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View Full Version : any hope for brain fog?? I'm new. Help!!!



tyarishanese
10-06-2008, 05:38 PM
ello all,
I'll keep it short because with the brain fog I have a tendency to lose focus quite easily. My name is Tyari and I'm 28 y.o. and I was recently diagnosed with SLE and fibromyalgia as of 8-15-08. I have been on disability since 7-29-08 because I became so confused and 'dazed' that I couldn't do my job anymore. I don't know what to do. I've been going to my rheumatologist, pyschologist, psychiatrist, dermatologist and a couple of other specialists and they still don
t know which is causing the brain fog so they are not treating the fog yet. ( I was also diagnosed with MDD, GAD, panic disorder and dysthymia disorder before they finally found out that it was lupus). I have had the brain fog going on 4 months now on a constant basis. I have had a CT scan, all kinds of bloodwork and more recently an MRI of the brain and the CT scan and MRI didn't reveal anything special. I have to have neuropsychological testing done next. I need some advice, guidance, support. Anything and everything because no one around me has an autoimmune disease so needless to say, its hard for people to understand. I'm on Plaquenil (2x), Relafen (2x), Flexeril (as needed) and Cymbalta (1 x). Any advice, words of encouragement, comments - all welcome. I know I'm missing a bunch of details but please ask any questions and I'll answer. Thank you all in advance. (not so short after all :)

sits_inthe_corner
10-06-2008, 05:51 PM
Hello and a warm welcome tyarishanese

I'm glad you found us.

Yes there are lots of us with brain fog.

How long have you been taking the plaquenil and how do you take it?

I will tell you how I take my plaquenil, but please check with your doctor before you try taking it this way, if you do not already do this.

I take both pills right before bed with a small tub of yogart. The yogart protects my stomack and taking it before bed helps me to sleep through the worst of the side effects.

One of the side effects is light headedness and dizzy spells which can lead to the whole brain fog thing.

I am much better now with keeping focused, but I still have my foggy moments or days.

Being stressed really really rolls the fog in. So I try to minimize stress as much as possible. Deal with things so they dont gang up on me.

I keep pens and paper close to me at all times. I write stuff down to remind myself of little things I tend to forget.

You are and have been dealing with alot, the best thing you can do for your self is make sure you are taking your meds in the best way for your body. I always ask what is the best way to take a medication so I can avoid the side effects. That's why my doctor told me to take the plaquenil with a small tub of yogart before bed.

Eat properly, keep moving (gentle exercise) proper rest. Strive to be the healthiest you, that you can be.

This is a friendly and warm site, I'm sure the others will be along soon to welcome you :)

tyarishanese
10-06-2008, 07:51 PM
I take my Plaquenil once in the morning and again at night, always after a meal. I've been taking it for a month now. My rheumy advised it takes about 2-3 months to start working. I would be able to deal with the brain fog easier if it were intermittent, but constantly being dazed and confused and feeling lost and not being able to remember anything (retrograde amnesia), it just gets to be too much sometimes, ya know?? I go to 6-7 doctors - neurologist, psychiatrist, pyschologist, dermatologist, rheumatologist, PCP (not to mention whatever other test, lab, etc...)

sits_inthe_corner
10-07-2008, 01:20 AM
Hi tyarishanese

That is how I used to tak my plaquenil. Once in the morning and once in the evening.

My doctor also takes plaquenil, she suggested taking both pills right before bed with a small tub (single serving) or yogart.

I must say I've been more alert and feel much better through the day. Please ask your doctor if you can do this. I think it will help.

tyarishanese
10-07-2008, 09:44 AM
I certainly will. Thank you for the information!

Oluwa
10-07-2008, 02:12 PM
Hi Tyarishanese...

Welcoming you..hugs...

I suspect your medication contributes to your brain fog. I have been on both Flexeril and Cymbalta and it is a double whammy on the fog without a horn feeling.

Like your mind has come up against a wall and can't find a crack to wedge through to find a thought and to make a coherent sentence..is that you.

I would suggest asking your doctors to revisit your medication...

For me, Cymbalta altered me completely...eyes glazed, pupil dilated, brain felt numb, my emotions felt like a blank chalk board with no chalk to write...

Flexeril..I still dose with it as needed, but it creates a dead feeling within...with the constant yawns. If I dose for more than three days in a row, I get the blues. You too?

I have had days where I forgot what I did that day...or what I said during a conversation. I forgot recently I made a doctors appointment. I still swear I never did, but they called and reminded me...which I still missed. Twilight Zone...

For me, forgetting, the daily fog it was mostly the medicine, daily dosing. Though having Lupus...we do get the fog, cognitive behavioral changes...and my lack of sleep.

I find when I don't dose too long, many days in a row with medicines like pain relievers, the narcotic, opiate kind...muscle relaxers and/or sleep aids my brain functions normally pretty much on a daily basis.

I do get episodes when I totally draw a blank, and the more I try to recall it, it makes the fog worse, my words don't flow...my train of thought stops, I then begin to feel a bit of anxiety coming..paranoid..like who am I, I am weird......I call it talking like a sausage. Yesterday I took a total of three Lortabs..I was talking like a sausage by dinner time..

One day I was in the car in the driveway and I forgot if I was coming home or leaving. Looked around, no bags, didn't panic and I realize I was leaving...

How is your sleep? Sound, restless, deprived? Drink alcohol? All things that can aggravate the Lupus fog even more...

Again welcome, Tyarishanese..hugs.


Keep looking for your wellness, be well..
Hugs,
Oluwa

tyarishanese
10-07-2008, 05:22 PM
Hi Tyarishanese...

Welcoming you..hugs...

I suspect your medication contributes to your brain fog. I have been on both Flexeril and Cymbalta and it is a double whammy on the fog without a horn feeling.

Like your mind has come up against a wall and can't find a crack to wedge through to find a thought and to make a coherent sentence..is that you.

I would suggest asking your doctors to revisit your medication...

For me, Cymbalta altered me completely...eyes glazed, pupil dilated, brain felt numb, my emotions felt like a blank chalk board with no chalk to write...

Flexeril..I still dose with it as needed, but it creates a dead feeling within...with the constant yawns. If I dose for more than three days in a row, I get the blues. You too?

I have had days where I forgot what I did that day...or what I said during a conversation. I forgot recently I made a doctors appointment. I still swear I never did, but they called and reminded me...which I still missed. Twilight Zone...

For me, forgetting, the daily fog it was mostly the medicine, daily dosing. Though having Lupus...we do get the fog, cognitive behavioral changes...and my lack of sleep.

I find when I don't dose too long, many days in a row with medicines like pain relievers, the narcotic, opiate kind...muscle relaxers and/or sleep aids my brain functions normally pretty much on a daily basis.

I do get episodes when I totally draw a blank, and the more I try to recall it, it makes the fog worse, my words don't flow...my train of thought stops, I then begin to feel a bit of anxiety coming..paranoid..like who am I, I am weird......I call it talking like a sausage. Yesterday I took a total of three Lortabs..I was talking like a sausage by dinner time..

One day I was in the car in the driveway and I forgot if I was coming home or leaving. Looked around, no bags, didn't panic and I realize I was leaving...

How is your sleep? Sound, restless, deprived? Drink alcohol? All things that can aggravate the Lupus fog even more...

Again welcome, Tyarishanese..hugs.


Keep looking for your wellness, be well..
Hugs,
Oluwa

I actually have been suffering from the brain fog for about 4 months now and I was diagnosed 1 1/2 months ago so that was way before I started taking medication. My sleep is okay for the most part, and some nights its really bad. I haven't noticed a change in the brain fog since I've been taking meds. I don't drink alcohol or do any drugs except whats prescribed for me. My docs just keep saying "well, just hang in there", or "we're going to run this test and hopefully find out whats causing the brain fog".... HOPEFULLY!?!?!?!?!!! I've had blood drawn 5-6 times over the past 2 months. ARGH!

Mommyof1
10-08-2008, 04:13 PM
All I can say is wow. I have not yet been diagnosed with lupus. I go see a rheumatologist for the first time nov 12th. I too have terrible i guess "fog" if you want to call it that. I will be talking and forget what im saying or if im interrupted they will ask what i was saying and I wont know. Ill go to do something the second I think of it and forget what. Or someone will tell me something and I have to ask what a few times before it really sinks in. It sucks...is that the kind of "brain fog" ur talking about? I didnt think lupus could actually cause this..interesting. Hope all is well as can be for everyone...take care and god bless :) -Brit

tyarishanese
10-08-2008, 07:15 PM
All I can say is wow. I have not yet been diagnosed with lupus. I go see a rheumatologist for the first time nov 12th. I too have terrible i guess "fog" if you want to call it that. I will be talking and forget what im saying or if im interrupted they will ask what i was saying and I wont know. Ill go to do something the second I think of it and forget what. Or someone will tell me something and I have to ask what a few times before it really sinks in. It sucks...is that the kind of "brain fog" ur talking about? I didnt think lupus could actually cause this..interesting. Hope all is well as can be for everyone...take care and god bless :) -Brit

That is exactly what I'm talking about. One of the biggest complaints about having lupus or fibromyalgia is the brain fog that comes with it. I would go to work and be sitting at my computer and totally forget what I was supposed to be doing and I would be totally confused and wouldn't know how to do my job that I absolutely love!!! I've been on disability since 7/29/08. Its ruining my life. I recently gave up driving because it was too uncomfortable. I felt like I was behind the wheel of a car in one of those video games, so my mom takes me to all of my dr. appts and everywhere else that I have to go. I can't stay focused on anything, no matter how important. Holding a phone conversation is virtually impossible because I totally 'zone out' and won't hear a word.

kittyjo
10-09-2008, 05:14 AM
Hi Tyarishanese...
Just out of curiousity_ have you had your thyroid checked?

I have Hashimoto's which can cause brain fog as well_ or at least contribute it's part to the 'fog' with the gang of other maladies that I have seemed to aquire over time_ and like it's been said already, the meds can also cause one to be dizzy/foggy.

If I'm interrupted I will forget what I was talking about... During this post I forgot how to spell some pretty easy words and that got me totally off track and I had to begin again... Then there are times when I'm talking about something and just zone out, somtimes I just lose track and other times I just lose interest and get so tired I just stop, not caring to even finish a thought_ The need to conserve energy takes over.

Does anybody remember that kids show (I'm a child of the '70's) Captain Kangaroo? There was the Captain, Mr Green Jeans, the Moose, the Rabbit and the most annoying character of all was the Grandfather Clock... Who would forget what he was saying - or just stop mid-sentence - or repeat himself over again from the begining. Ughhh! I have become Grandfather Clock... Aaaccck!!!

Mommyof1
10-09-2008, 05:55 AM
well at least i know im not alone or crazy lol. its horrible. hope we find some answers and help ugh. hope everyone has a good day :) -Brit

tyarishanese
10-09-2008, 10:40 AM
Hi Tyarishanese...
Just out of curiousity_ have you had your thyroid checked?

I have Hashimoto's which can cause brain fog as well_ or at least contribute it's part to the 'fog' with the gang of other maladies that I have seemed to aquire over time_ and like it's been said already, the meds can also cause one to be dizzy/foggy.

If I'm interrupted I will forget what I was talking about... During this post I forgot how to spell some pretty easy words and that got me totally off track and I had to begin again... Then there are times when I'm talking about something and just zone out, somtimes I just lose track and other times I just lose interest and get so tired I just stop, not caring to even finish a thought_ The need to conserve energy takes over.

Does anybody remember that kids show (I'm a child of the '70's) Captain Kangaroo? There was the Captain, Mr Green Jeans, the Moose, the Rabbit and the most annoying character of all was the Grandfather Clock... Who would forget what he was saying - or just stop mid-sentence - or repeat himself over again from the begining. Ughhh! I have become Grandfather Clock... Aaaccck!!!

Yes, they checked my thyroid with the first set of tests.

Mommyof1
11-12-2008, 12:55 PM
I went to see my Rheumy today for the first time and I was told pretty much that theres nothing wrong. He said I am double jointed and it can cause discomfort. Im thinking dude how does that cause burning pain? Then he tells me to look into the cardiologist test results I had months ago. I have a systolic heart murmur he thinks may be causing the problems grr. He wasnt even going to do blood work until I mentioned it. Im so fed up. Too many symptoms to list...I feel like just saying forget it and Ill not worry about it and when Ill die theyll say "Oh so thats what was wrong..im sorry." ............sorry had to vent there lol well i hope everyone is figuring out more than me! take care and God Bless -Brit

Jesse
11-12-2008, 01:55 PM
Ty, I just found out recently that autoimmune diseases, like lupus and Sjogren's can cause brain fog. For a long time I thought it was the methotrexate I was taking that was causing my memory problems. MTX is known to do that, but when I went on Imuran the fog started to lift after a couple of months and my RD said it's because the fog was not from the meds, but the disease. Your lupus may be causing your problem and if it is, treating the disease should help eventually. Plaquenil may not be enough, it wasn't for me, but you'll have a better idea of how it's working for you after you've been on it for several months. It can take a long time to kick in. Good luck. You are not alone. There are many "foggies" here.

KathyW1958
11-12-2008, 02:19 PM
Hi tyarishanese,
I have a problem with brain fog too big time. This past May it got really really bad to the point where if I went anywhere I would forget how to get home or be talking to somebody and totally forget what I was talking about etc. It was unreal and it scared me half to death. I mean I have had brain fog for years and years, but this time it was really bad and it turned out that I have Pernicious Anemia to add to the mix. I thought for sure that I had Alsheimers Disease, but thank heavens I don't. I still have the brain fog, but not nearly as bad as then. I am still trying to find ways to get out of that, but I have yet to find one. I hope that once the Plaquenil kicks in real good that it will ease off some.

Hugs,
Kathy