cathyb0junk

I've been thinking over the past few days about CFS/ME and "brain fog".
I'm recovering from meningitis, so actually I've been thinking about the
brain and illness for quite some time now.

I have multiple reasons for "brain fog". Adrenal failure, brain injury
from meningitis and CFS/ME. I also have chronic infections from a
genetic disorder.

I had some dental work done last week. It caused my jaw to become
infected. The left side of my face has been bright red and I've been
running a low-grade fever. Par for the course with my immune system
problems when I have dental work done. Since having the dental work
done, my brain and my entire nervous system haven't worked well.
Sometimes I even wonder if the meningitis is coming back. I will start
limping on my left leg, the one that was partially paralyzed with the
meningitis but recovered later. My short-term memory will completely
desert me again. I will have to walk with a cane again because I have
no balance. This happens every time an infection flairs, without fail.
My nervous system just doesn't work well when I am ill, even if the
illness is nowhere near the brain, for example if I get a stomach bug.

Researchers have repeatedly looked for a link between either nervous
system auto-immune damage or nervous system infection and CFS/ME. Some
researchers say there simply isn't "proof" of a physical or neurological
reason for the claims of "brain fog" reported by CFS/ME sufferers, so it
must be emotional only. Other researchers, on the other hand, have
looked tirelessly for proof of this link.

I am thinking, isn't it ENOUGH simply that someone has a chronic,
debilitating illness, no matter what the cause, for there to be problems
with attention, short-term memory and coordination? Why do doctors even
question this? Before I became chronically ill, I remember being at the
office sick when I was coming down with something and not being able to
get any work done because I was sick. My brain would just refuse to
function. I couldn't pay attention. I would forget things my boss told
me. I couldn't type. My body was saying, "Hello, I am SICK. I need
ALL of my energy to deal with being sick and to mount a defense. PLEASE
take me home and go to bed."

I'm not saying that there isn't nervous system involvement with CFS/ME.
There may very well be. What I'm saying is that CFS/ME brain fog isn't
necessarily any different than the brain fog that ANYONE would have when
they have a debilitating chronic illness.

Doctors and mental health practitioners are so patronizing and
minimizing to say that we should just get out and socialize more, get
out and work, exercise, etc., and we would feel just fine. Emotionally
I might feel better when I do these things, if I don't end up having to
ask someone to drive me home early, or if I don't start seeing double
and become completely unable to hold a conversation, etc., etc. But
physically I DO NOT EVER FEEL BETTER FROM THESE ACTIVITIES!!!!! No
matter how small or short I keep them, with the exception of maybe 5
minutes or less of stretching. There is no such thing as "building up"
for me. Even the smallest activity drains me and makes me feel
physically worse, not better. Which quite often will then make me feel
emotionally even worse than before. It's hard to remain "bright and
cheery" if you physically feel like a truck hit you.

I feel like firing back at some of these people, well, do you go to work
or go out to dinner with a 101 degree fever and your throw-up bucket at
your side in case you need to throw up?!? I would be so much better off
if medical professionals would accept that my physical energy and
physical abilities are severely limited and help me to get the most out
of the ability I do have, instead of making me constantly feel defensive
or encouraging me to overdo it, and completely crash.

Cathy
--

What good is an education if you are too sick to work? Support universal Healthcare.

mandiwrite

I remember one decent doc saying to me, "It would be so much easier if you had breast cancer. Everyone would have an idea of what you were going through, they could see the results of the chemo and so on. Because you continue to be functional to a great extent even though you're in chronic pain, because they don't have a template for this condition, they don't make any allowances for your debility."
I have been right in it again lately, not with the crippling fatigue that pins you to the bed, thank heaven, but with really bad pain. Sometimes I feel like screaming at friends, family, colleagues: do you know how hard it is for my brain to process anything at all at the moment? Can't you praise me for simply keeping going?
Mandi

-----Original Message-----
From: Chronic Fatigue Syndrome discussion CFIDS/ME [mailto:CFS-L@LISTSERV.ICORS.ORG] On Behalf Of CB
Sent: 06 November 2009 10:23 AM
To: CFS-L@LISTSERV.ICORS.ORG
Subject: Just a Thought - About Thought

I've been thinking over the past few days about CFS/ME and "brain fog".
I'm recovering from meningitis, so actually I've been thinking about the
brain and illness for quite some time now.

I have multiple reasons for "brain fog". Adrenal failure, brain injury
from meningitis and CFS/ME. I also have chronic infections from a
genetic disorder.

I had some dental work done last week. It caused my jaw to become
infected. The left side of my face has been bright red and I've been
running a low-grade fever. Par for the course with my immune system
problems when I have dental work done. Since having the dental work
done, my brain and my entire nervous system haven't worked well.
Sometimes I even wonder if the meningitis is coming back. I will start
limping on my left leg, the one that was partially paralyzed with the
meningitis but recovered later. My short-term memory will completely
desert me again. I will have to walk with a cane again because I have
no balance. This happens every time an infection flairs, without fail.
My nervous system just doesn't work well when I am ill, even if the
illness is nowhere near the brain, for example if I get a stomach bug.

Researchers have repeatedly looked for a link between either nervous
system auto-immune damage or nervous system infection and CFS/ME. Some
researchers say there simply isn't "proof" of a physical or neurological
reason for the claims of "brain fog" reported by CFS/ME sufferers, so it
must be emotional only. Other researchers, on the other hand, have
looked tirelessly for proof of this link.

I am thinking, isn't it ENOUGH simply that someone has a chronic,
debilitating illness, no matter what the cause, for there to be problems
with attention, short-term memory and coordination? Why do doctors even
question this? Before I became chronically ill, I remember being at the
office sick when I was coming down with something and not being able to
get any work done because I was sick. My brain would just refuse to
function. I couldn't pay attention. I would forget things my boss told
me. I couldn't type. My body was saying, "Hello, I am SICK. I need
ALL of my energy to deal with being sick and to mount a defense. PLEASE
take me home and go to bed."

I'm not saying that there isn't nervous system involvement with CFS/ME.
There may very well be. What I'm saying is that CFS/ME brain fog isn't
necessarily any different than the brain fog that ANYONE would have when
they have a debilitating chronic illness.

Doctors and mental health practitioners are so patronizing and
minimizing to say that we should just get out and socialize more, get
out and work, exercise, etc., and we would feel just fine. Emotionally
I might feel better when I do these things, if I don't end up having to
ask someone to drive me home early, or if I don't start seeing double
and become completely unable to hold a conversation, etc., etc. But
physically I DO NOT EVER FEEL BETTER FROM THESE ACTIVITIES!!!!! No
matter how small or short I keep them, with the exception of maybe 5
minutes or less of stretching. There is no such thing as "building up"
for me. Even the smallest activity drains me and makes me feel
physically worse, not better. Which quite often will then make me feel
emotionally even worse than before. It's hard to remain "bright and
cheery" if you physically feel like a truck hit you.

I feel like firing back at some of these people, well, do you go to work
or go out to dinner with a 101 degree fever and your throw-up bucket at
your side in case you need to throw up?!? I would be so much better off
if medical professionals would accept that my physical energy and
physical abilities are severely limited and help me to get the most out
of the ability I do have, instead of making me constantly feel defensive
or encouraging me to overdo it, and completely crash.

Cathy
--

What good is an education if you are too sick to work? Support universal Healthcare.

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kdurkin3

Brain fog has been so bad for me lately I can't remember things from one
room to another.


Can I help it that I may not retain all of what he wrote, especially if I'm
exhausted? Or that I may not get every, single detail and carry it with me?

Or if friends sometimes tell me that they said something on the phone and I
say, "I believe you. I just don't remember it." How often I say that
lately.

I try my best. That's all I can do. Sometimes my brain is clicking along,
working, then it crashes. Often I can't figure out what happened or why.

I have to focus on only one thing at a time. And I do not have the focus I
used to have at all.

Kathy D.
----- Original Message -----
From: "CB" <cathyb0junk@NETSCAPE.NET> Newsgroups: alt.med.cfs
To: <CFS-L@LISTSERV.ICORS.ORG>
Sent: Friday, November 06, 2009 3:23 AM
Subject: Just a Thought - About Thought

cathyb0junk

Great doc. How much money do flights to S. Africa cost?


I can. I know exactly how hard it is to keep going when one is in
constant pain. Yay Mandi!! {{{{{{Hugs}}}}}} Cathy

--
What good is an education if you are too sick to work? Support Universal Healthcare.

kabbey55

I am absolutely not glad about the fact that you are sick and struggling.* But since you are, it helps me so much for you to share that online.* I'm fighting the good fight right now, but a series of one situation after another really knocked me down.* Right now along with everything else I am on my 4th round of antibiotics for an infection of the inside of my eyelids on both eyes.( 2nd time this year.) Two drs have looked at me like I'm an alien being and asked "How in the world did this happen?"* Well, if I knew how it happened I could possibly prevent it, couldn't I?* Duh.* I didn't even bother telling them about ME/CFS.* There's nothing to gain, I've found. **

I think one of the hardest things for me is that I look normal, even when I'm really sick. It doesn't show on the outside.* So why don't I go play tennis, people wonder.* Know what?* I'd love to go play tennis.* Not gonna happen.* Can't

Brain fog -- only people who haven't experienced it can say it's not real.* It's horrible. And it IS caused by multiple things.* My husband had a severe case of Lyme 3 years ago.* While he no longer has many severe flare-ups, he does experience brain fog if he's over stressed or too tired.* This guy was a Quality Assurance Engineer who won national awards.* And when the fog sets in he can't write a check.

Ah well...thanks again for sharing.* Hearing from others helps me feel less alone in this.

Kim

****


From: CB <cathyb0junk@NETSCAPE.NET>
Subject: Re: [CFS-L] Just a Thought - About Thought
To: CFS-L@LISTSERV.ICORS.ORG
Date: Friday, November 6, 2009, 5:25 AM Mandi Smallhorne wrote:


Great doc.* How much money do flights to S. Africa cost?

I can.* I know exactly how hard it is to keep going when one is in constant pain.* Yay Mandi!!* {{{{{{Hugs}}}}}} Cathy


-- What good is an education if you are too sick to work?* Support Universal Healthcare.

nonnyh

Hi-Just a thought on "brain fog": it seems to me that a deficiency of
cortisol can be implicated here. Cortisol levels go up and down and too much
stress, like from CFS, can use it up and then one is left with less and
"brain fog." Of course, the endocrinologists do not want to examine this
hypothesis given that cortisol is hard to measure and is always changing.
Nancy Harris Also I wonder about some CFSers having Primary Immune
Deficiency which causes all kinds of stuff.


On 11/6/09 7:25 AM, "cathyb0junk@NETSCAPE.NET" <cathyb0junk@NETSCAPE.NET>

mandiwrite

Oh, Cathy, thanks, you gave me a lift. I must say it helps so much that there is this small community who really get it!

Mandi

-----Original Message-----
From: Chronic Fatigue Syndrome discussion CFIDS/ME [mailto:CFS-L@LISTSERV.ICORS.ORG] On Behalf Of CB
Sent: 06 November 2009 01:25 PM
To: CFS-L@LISTSERV.ICORS.ORG
Subject: Re: Just a Thought - About Thought


Great doc. How much money do flights to S. Africa cost?


I can. I know exactly how hard it is to keep going when one is in
constant pain. Yay Mandi!! {{{{{{Hugs}}}}}} Cathy

--
What good is an education if you are too sick to work? Support Universal Healthcare.

__________ Information from ESET NOD32 Antivirus, version of virus signature database 4578 (20091106) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com


__________ Information from ESET NOD32 Antivirus, version of virus signature database 4584 (20091108) __________

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http://www.eset.com