anymore. I've spent enough time beating myself up about it, though...then decided, 'c'est la vie'....for me anyway.

I'm kind of hoping that one day I'll even forget that I have Lupus, and no one will remind me...they'll just let me live in ignorance. People will ask, "what's wrong with your mind?"...and I'll say, "What do you mean, I've always been like this." :laugh2:

Fondly,

:cool2: Lori....at least I think I'm Lori

Rastagirl
05-15-2009, 11:31 PM
Oh yeah....thanks for the giggle, Rosebud....a spoonful of Oreo pie smack in the face. At least that's better than the floor....

:)

Rasta :grin69:

mountaindreamer
05-16-2009, 09:12 AM
rosebud, thanks for the laugh....oreo in the face, this is a good one....now i will giggle each time i see an oreo cookie....i might not remember why i am laughing, but i will still laugh.

i too forget names, addresses, phone numbers etc. I have even stood in the shower and could not remember if i had either washed my hair, or bathed. so i just do it over again just in case.

Mary Jane
05-17-2009, 11:23 PM
I often forget whether I washed my hair in the shower...so I'm sure I've washed my hair twice on numerous occassions. I drive my husband crazy. When I go to the grocery store ... which is 2 minutes from my house, my husband will tell me to buy something...and as soon as I get there, I either completely forget, or I remember he wanted something, but just can't remember what he wanted. So I have to call him from my cell phone. When I complained to the neurologist about my short term memory problem,,,all he said was "Write it down."
***I have one for you. Has anyone ever went through a fast food drive thru. paid at the first window, and then just kept driving without picking up the food at the second window. I did that a few weeks ago. I didnt realize I did it until I was almost home. Boy was it embarssing when I had to go back and get the food. If it was just for me, I don't think I would have gone back.:wacko:

lucky7
05-18-2009, 01:01 PM
TOO FUNNY Maryjane!!!!!! LOL Its like i said before, at least YOU gave THEM something to talk about! You did your GOOD DEED for the day! LOl YOu made someone laugh!!!!:laugh:

freerider531
06-17-2009, 06:45 PM
I know exactly what all of you mean. I'm 32 and forget why I walk into the next room. It has really started to affect my work. My doctors keep saying your just stressed w/ teenaged boys. But when I cannot remember how to do something I've done for years, to me that's a problem. My short term memory is really bad.

I've had MRI and everything looks fine in the brain. What do I tell the doctors to make them understand how much this is really affecting me.

lucky7
06-22-2009, 04:44 PM
With lupus MRIs almost always show up "normal", ask for a PET scan, that can show if somethings SERIOUSLY wrong with your CNS. Good luck and dont worry, its NORMAL for us Lupies to have such BAD memory loss, get it checked though, it can cause damage if it IS SERIOUSLY doing damage.