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

[Guest guest]

Jane

I have had ADD since I was a little kid, but I was not diagnosed with

anything even though ADHD was all the rage because I had no hyperactivity.

They used to say that kids only got ADHD and adults would get the diagnosis

'Adult ADD', but I had childhood ADD.

FOR ME the symptoms of ADD varied from a five out of ten to seven or eight

out of ten without medication and with medication my symptoms varied from

non-existent to a four or five out of ten, but was usually between two out

of ten and three out four out of ten.

The attention problems that I have now (since developing CFS/CFIDS) are

usually between a six out of ten and an eight or nine out of ten, but I

quite frequently hit a ten out of ten (despite Adderall or Concerta, tried

Concerta for a week last year). Rarely, my attention issues drop to a four

out of ten.

Despite the Adderall no longer helping with my attention issues, I continue

to take it for my narcolepsy. Well, I haven't had any in about a month

because of the shortage of all Adderall, Adderall XR, and generics. There

are also shortages of methylphenidate products (i.e. Ritalin, Concerta,

Metadate, Methylin, etcetera).

My point is that CFIDS (like fibromyalgia) can cause severe brain/mental

fog (cognitive deficiencies) that are similar to ADD and ADHD. In

fibromyalgia, it is called 'Fibro-fog', but since CFS is more of a

description (and a poor one at that) than a name, I have no idea what to

call the associated fatigue, CF-fog? (wow, that sounds stupid)

I TRUELY BELIEVE THAT POOR ATTENTION SPAN IS A SYMPTOM OF CFIDS/CFS

Steve M in PA, age 22

Married with 3 year old daughter

Duragesic 300mcg/hr (q48hr)

Methadone 45mg/day

Actiq-600 (4/day)

OxyIR 30mg (6/day)

Grade II DIPG (Diffuse Intrinsic Pontine Glioma)

Comorbid Fibromyalgia & CFIDS

Probable RSD

Normal TSH Hypothyroidism

" Pain makes us make bad decisions. Fear of pain is almost as big a

motivator. " -House MD

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.

[Guest guest]

On Jan 13, 2012, at 6:10 PM,

" Jane M " wrote:

> IS this a symptom .. being VERY easily distracted? Having a hard time

concentrating??

> Thanks!!

> Jane, the one with the hound

> NYC

Becoming easily distracted (rambling, trouble staying on topic talking to

doctors and friends or at meetings, trouble concentrating to do paperwork,

trouble listening successfully to books on tape, trouble with comprehension,

etc) is a major symptom of all these conditions, CFS-ME, FMS and Orthostatic

Intolerance, Lyme, GWS, all of 'em overlap in trouble concentrating,

remembering, as well as having major trouble breaking concentration once into

something.

FMS people call it Fibromyalgia fog.

CFS & OI people call it cognitive dysfunction.

I personally like to call it " cog fog " since it's the symptom most people with

these overlapping conditions share.

My theory of cog fog is dysfunction of the autonomic nervous system causes

inadequate fluids to get to the brain and the neuron synapses needed for memory

and information processing have trouble taking place, especially when we are

under stress. (I also take Omega 3 Salmon Oil to help blood get through tiny

capillaries in neck to brain. Sitting up to read, head tilted toward table, also

discourages blood getting to brain, which is, I suspect, why I have better

comprehension reading while reclining.)

Reclining with head back, feet up, helps a tremendous amount. I find my memory

may escape me but it comes back when I am more relaxed. That means there may be

no permanent memory loss, only the lack of fluids for proper synapses at

stressful times like during doctors' appointments.

Makes us look crazier than normal to our doctors.

That's why my more CFS- OI-experienced internist makes hour appointments with

people like me. He evaluates my behavior at the beginning, the middle and the

end of appointments. By the end of the hour, I am waaasy more relaxed and

cogent.

To read more about cog fog, try this webpage while reclining with feet up and

head back. Maybe print the long pages rather than sit up at computer to read:

http://cfsnova.com/qnaReading.html

toni

cf-alliance.tripod.com/

from iPodTouch

[Guest guest]

Difficulty concentrating/getting distracted/bad memory is very common with ME or

CFS perhaps your doctor might consider sending you for neuropsychometric

testing. It is NOT to do with " you are faking it " type stuff and for me it was

VERY helpful and it clearly showed i have a problem with the exact symptoms you

describe.

Normally a neuropsychologist does the testing.

I hope this helps cause it did with me.

from erin

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

From: Jane M

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]

Thank you for your information. I always assumed my brain fog with all its

symptoms, was a symptom of CFIDS until I started using the wrong word when

speaking. I would replace a correct word with a similiar one. Then I began to

think it might have a physical rather than CFIDS induced stress symptom. Non of

this occurred before I got sick. I do believe that my body does not circulate

blood properly.

Does the omega 3 have show definate improvement?

Wish my dr would schedule that much time. she is part of a larger medical systom

that keeps her usually a few hours behind schedule.

>

> 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...)

> I thought perhaps this MIGHT be pertinent here since at a point when she had

me on this stuff the nurses at my CFS/ ME doc's office told me to be sure to

tell her to take me OFF it should I get the headaches. I was MORE than thrilled

to stop taking the things and call her to tell her since the side effects were

so bad. This was awhile ago, but had never asked about this 'symptom' here

before.

> IS this a symptom .. being VERY easily distracted? Having a hard time

concentrating??

> Thanks!!

> Jane, the one with the hound

> NYC

>

[Guest guest]

Since there doesn't seem to be an answer for any of these syptoms, and others

with CFIDS/ME have them also, so they are obviously a symtom, do we really need

to go to the effort of medical recognitions individually? I had an MRI of my

brain and found out other things that would not have been found otherwise., but

it really didn't HELP me any. Why did I even make the effort. I'll reserve my

energy for something more productive.

>

> 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...)

> I thought perhaps this MIGHT be pertinent here since at a point when she had

me on this stuff the nurses at my CFS/ ME doc's office told me to be sure to

tell her to take me OFF it should I get the headaches. I was MORE than thrilled

to stop taking the things and call her to tell her since the side effects were

so bad. This was awhile ago, but had never asked about this 'symptom' here

before.

> IS this a symptom .. being VERY easily distracted? Having a hard time

concentrating??

> Thanks!!

> Jane, the one with the hound

> NYC

>

[Guest guest]

Thank you. Definately sounds like its worth a try. I know that I should be

getting Omega 3's, but it got lost in my herbal shuffle. I agree with the brand

issue. Thanks for the referrals. Hope you continue to improve.

>

> 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...)

> I thought perhaps this MIGHT be pertinent here since at a point when she had

me on this stuff the nurses at my CFS/ ME doc's office told me to be sure to

tell her to take me OFF it should I get the headaches. I was MORE than thrilled

to stop taking the things and call her to tell her since the side effects were

so bad. This was awhile ago, but had never asked about this 'symptom' here

before.

> IS this a symptom .. being VERY easily distracted? Having a hard time

concentrating??

> Thanks!!

> Jane, the one with the hound

> NYC

>

[Guest guest]

I guess the answer is that at least for me in Adelaide australia having it

recognised that I have cognitive difficulties ON PAPER where she actually stated

that I was NOT malingering that there was NO evidence that i was faking and that

it was also to do with REAL fatigue it means for ME thats one area where all the

drs (and there are too many to count) who have said I AM faking it IS in my head

etc etc can just go jump!!!!! Because on paper the neuropsychologist wrote the

opposite!!! for me the validation is worth the energy. for others who have the

validation from their drs anyways maybe its not worth it i would say its up to

the individual. there may also be treatments but the place i had it done was

free (at a public hospital. the public system is free but sometimes limited) and

they could not offer any treatment for that i would have to pay lots and go

private but like i say for me the validation is definately worth it

Oh and the other thing is that cognitive difficulties can sometimes deteriorate

so for me the testing done serves as a baseline which is then repeated every 2

or 3 years or earlier if deemed necessary and will record changes in this area.

So definately not wasted for me. I hope this helps....

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

From: myoldmill

Since there doesn't seem to be an answer for any of these syptoms, and others

with CFIDS/ME have them also, so they are obviously a symtom, do we really need

to go to the effort of medical recognitions individually? I had an MRI of my

brain and found out other things that would not have been found otherwise., but

it really didn't HELP me any. Why did I even make the effort. I'll reserve my

energy for something more productive.