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ALLoWeyo
05-23-2006, 09:45 AM
I've noticed that as time goes on, I have more and more trouble remembering things and having a conversation. If I go out to eat, sometimes I have a hard time reading the menu because there's too much noise going on. Sometimes I can't even listen to music. Is this normal? Will it go away? I feel like I'm getting stupid or something.

SoleSinger
05-23-2006, 10:21 AM
Or like you have Altzheimer's?

Do you ever try to speak but the words get stuck on your teeth? You KNOW in your brain what you want to say, but it won't come out? But, you can write it all out just fine?

That's what I get most of the time... So, I avoid talking on the phone... I use email and text messaging... A LOT!!

It sucks.

Saysusie
05-23-2006, 10:26 AM
Hi AlloWeyo :D
What you are experiencing is not uncommon for people with Lupus. People with lupus do often experience signs associated with the body's nervous system, such as : headaches, confusion, difficulty with concentration, fatigue,occasional seizures or strokes. At some point during the course of their lupus, up to 50 percent of lupus patients describe these feelings. This collection of symptoms is called "Cognitive Dysfunction" and is usually found in people with mild to moderately active SLE. These symptoms may be clearly documented by neuropsychological testing, and a newer neurodiagnostic test called the single positron emission computed tomography (SPECT) scan shows reproducible blood flow abnormalities.
The reasons for these symptoms are not known. It may have something to do with changes in how a group of chemicals known as cytokines are handled or may be related to certain parts of the brain not getting enough oxygen.
The nervous system requires an uninterrupted flow of blood to supply its tissues with oxygen and nutrients necessary for normal functioning. A number of possibilities have been suggested to explain how lupus may cause the many symptoms of nervous system involvement :
1.Nerve tissue may be damaged when antibodies attack nerve cells or blood vessels.

2.Nutrients and oxygen are delivered through blood vessels that feed the brain, spinal cord and nerves. If blood flow is slowed or interrupted, the cells of the nervous system are injured, unable to function normally, and symptoms develop.

3.The symptoms that occur vary depending on the location and extent of the tissue injury.

Cognitive dysfunction may come and go on its own so there is no optimal therapy for it. I have always suggested that taking care of our emotional health is just as important as caring for our physical health. Many people with lupus have reported that counseling/therapy has helped them in developing coping skills. Also, some have reported improvement when placed on antimalarials and/or steroids. Most helpful is the knowledge of knowing that you are not losing your abilities or your mind. Your memory problems and lack of concentration are symptoms of Lupus and you are not alone in having to deal with it.

Best Of Luck
Saysusie

SoleSinger
05-23-2006, 10:40 AM
This collection of symptoms is called "Cognitive Dysfunction" and is usually found in people with mild to moderately active SLE.

Question: Does that mean it doesn't get worse as/if your Lupus gets worse?

ALLoWeyo
05-23-2006, 11:39 AM
thanks for all the replies! I mean, the physical pain I can muddle through, but the cognative stuff is really getting to me. I'm finding it hard to get through school.

I'm going to go to a neuropsychologist soon.

Saysusie
05-24-2006, 10:29 AM
Solesinger:
From what my research has indicated, cognitive dysfunction has been reported by patients with mild to severe lupus. Also, there is a direct correlation to stress and worsening of cognitive dysfunction. So, I would imagine that as the disease progresses, stress progresses and cognitive dysfunction also progresses :(

Peace and Blessings
Saysusie

hatlady
05-24-2006, 02:58 PM
...or, if stress worsens it, dealing successfully with stress might help it stay under control?

The dysfunction is exactly what I've had in waves ove rthe last months. i've found that if I do some deep breathing and REALLY focus, I can get through it. But there are days when the world seems...a mess.

Like when you get an "ear worm" - the music of an obnoxious commercial - in your brain and that is ALL you can hear all day. The other day I resorted to singing "Doe a Dear" to banish one by replacing it with another somewhat less obnoxious.

Anyway, the good days are ones with no ear worms and with all the words making it through my teeth (as SoleSinger so eloquently puts it!)

Hugs ~

Sheryl
05-24-2006, 04:51 PM
I love it! Words making it through my teeth... or not sometimes. :lol:

One other thing to remember is that many medications increase the brain fog. When I am taking steroids I can barely think... when I get off them, my brain comes back (whatever brain I had!)

Here's my brain process last night, all of this spoken out loud to the dog:

OK, I'm going to make a salad.

I want lettuce, tomato, cucumber and carrots. Lettuce tomato, cucumber carrrots [repeated about six times as I pull the items from the fridge and line them up on the counter.]

OK. Now I need a salad bowl.

And a knife.

And a peeler....

You get the picture!

Now, do you want to be really scared? I'm an architect in charge of several multimillion dollar construction projects :lol: :lol: :lol:

SoleSinger
05-24-2006, 09:26 PM
LOL!! Sheryl, you are funny!!! I say they get stuck on my teeth instead of being on the tip of my tongue, because when something is stuck on the tip of your tongue you KNOW the word but you can't think of it... When they get stuck on my teeth, I KNOW the word, I CAN think of it, I just can't get it out of my mouth...
:lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol:
:lol:


Solesinger:
From what my research has indicated, cognitive dysfunction has been reported by patients with mild to severe lupus. Also, there is a direct correlation to stress and worsening of cognitive dysfunction. So, I would imagine that as the disease progresses, stress progresses and cognitive dysfunction also progresses :(

Peace and Blessings
Saysusie

Awww.... :cry: :cry: :cry: :cry: :cry: :cry: :cry: :cry: :cry: :cry: :cry: :cry: :cry: :cry: :cry:

SoleSinger
05-24-2006, 09:36 PM
Like when you get an "ear worm" - the music of an obnoxious commercial - in your brain and that is ALL you can hear all day. The other day I resorted to singing "Doe a Dear" to banish one by replacing it with another somewhat less obnoxious.




OH!!! I hate that!! And you feel like saying someone give me something ANYTHING but this song!!!

The other thing I hate is having a GOOD song stuck in your head forever... You start to not like it so much... About a month ago I had Kenny Loggin's Danny's Song (You know the one? "Even though we ain't got money. I'm so inlove with ya honey, and everything will bring a chain of love...") for a WEEK AND A HALF STRAIGHT!!! Drove me nuts! LOL :lol: :lol: :lol:

ALLoWeyo
05-25-2006, 05:11 AM
and in hte mornin when I rise! bring a tear of joy to my eyes everything will bring a change of looooOoOoOoooove.


Thanks, now its stuck in my head.

hatlady
05-25-2006, 06:49 AM
:? ..and tell me ev-re-thing is gonna be alright..... :o AYEEEEE!

now I'M singing that one! SoleSinger...couldn't you get an earwork of one of YOUR songs?

Sheryl, you're a riot. I'm an HR person - handle major budgets with benefits, FICA, all that stuff. And disciplinary issues - love it when a supervisor comes in and says "Y'know that issue we talked about last week?" and I think :oops: "we talked last week?" I've found if I take a deep breath, listen a bit, and let the few working synapses in my brain SCRAMBLE a bit, I can usually catch up within a minute or two.

This cognitive thing is probably my worst issue - I can deal wiht the aches and pains, even with the fatigue. But not thinking straight? That's hard. Some days I think I should change my moniker to "befuddled hatlady." :wink:

ALLoWeyo
05-25-2006, 07:01 AM
Exactly! I can push through the pain and fatigue, but thinking. How do you think past the ability of not being able to think. See, I just confused myself. Heheheh.

My boyfriend and I broke up because I couldn't even have an intellectual conversation... and other reasons, but thats the main one.

I was the top of my class, straight A student. I was the "smart" one. I think intelligence was a big part of my ego and self-definition. Now I feel like there's a disease defining me. I think I just need to push through this and eventually "Jennie" will define me. Not "lupus" or "fibromyalgia."

Thank you all for your help. I don't feel like I'm out there alone anymore.

XOXOXOXO

SoleSinger
05-25-2006, 07:30 AM
:oops: Oops... Sorry guys... :oops: Um... Think of Twist and Shout!!!!

Shake it up baby!! ;)

Saysusie
05-25-2006, 09:40 AM
:lol: :lol: :lol: :lol: :lol:

Saysusie

Sheryl
05-25-2006, 11:41 AM
Ok - the absolute worst "earworm" of all time - if you have this tv commercial you're going to hate me:

"Sleep Country USA! Why buy a matress anywhere else?" Try singing that one all day and see how many funny looks you get.

Jennie, I completely relate to your story - I've always been the "smart one" too - multitasking, phones, staff, e-mails, a hundred miles a minute. Stressed, not eating, not sleeping.

This has humbled me. But I am looking for those silver linings - I got to finish a trashy Dean Koonz novel while I spent an hour getting an IV this morning... :wink:

I'm really sorry to hear about loosing your boyfriend. Mine has never been big on intellectual stuff, so I hope I'm safe. But I felt so GUILTY last night when he came home after 13 hours of work and I said, "You have to finish making dinner, I just can't do it." Of course the veggies were steaming the steak marinating, and the potatoes ready for the micro, so it' wasn't THAT bad, but I hate dumping on him when he works so many hours.

Sigh.

PS - sorry if I totally hijacked this thread....

ALLoWeyo
05-25-2006, 12:15 PM
Hijack away!

tbritt
06-07-2006, 06:06 PM
Oh my gosh-this is hysterical!! My Daddy used to sing that song to my Mom all the time, so I love it anyway! My most occuring brain fog is when my husband asks me a question-any question-significant or not-and I just don't reply. The thing is I DO ANSWER, I just don't say it aloud. In my head, I have answered his question and often respond with one of my own. So he is waiting for me to anser his question while I am waiting on him to answer mine. Yeah, it gets really interesting around here. The saying 'I live in my own little world, but it's ok, they know me here' springs to mind. :roll:

Saysusie
06-08-2006, 09:48 AM
OMG!! I cannot tell you how often that happens in my house...I thought I was the only one who did that :lol: :lol: :lol:
I am so happy to hear that someone else responds in their heads and then waits for a response to their silent response. We have a lot of conversations that start with "Well, I told you that!" or "Ok, that was something else that you THOUGHT you told me but you never said the words!"
So, it is not my own personal version of "Brain Fog" after all (lol)

Saysusie

SoleSinger
06-08-2006, 11:28 AM
LOL! YAY!!!!! Yeah, I do that too... I THINK I finished my thought but I didn't...

pinkjmf
06-13-2006, 07:34 PM
I am constantly sitting there looking at my husband like I'm playing 100,000dollar pyramid trying to get the words out.He's guessing and I'm fumbling around with words. IT'S THE PITTS.Sometimes at my son's school the teacher gives me a curious eye like Ive' been drinking or something.NO I just can't get the words out.I know It's got to get better.I just have to laugh,I have been doing this for at least 5 years now.