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Sandra
05-30-2009, 07:25 PM
I've been newly or at least officially diagnosed recently. I have had a pretty rough go for the past couple of years. The body is so incredibly interesting to me, the body and how it does or doesn't function is amazing, I've learned so much, it's an amazing machine. Perhaps there is one thing that although interesting has become kind of frightening to me, it's my thinking. I wonder how bad it will get and will it stay even when i'm not flaring?
I have never been a rocket scientist but have thanked my mom and dad for giving me a good brain and a wonderful sense of curiosity, that can take you far.
But in the past years funny things are happening and it's getting more often and worse. I can't remember right. The best way to describe it is that I can't even forget things right or normally like I used to. No more oh darn I forgot...now it's just not there at all, only a kind of like a floaty, airy, lost but peaceful feeling. I can actually catch myself thinking "now where did that thought go??? "what was I thinking about?" or even "what do I want or need to think about"
It's really hard to describe and I wonder how I will describe it to my rheumy in June.
How do you describe your loss or change?
My worst fear over all is that all those people and doctors that treated me so badly through a never ending fight for answers to my health issues will now be able to say, "told you she's crazy...or told you she's depressed" God help the first person to do that to me...
Sandra

Rastagirl
05-30-2009, 08:34 PM
Wow...Sandra.....

You describe my mind...my thoughts....so perfectly. You've put into exat words what I've always wanted to say. I've always had a hard time putting exact words to the stuff we call 'Brain Fog'. It's like I can't quite describe it, because I'm living it and my brain won't let me keep a thought long enough to explain it to anyone.

But what you describe.... "A floatly, airy, lost but peaceful feeling" puts into words exactly what I go through. Because it's such a gentle, airy feeling of my thoughts flying away to the recesses of my mind, I've never quite been able to put it into words. You just described it so perfectly, I found a sense of peace in knowing that truly, I am not alone.

I used to try to describe it to my husband, when it first started affecting me, but couldn't. I'd ask him if he ever had thoughts that didn't follow a logical progression....that didn't quite fully progress to a final answer. It would drive me crazy that I would start a thought and then feel like it floated away from me...almost as if it was just out of my mind's grasp. I'd almost remember what I was trying to work towards, but the next thought or word wouldn't come to me. My husband would say, "oh, you're just stressed" or "that happens to everybody"....but I never really believed him. Mostly because it had never happened to me before. I remember a time when I would think of something, and what felt like a logical progression of thinking would follow through to a final end to that thought. But not anymore. Now, it usually falls just short of an end. Almost like I don't really figure things out. It's extremely frustrating.

I can't tell you how many times I've had the thought..."now what was I thinking? ....or "what do I need to be thinking about right now" ...and I cannot bring it to my mind for the life of me. :thinkerg:

This doesn't happen all the time to me...I go through periods of perfectly clear thinking that flows and feels natural....like it used to be. I can tell when I'm having those times for myself too...when I go back and read some of my posts here and they make logical sense and my thoughts flow.

Even now, I have to stop and reread what I've written, in order to figure out what the next logical thing is to say. And that causes me such distress. And it makes me sad for what once was.

I, too, wonder if this is going to progress and become worse over time. Although I haven't noticed it getting worse...I still wonder what is to come.

I'm not sure if I helped you by sharing this, but I was struck by what you wrote and felt the need to respond immediately, before my immediate thoughts were gone in a flash. Thank you for opening up and sharing your thoughts on this subject. Right at this moment, you have helped me more than you know.

Fondly,

:cool2: Lori

red246
05-30-2009, 09:44 PM
Sandra & Lori,

You are not alone! I often find myself feeling the same way. It's like you're in the middle of thinking something and then it's gone or you can't think what comes next. My daughter has this too but she has POTS, a dysautonomia. We laugh at how much our "Brain Fog" is alike. :laugh:

The other year I went to a neurologist because I had a headache that wouldn't go away. Lo and behold I had arthritis in my neck - anyway that's not really the point. About this same time is when I started having the brain fog, pins & needles, fatigue, etc... She kept trying to tell me I was just stressed. When my new neurologist got her reports it said I was depressed. I was just a little bit peeved!

I think alot of us, maybe even all of us, have issues w/ "brain fog" at one point or another. For some it may be minimal, for others severe. Just know that there are people to talk to about it that understand & care!

Oluwa
05-30-2009, 11:37 PM
Me...When I can't think...my mind literally feels like it runs into a wall. Like a blank TV screen. You can tell it is on, but nothing is showing. Or like riding down the freeway with the windows open and you roll them up...nothing..I can hear my heart beat and each breath I take but not a thought to be found.

I call myself Gumby. I don't feel real.

L.
O.

Margie26
05-31-2009, 04:12 AM
Hi ladies.

You describe it so wonderful! I've serious breathing difficulty, but I thought that what you described was because of the breathing difficulty.

Now I read what you wrote, I was so astonished that it is caused by Lupus!

When I have severe inflammation from the Lupus I talk about something and when there is something that happen for example while in the car a car jumps on the road, I totally forget what I was talking about!


It's so frustrating! I have a good brain too and it's so frustrating that this has been happening and I thought it was because of lung inflammation.

Thank you for sharing your insights.

Hugs,

Margie

rob
05-31-2009, 04:30 AM
Hi Sandra,

You are most certainly NOT crazy. You are experiencing a very real and fairly common problem called Cognitive Dysfunction, or as we call it "brain fog". Like Lori, your description of this is almost exactly the same for me as well. My background is in a very technical field of work involving quite a bit of engineering and knowledge of metallurgy. It took me many years of education to learn what I needed to know to be successful in my line of work. And I was the kid who was always winning the spelling bee in school, always had perfect punctuation when I wrote, even had what some call a somewhat photographic memory for things like blueprints or schematics.

Then suddenly one day-poof, it was all gone. All that schooling and knowledge became locked away somewhere in my mind where I could no longer get to it and use it. I started forgetting the simplest of things, and I could no longer spell even the simplest of words correctly. I would stop in mid conversation with people because I could not remember what they said 10 seconds ago. Or I could not find the proper words to speak with. It was like someone just flipped a switch, and I would just draw a total blank. The information and words were still in my head, but it was like I could not gain access to them. I would concentrate on just one thought, and I could come so close to being able to articulate that thought, and it would just slip away. It's incredibly frustrating.

Today, when I have a flare, I get brain fog big time. I actually went to the mall a few months ago, and got lost. I've lived in this area for many years, and know the streets like the back of my hand, yet I could not find my way home. After almost two hours, I finally figured it out. I've had the same phone number for years, yet I have to keep it written down on a card in my wallet because I can no longer remember it. Luckily, on my good days, my non-flare days, I get much of that information back and I can function fairly well.

The best way to talk to your Rheumo about it is to simply tell him you are experiencing Cognitive Dysfunction which is a common, and well documented symptom that many people with Lupus experience. If your Rheumo acts dismissive, or tries to blow you off as "crazy", fire him/her and find a new one.

You are not alone, and as you can see, there are a bunch of us here who are experiencing the same problem you are. Trust me when I say that we understand what you are going through.

Rob

Angel Oliver
05-31-2009, 11:21 AM
Now what was i gonna say ? :)


You also described me too.You hang in there....xxxxxxxxxxxxxxx

Sandra
05-31-2009, 12:23 PM
....what was I gonna say....that's a good one.....ahh thank you guys so much....for some dumb reason it makes me feel better knowing that others understand too and that I am at least I'm clear thinking enough to acknowledge the problem... the spelling thing and forgetting words thing is just mean isn't it!
I was sitting talking to my sisters today and i am sure they must think I an a simpleton....they have no idea about whet is going on with me and don't ask so they must think I am a few bricks shy a load......and unless you experiance it how on earth do you describe it! thanks again so much, Sandra

debbie-b
05-31-2009, 07:12 PM
....what was I gonna say....that's a good one.....ahh thank you guys so much....for some dumb reason it makes me feel better knowing that others understand too and that I am at least I'm clear thinking enough to acknowledge the problem... the spelling thing and forgetting words thing is just mean isn't it!
I was sitting talking to my sisters today and i am sure they must think I an a simpleton....they have no idea about whet is going on with me and don't ask so they must think I am a few bricks shy a load......and unless you experiance it how on earth do you describe it! thanks again so much, Sandra

Hi Sandra,

Btw, did anyone notice, that I usually [/QUOTE]? It ist because otherwise I can't remember ' why, whom and what' thread I am answering.
You are so right, it does feel better knowing, that other people understand us. I have a very good and loving husband, but when I talk about brain fog, he admits, that he can't imagine what it feels like. We know most of the time, what we want to say, it just doesn't come out right. Or we start a sentence and all of a sudden it is gone, vanished. Like Rob, I can not remember my cell phone #, my home # I do remember, so when people ask me my cell #, I make a joke and say since I don't call myself, I have to look it up. I have to call my doc. office for my refills, I have to give my name, date of birth, phone #, prescription name ect, sometimes I have to hang up the phone in the middle of the message, because I can't remember something. Then I write it down, before I call back. They must think I am an idiot.

Dagmar

rob
06-02-2009, 07:29 AM
Now what was i gonna say ? :)


You also described me too.You hang in there....xxxxxxxxxxxxxxx

The one nice thing about brain fog is that it makes you forget that you do indeed, have brain fog!

mountaindreamer
06-02-2009, 12:22 PM
hi sandra,

when i first talked with my rheumy about this, i referred to it as a problem with word recall. (i learned this phrase here at whl) She seemed to understand, and did not question my sanity. It is actually very accurate....some times i really can't recall the appropriate word, and sometimes i can't even remember that i am trying to recall a word.

the term"word recall" implies a technical problem, not a sanity issue....works for me.

angel....you are too cute.

dsunshine
06-02-2009, 01:29 PM
I too have that happen since being diagnosed and being on all the Lupus medication. From my understanding it is called brain fog and it is due to the medication. I guess a side effect just like I have noticed that I take longer to heal if I get a paper cut or any kind of cut and I was told it is also from the meds. Now I have no choice but to write down important things...Stickeys all over the place especially at work. I hope this helps out???

debbie-b
06-02-2009, 04:25 PM
I too have that happen since being diagnosed and being on all the Lupus medication. From my understanding it is called brain fog and it is due to the medication. I guess a side effect just like I have noticed that I take longer to heal if I get a paper cut or any kind of cut and I was told it is also from the meds. Now I have no choice but to write down important things...Stickeys all over the place especially at work. I hope this helps out???

Hi sunshine,

It is not true, that the brain fog comes from the meds, because I had brain fog long before I took the meds. It is 100% a lupus symptom.

Debbie

Rastagirl
08-01-2009, 11:17 PM
Hi.....I wanted to bump this thread back up to the top, so someone I know, close to me, can read it.

I had forgotten about this particular thread...and all the wonderful, descriptive comments of the Brain Fog.....or Cognitive Dysfuntion....that we experience. Why? Because I have brainfog and things slip right out of my head. :wacko:

I've wanted to try to explain to some of my family what I go through in my mind, the brainfog that takes over my mind, but honestly couldn't put it into the right words, at the right time to tell them.

When I found my post in this thread, I realized this is exactly what I'd like them to know about what I go through.

So, 'HopeAlwaysHope', my Sister Sandie......would you be so kind as to read this entire thread for an explanation of why your little Sister's head is a little lupie sometimes. :laugh2:

Love you :heart:

Lori

p.s. I hope this all makes sense, I'm having a little brainfog today. :laugh:

HopeAlwaysHope
08-01-2009, 11:38 PM
I did read this whole thread and thank you, Lori, for letting me know this information and for everyone else who commented on the brain fog and cognitive dsyfunction issues that result from Lupus.

I should tell you though that my sister, Lori, (Rastagirl) has always been a little lupie in the head every since she was little...lol j/k

HopeAlwaysHope (Sandie)





Hi.....I wanted to bump this thread back up to the top, so someone I know, close to me, can read it.

I had forgotten about this particular thread...and all the wonderful, descriptive comments of the Brain Fog.....or Cognitive Dysfuntion....that we experience. Why? Because I have brainfog and things slip right out of my head. :wacko:

I've wanted to try to explain to some of my family what I go through in my mind, the brainfog that takes over my mind, but honestly couldn't put it into the right words, at the right time to tell them.

When I found my post in this thread, I realized this is exactly what I'd like them to know about what I go through.

So, 'HopeAlwaysHope', my Sister Sandie......would you be so kind as to read this entire thread for an explanation of why your little Sister's head is a little lupie sometimes. :laugh2:

Love you :heart:

Lori

p.s. I hope this all makes sense, I'm having a little brainfog today. :laugh: