Hello all,
Pain, medication and depression can cause memory and concentration
loss. Studies also show the disease can also contribute to to them. I
don't say this to scare anyone, but it is common and many people
with autoimmune diseases complain of it.
Any ideas on how to best deal with these problems. I will start.
I read a thread about this a while back Mary. I might have started it, can't rememberWhat were are we talking about? I can't remember either Ya know, I have this too but until this post I just thought I had too much in my head. Of course, that could still be true but maybe it is the RA contributing to my memory loss.
My concentration levels are worse than my memory. I have a really difficult time staying focused on one subject. I'll read a book for 15 minutes, bead for half an hour, watch TV for may 10 minutes, go back to the book, do laundry, post on the forum, check emails. All this in one hour. I think it's the Pred. I hate to blame everything on the Pred. but I noticed when I was tapered to 7.5 mg. my concentration was better.
The memory fades come and go depending on if I'm flaring or not. I write notes to myself, use a large 3 month calendar that's hanging in the office to track.
We play games - Dominos, chess, card games for mental stimulation plus I take classes whenever I get the chance. We don't play Trivial Pursuit because none of our family or friends will play with Stan. He's never forgotten anything!!! Ever. I try and keep my brain active. Being 62 y.o. it's really important for me to challenge myself.
Wish we could find some answers for the brain fog, concentration, and memory loss. Maybe if we put our foggy brains together we can come up with some answers, or not. Lindy
Yeah I know exactly what you mean. I bought new books last week. I got home with TWO of the same book!! I started reading Shes Come Undone and it felt...familiar and yep the farther I read the more I remembered! Jeez! I'm only occasionally on pred so thats not my prob
Joonie did you get to start your Humira yet?
Moana,
She's come undone is such a great book! I *loved* it. I haven't read it for a couple of years and probably should go back and revisit it.
I often buy the same magazine twice (in the same month). I thought I was the only one who did that, mary.
I am getting to the point where I have to write everything down. If not, I may as well forget it.
Phats
I just had this same conversation with my sister. She is going through chemo and one of the side effects is memory loss. I find this the most frustrating thing about the disease besides the fatigue. I know my dad takes some supplement to help with his memory but darned if I can remember what it is Well, when I went to bed last night I found a surprise on my night stand. I had set aside my adderal because I was going to take it later in the morning to see if it would help me stay awake later in the day. Looks like I forgot to take it all.Yep, I can relate to Mary B. it is very difficult to stand in front of a class and totally lose all of the words you had in your head.
I guess my daughter notices it the most and it scares her to death, she says all of a sudden the "keeper of the info" has alzheimers. I am trying to keep a good attitude, but the other day I could not find two rebate checks and it was 0.00. I do not have a teaching contract so to me they were gold. I started to cry, and run around the house. Not actions that their "always put together" mom shows.
I am scared and frustrated by all of this.
Yeah, I have freaked, because I lost something. Not too long ago, I misplaced hubby's rebate check that he got in the mail. And I spent an hour crying and looking EVERYWHERE for the check. Then about 5 mins before he was to come in the door I called him crying telling him I miss placed the rebate check and he could not go deposite it today. And I figured he would have been upset with me. It seems I put it in a "safe" place and I just could not remember where I put it.
Well, hubby came home, looked on top of the tv and there it was. I did not remember putting it there. I thought I put it some where else.
Yeah... I suck... my memory sucks. But I can get outta the bed again
But over the last 4+ years since I have been diagnosed, it feels like there has been a steady brain drain going on. Like most all of you I was the "go to" person who always knew who, why, where and when. Now I can hardly remember anything, and the losing a word in the middle of conversation is just SO embarassing.
Crispy, I forgot about losing a word in the middle of a conversation...it's embarrassing and I NEVER can remembr the word until hours later.
Since Remicade and MXT and Lyrica have helped me. I'm 75% better, in fact I feel better than I've felt in years and my memory and concentration are returning. I'm more focused and sharp than I've been in a long time. I still do stupid things, forget, and have times that I can't concentrate but it's all so much better. Am also tapering Pred. and down to 15mg. I blame it on inflammation and Pred. I wonder when we're at our worst if a brain MRI or Nuclear study would show any changes in the memory and concentration part of our brain. Sure would be an interesting study. Lindy
So are you guys saying that it's meds that does that, or it's RA itself that does that???
And if meds, which ones?
I have a horrible problem with my memory. It was even worse when on Methotrexate - but it's still here. I was hoping it was just that med! Ugh! I'll wash my hair, then forget if I washed it. Have trouble remembering words and forgot my father in law's dog's name today. I didn't want to ask because he's been around for like 10 YEARS! Finally my daughter said his name. Ugh!
I'm trying to make lists and such. I used to be much sharper, but find my mind has dulled a bit.
I have a horrible problem with my memory. It was even worse when on Methotrexate - but it's still there. Tee hee hee HA!
It freaks me out when I forget a word or simple things that i KNOW. My father died of alzhiemers last summer and man, I don't want that. Way rather have RA. He used to ask the same q over and over again. I do that to my daughter sometimes. It's not so much that I don't rmemeber asking, I just don't remember what she answered. I always chalk it up to my mind moving on before i hear her, but secretly it scares the heck out of me. I'm only 43. Would much rather blame it on RA. Can't blame it on meds, it started before methotrexate and enbrel.Linda, I think it's a mixed bag. RA and meds. I had it before I started the meds but it wasn't bad. Just the usual that I chalked up to the aging process. Then RA hit and it became worse. Once I started on all the different meds, specifically Pred. it worsened. Now that I'm doing better I'm sharper. I also think it's different with each person. Some of us are more sensitive to the other than joint symptoms of RA and more sensitive to the meds. LindyI guess I can't say it's super bad, I think maybe I'm more sensitive to it because of my father. He had early onset alzheimer's, he was just in his late 50's when he really started acting odd and we knew their was something wrong. But it was years ealier when he would drive us crazy with the same q's over and over. Thanks for answeirng my post.Well, when I forget a word in a middle of a conversation, which most of my conversations are with hubby and family and on the internet. I just stop and ask hubby what the word I am looking for. I usually give a good descriptive of the word I am looking for like ... What the word for you know that thing-a-ma-jiggy, that your mom use to have at the store on one of her shelves? Then he gives me the word I am looking forThat is why I refuse to take Arava ever again! Other than it made me lose my hair like a cancer patient. UGH! I can deal with hair loss but not by the boat loads and enough to stop up a drain after 2 showers!
What's Arava for?It is a drug like MTX. It is a DMARD. If you cannot tolerate MTX they usually try you on Arava. I can say one thing about Arava... it did help me for a while, but side effects out weighted the benefits.This continues to be a huge problem for me. Not only can I not remember names like if a patient comes into my office, spends 0 on glasses and comes back in three days, I should remember their name and I could until I got sick!! But now, I also have a hard time following directions, I absolutely HATE going some place new. I have a hard time filling out forms as well. I always feel so "detached." I always have to ask people to repeat things several times and often ask people to slow down while talking to me.I have a "pet" name for my kids and they both answer to it... it is a combo... Mandrew. I usually start out with my daughters name and by the time I realize I am to be saying Andrew I already got out the "Ma" in my daughters name. So, now I just call them both Mandrew. Because I am so use to saying "Andrew" for when something is missing, plus he gets into trouble alot.
LOL...My 2 sons are Manthony....Matthew and Anthony!!
hahaha!! I am glad I am not the only one who does it! Hubby thinks I am a nut, because I cannot even remember my own kids nameFeel free to share all ya want, we will listen, well... read
My sister calls her hubby by her ex hubby's name all the time! They been divorced 25 yrs
Good thing hubby number 2 is half deafThe hardest thing for me is the brain fog feels like it has taken my imagination...I am a writer and three years ago when I got really bad I had been writing 10 000 words per week. Since then...nothing...it really does feel like I have lost my imagination, which is incredibly vivid normally, this has been awful for me. I feel blank. I know I haven't but am yet to find it through the brain fog. This is my goal.
Sorry to hear that Cordelia. It is nice to know that we are not alone in this. It has been so hard on me. Much harder than the physical aspect. Thanks everyone for the suggestions. It is just another hurdle to cross and doing it together is great.
I too have lost much of my imagination. I design jewelry and one of my designs is in an international magazine this month. I was making up a sample and I had to read the magazine to figure out how to do it. It was MY design
I have called my 2nd husband by my first husbands name many times. I tell him it is because they look so much alike. Actually, my first husband was a beefy African American and my 2nd husband is a thin white nerdy (his words, not mine) guy.
Mary,
You have made me feel so much better...just knowing someone else has lost their imagination in this disease but sorry it has happened to you too. I don't feel alone anymore.
When I work out how to recover my imagination...I will let you know. It is so frustrating for someone who used her imagination all the time. I feel real and overwhelming grief for just this part of my RA experience. So like you I have been greatly effected by it.
Does your lack of memory cause you to be more nervous or anxious about going to new places?? For example, I just registered for a swimming class that starts next month at our local high school. I have driven by the high school, its only about 4 miles from my house, yet I am already nervous about the first night. Like where will I park and how will I find the pool in the school? I never used to worry about these sorts of things but now, I really get worked up over stuff like this.
I always go to the same gas station, the same little bakery, the same grocery store. I can talk to people easy enough but this is a relatively new "issue" I have been having and I really don't like it!
Like trying to find a new doctors office. I get so nervous about finding places and knowing where to go. I just feel that I can't pay enough attention if its outside my normal routine. Anyone else?
Michele,
I am going through the same thing as you and its been years. I am thinking about getting a GPS hoping it will lessen the anxiety.
I wont go on expressways either. I wish I could get over that.
OK now I'm really getting scared
Well I go at 9:40 and she tells me appt. was 8:40! NO Flippin way! I wrote it down and even posted about it!GRRR. Thankfully they took my blood anyway and I'm still going back at 2pm. Jeez! Now I'm thinking I'm so nuts I can't even hear right
LOL thanks guys I love ya'll tooIts sad, my girlfriend moved about 40 minutes away and there is no good way to get there on street roads. The one time I visited her at her house, I made my hubby drive me because I was to worried about driving an unfamiliar highway!!!!
I too am thinking about gettting a GPS. I was never any good with any sense of directions, but I could memorize written directions like "turn right on Main."
I am going to drive to Portland this friday and it has me worried. Luckily my daughter will be with me and she will drive part of the way (she is only 15, but has a fantastic sense of direction).
I too am getting afraid of driving in busy unfamiliar places and I spent most of my life in Southern California. I drove everywhere in that crazy place. Now I sometimes forget how to get to the church I have been going to for 11 years. I am 46, so I don't think I am senile yet
I used to remember everything for everyone around me, especially my family. I have been answering questions with 'I don't know' quite a bit the last 3 years. Strange they are get annoyed with me when I don't know where they put their shoes, wallets,or car keys. I too can't remember how to spell words I use quite a bit. I also forget names and words and that word thing is getting worse.
I've been blaming menopause. After all I've had RA for 30+ years, and have taken heavy meds for a decade....
Whatever it is from I DO NOT LIKE IT. It scares me.
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