Re: Question on 'Mind' Symptom ...?

[Guest guest]

Yes, validation is, and should be, individual. and, timely. I remember how I had

felt an emmense relief when I was given a valid diagnoses. I have probably

become jaded and looking inward after all these years of seeking validation from

a community that is generally cluless.I apologige if I have offended you.

>

> Hi all,

> I am trying to figure out if THIS is a symptom of 'our disease' or .. if this

is simply an awful-to-live-with quirk of my own...

> I call this the Attention Span of a Squirrel/ Fruit Fly/ (fill in your own)

syndrome...

> I have a difficult time concentrating on anything. Or .. I can become

distracted fairly easily.

> I have a sort of sense that MAYBE others MIGHT have this symptom for the

following reason... Have a shrink (antidepressants and the like) who was -until

I simply went into refusnik mode due to side effects- always attempting to

'diagnose' me as someone who 'needed' Strattera or Concerta or similar stuff (as

long as it didn't contain speed, <smile>).

> She had some idea that MAYBE I was ADD however I do not fit ADD.Never have!

And the damn pills made me so miserable (not to mention the headaches from it

and other side effects; awful!). (Never did like 'speed' when I was using

Recreational drugs which COULD be why the bad effects but then again...)

[Guest guest]

No you didn't offend me as i say its completely up to the person what they

choose to do/not to do. I have a complicated history that goes beyond the

already complex dx of CFS/ME/FM. Its one thats left me completely and utterly

frustrated, if i didn't need them i would choose to never see a dr ever

again!!!! But thats not realistic for me and i need prescriptions if nothing

else.

I am working towards getting a better more understanding and hopefully one who

validates everything GP and working towards a full and proper dx of what is

going on. I cant explain it anymore than that but hopefully one day i will have

the validation i seek, be treated better etc etc

from erin

----- Original Message -----

From: myoldmill

Yes, validation is, and should be, individual. and, timely. I remember how I

had felt an emmense relief when I was given a valid diagnoses. I have probably

become jaded and looking inward after all these years of seeking validation from

a community that is generally cluless.I apologige if I have offended you.

[Guest guest]

Re: Brainfog, Fibrofog, Cognitive Impairment, etc.

My mother and three of her sisters had Alzheimer's. In 2007 my stress levels

were high and my fibrofog became incredibly worse. I was very concerned that I

was developing Alzheimer's or dementia.

I had a baseline neuropsychological evaluation done. The results showed that

my short-term memory loss, word and number dyslexia, and cognitive impairment

were were likely related to normal aging, my chronic pain from fibromyalgia and

osteoarthritis, my high blood pressure and high cholesterol (caused by the

chronic pain), my sleep apnea (undiagnosed for 10 years but had been on CPAP

therapy for seven years at the time of the evaluation), my restless legs

syndrome/Willis-Ekbom Disease (undertreated at the time of the evaluation), and

my psychological issues of depression and PTSD. It was noted that fatigue and

stress contributed to my increase of fibrofog and cognitive impairment.

I was given the following recommentations to improve my memory and cognitive

function:

Recommendations:

Use a notebook/planner to maintain all information.*

Carry it at all times

Write in it regularly

Refer to it on a daily and weekly basis

* I keep a 4 " x 6 " spiral bound notebook and a purse calendar in my purse to

write down information and reminders. When I get home, I transfer the

information to my 8½ " by 11 " spiral bound notebook and calendar on my desk. I

write on only one side of the page of each notebook and cross off each item as

it is completed. When all items are crossed off, I tear out the page and toss

it. Hooray! Completed tasks!

Use reminder notes and checklists for

Plans for the day

Upcoming appointments

Request spoken important information be repeated to me.

Repeat back the information aloud in my words,

to ensure that I have adequately understood and

to facilitate my memory of the information.

Write it down in my notebook.

Regularly engage in cognitively challenging activities

Reading, Crosswords, Sudoku, Computer Games

Maintain a structured and scheduled daily routine

involving the above and other enjoyable activities.

Work in a quiet and distraction free environment.

Focus on one task at a time.

Complete it entirely before moving on to the next task.

Take regular breaks from long tasks.

Use a timer to schedule break beginning and ending.

When I am fatigued, in pain, or stressed, modify my activities accordingly.

 

When I follow the recommendations, I am amazed at how much less the fibrofog and

cognitive impairment affect me. It's been almost 5 years since I was given the

recommendations, and I'm still struggling to implement them regularly. I have

OCD and ADD (what a great combination!), and once I'm started on a task, I

forget everything else I'm supposed to be doing. Timers help tremendously, and I

have one in every room in the house. When I remember to set a timer, it helps me

to stay on task and reminds me to take breaks. I'm getting much better at using

the timers because I function better when I do.

I hope some of these suggestions help some of you. Believe me, I know how hard

it is to function when I'm in pain and/or stressed.

My saving grace is that I teach the Arthritis Foundation Exercise Program three

times a week. That gentle exercise is what keeps me going. Right now I have only

two people in the class, but they've improved so much in the few months they've

been participating that if I have to miss a session due to a doctor appointment

or if they have to miss a session, we make it up. You can go to

www.arthritis.org, enter your zip code if you're in the U.S. click on offerings

and programs, and find out if there is one near you. If there isn't or if you're

not in the U.S., go to the store on the web site. They sell DVDs of the exercise

programs and instruction books for exercising.

Thanks for being here and sharing all your information. It truly helps to know

that I'm not alone in my mind and body dysfunction.

kateinmo

[Guest guest]

Hi all,

No!! I've never been AT ALL offended. The only thing I got up in arms about was

the mention of AIDS/ HIV. And ,.. here I am going off topic and perhaps opening

a can of worms, damn it. It's just that I've had so many friends since the late

'80's die, and in many cases from the beginning. AND .. some are still living

with it. In one case a friend's daughter (she was born with it before her mom

and dad were even aware one of them was positive)now tests NEGATIVE. SHE is

doing great on full scholarship in college and this after much of her childhood

ill and in and out of hospitals. She .. just happened along at a time when T

cell treatments came in and is fortunate. No easy answer there. BUT .. back to

the subject! I go 'off topics' easily and this drives those around me NUTS. It

is the reason for the Strattera, etc. I have never had a problem about my

illness being taken seriously since my main doctor who treats it takes this VERY

seriously and has long been a voice of reason on a public level (Dr

Enlander). I have, however, gotten into it with some around me, those without

medical training, and those who do not know anything about this disease who have

other training. It's a bit like speaking to a slab of concrete in some cases.

Screw 'em! I know and this is what's most important. There are also all of YOU,

thank goodness!!!

Thanks again,

Jane, the one with the hound

NYC

> >

> > Hi all,

> > I am trying to figure out if THIS is a symptom of 'our disease' or .. if

this is simply an awful-to-live-with quirk of my own...

> > I call this the Attention Span of a Squirrel/ Fruit Fly/ (fill in your own)

syndrome...

> > I have a difficult time concentrating on anything. Or .. I can become

distracted fairly easily.

> > I have a sort of sense that MAYBE others MIGHT have this symptom for the

following reason... Have a shrink (antidepressants and the like) who was -until

I simply went into refusnik mode due to side effects- always attempting to

'diagnose' me as someone who 'needed' Strattera or Concerta or similar stuff (as

long as it didn't contain speed, <smile>).

> > She had some idea that MAYBE I was ADD however I do not fit ADD.Never have!

And the damn pills made me so miserable (not to mention the headaches from it

and other side effects; awful!). (Never did like 'speed' when I was using

Recreational drugs which COULD be why the bad effects but then again...)

>

[Guest guest]

Hey there ,

sounds as if you have things hard enough without the IM-proper diagnosis and the

NON-validation. those things are just .. so essential. I'm so damn sorry that

you do NOT have this!! not fair as we ALL -I think- have complications in our

chemical (brain chemical?) make up having -at least in part!- something to do

with the illness and .. for SOME of us, such as myself, the former chemical

experiment in my wild child years (regret that for this reason!). I do not know

where you are located, but I do hope that you can find someone and that the

insurance -whatever your circumstance is- can afford that you see the proper

person.

Best to you,

Jane, the one with the hound,

NYC

>

> No you didn't offend me as i say its completely up to the person what they

choose to do/not to do. I have a complicated history that goes beyond the

already complex dx of CFS/ME/FM. Its one thats left me completely and utterly

frustrated, if i didn't need them i would choose to never see a dr ever

again!!!! But thats not realistic for me and i need prescriptions if nothing

else.

>

> I am working towards getting a better more understanding and hopefully one who

validates everything GP and working towards a full and proper dx of what is

going on. I cant explain it anymore than that but hopefully one day i will have

the validation i seek, be treated better etc etc

>

> from erin

> ----- Original Message -----

> From: myoldmill

>

>

> Yes, validation is, and should be, individual. and, timely. I remember how I

had felt an emmense relief when I was given a valid diagnoses. I have probably

become jaded and looking inward after all these years of seeking validation from

a community that is generally cluless.I apologige if I have offended you.

>

[Guest guest]

Hi, Jane with the hound, don't blame your wild child years. I didn't 'do' any of

the things the wild child, , was running with, yet I have what my neuro

called a text book case of CFIDS. Including brain fog and major adult ADD

symptoms. But, I do think being exposed to so many chemicals in life has alot to

do with it. Growing up on LI in the 50's and 60's exposed me to alot of stuff.

If you were in the city, I'm sure you got as much, if not more. It still amazes

me that our bodies are able to survive what we were exposed to, much less

leaving us with any brain.

> >

> > No you didn't offend me as i say its completely up to the person what they

choose to do/not to do. I have a complicated history that goes beyond the

already complex dx of CFS/ME/FM. Its one thats left me completely and utterly

frustrated, if i didn't need them i would choose to never see a dr ever

again!!!! But thats not realistic for me and i need prescriptions if nothing

else.

> >

> > I am working towards getting a better more understanding and hopefully one

who validates everything GP and working towards a full and proper dx of what is

going on. I cant explain it anymore than that but hopefully one day i will have

the validation i seek, be treated better etc etc

> >

> > from erin

> > ----- Original Message -----

> > From: myoldmill

> >

> >

> > Yes, validation is, and should be, individual. and, timely. I remember how

I had felt an emmense relief when I was given a valid diagnoses. I have probably

become jaded and looking inward after all these years of seeking validation from

a community that is generally cluless.I apologige if I have offended you.

> >

>

[Guest guest]

Hi, Jane with the hound, don't blame your wild child years. I didn't 'do' any of

the things the wild child, , was running with, yet I have what my neuro

called a text book case of CFIDS. Including brain fog and major adult ADD

symptoms. But, I do think being exposed to so many chemicals in life has alot to

do with it. Growing up on LI in the 50's and 60's exposed me to alot of stuff.

If you were in the city, I'm sure you got as much, if not more. It still amazes

me that our bodies are able to survive what we were exposed to, much less

leaving us with any brain.

> >

> > No you didn't offend me as i say its completely up to the person what they

choose to do/not to do. I have a complicated history that goes beyond the

already complex dx of CFS/ME/FM. Its one thats left me completely and utterly

frustrated, if i didn't need them i would choose to never see a dr ever

again!!!! But thats not realistic for me and i need prescriptions if nothing

else.

> >

> > I am working towards getting a better more understanding and hopefully one

who validates everything GP and working towards a full and proper dx of what is

going on. I cant explain it anymore than that but hopefully one day i will have

the validation i seek, be treated better etc etc

> >

> > from erin

> > ----- Original Message -----

> > From: myoldmill

> >

> >

> > Yes, validation is, and should be, individual. and, timely. I remember how

I had felt an emmense relief when I was given a valid diagnoses. I have probably

become jaded and looking inward after all these years of seeking validation from

a community that is generally cluless.I apologige if I have offended you.

> >

>

[Guest guest]

Dear Kateimo,

Hope I can call you this... My mom -with whom I had a difficult relationship my

entire life- also had Alzheimer's towards the end of her life. Although she had

5siblings, none lived as long as did she, so I don't KNOW if anything about that

line of medical history. On dad's side, however, it was the opposite. She did

not become ill until her 90's. You can imagine how I felt the last time I saw my

shrink -this is how I refer to the psych, not the therapist- and SHE suggested

prescribing that Alzheimer's drug (forgot the name <smile>)which is often in ads

on television. I .. sort of flipped on THAT suggestion, however at my ME/ CFS

doc's office the nurses there kind of .. looked at each other as if wondering if

it might help...? I currently take two things neither of which are 'drugs' for

memory. Or help with memory... Catapult (contains Cat's Claw among other things)

and Lectrolyte (this is for Fibro pain, but also helps memory with a cumulative

affect sort of...). ALL of your suggestions make SUCH good sense! I've even

heard some of them before.I am going to copy down the list here and DO them!

One kind of exercise I wish I had access to here would be a swimming pool;

aquasize. I've heard good things about this from a friend who teaches it. (SHE

is in amazing shape!)I also have -I mentioned this?- same psych issues and

REALLY want to move as so much 'stuff' would be allieviated. We have the area

with the most noise complaints in Manhattan. In fact, as I type, THE most

obnoxious, boring, dreadful DRUM-bass lines are throbbing up through the floor.

(Talk about no taste...!) But .. then, the upstairs people are quiet (the others

moved out) and .. wait until I get something new to hook up MY speakers to...

(Downstairs is fairly new, and ceased and desisted blasting the backyard area

out his window after getting a taste of his own medicine BACK from the neighbors

at the opposite end of our courtyard). Ah yessss... And so many pay so much to

live here.

(<smirk>) Thanks again for all your excellent info--

Jane, the one with the hound

>

> Re: Brainfog, Fibrofog, Cognitive Impairment, etc.

>

> My mother and three of her sisters had Alzheimer's. In 2007 my stress levels

were high and my fibrofog became incredibly worse. I was very concerned that I

was developing Alzheimer's or dementia.

>

> I had a baseline neuropsychological evaluation done. The results showed that

my short-term memory loss, word and number dyslexia, and cognitive impairment

were were likely related to normal aging, my chronic pain from fibromyalgia and

osteoarthritis, my high blood pressure and high cholesterol (caused by the

chronic pain), my sleep apnea (undiagnosed for 10 years but had been on CPAP

therapy for seven years at the time of the evaluation), my restless legs

syndrome/Willis-Ekbom Disease (undertreated at the time of the evaluation), and

my psychological issues of depression and PTSD. It was noted that fatigue and

stress contributed to my increase of fibrofog and cognitive impairment.

[Guest guest]

Dear Kateimo,

Hope I can call you this... My mom -with whom I had a difficult relationship my

entire life- also had Alzheimer's towards the end of her life. Although she had

5siblings, none lived as long as did she, so I don't KNOW if anything about that

line of medical history. On dad's side, however, it was the opposite. She did

not become ill until her 90's. You can imagine how I felt the last time I saw my

shrink -this is how I refer to the psych, not the therapist- and SHE suggested

prescribing that Alzheimer's drug (forgot the name <smile>)which is often in ads

on television. I .. sort of flipped on THAT suggestion, however at my ME/ CFS

doc's office the nurses there kind of .. looked at each other as if wondering if

it might help...? I currently take two things neither of which are 'drugs' for

memory. Or help with memory... Catapult (contains Cat's Claw among other things)

and Lectrolyte (this is for Fibro pain, but also helps memory with a cumulative

affect sort of...). ALL of your suggestions make SUCH good sense! I've even

heard some of them before.I am going to copy down the list here and DO them!

One kind of exercise I wish I had access to here would be a swimming pool;

aquasize. I've heard good things about this from a friend who teaches it. (SHE

is in amazing shape!)I also have -I mentioned this?- same psych issues and

REALLY want to move as so much 'stuff' would be allieviated. We have the area

with the most noise complaints in Manhattan. In fact, as I type, THE most

obnoxious, boring, dreadful DRUM-bass lines are throbbing up through the floor.

(Talk about no taste...!) But .. then, the upstairs people are quiet (the others

moved out) and .. wait until I get something new to hook up MY speakers to...

(Downstairs is fairly new, and ceased and desisted blasting the backyard area

out his window after getting a taste of his own medicine BACK from the neighbors

at the opposite end of our courtyard). Ah yessss... And so many pay so much to

live here.

(<smirk>) Thanks again for all your excellent info--

Jane, the one with the hound

>

> Re: Brainfog, Fibrofog, Cognitive Impairment, etc.

>

> My mother and three of her sisters had Alzheimer's. In 2007 my stress levels

were high and my fibrofog became incredibly worse. I was very concerned that I

was developing Alzheimer's or dementia.

>

> I had a baseline neuropsychological evaluation done. The results showed that

my short-term memory loss, word and number dyslexia, and cognitive impairment

were were likely related to normal aging, my chronic pain from fibromyalgia and

osteoarthritis, my high blood pressure and high cholesterol (caused by the

chronic pain), my sleep apnea (undiagnosed for 10 years but had been on CPAP

therapy for seven years at the time of the evaluation), my restless legs

syndrome/Willis-Ekbom Disease (undertreated at the time of the evaluation), and

my psychological issues of depression and PTSD. It was noted that fatigue and

stress contributed to my increase of fibrofog and cognitive impairment.