Re: Be Open or Keep It Quiet?

[Guest guest]

>

> Frustrated with the stupid name.

> Frustrated with the lack of treatment.

>

> Lois

>

Lois, beautifully stated! There seems to be another problem in that

the medical community throws around terms for those diagnosed without

clarity. How many of us have been diagnosed with different names for

the same symptoms. One doctor might us CFS, another ME, a third

CFS/ME. Regardless of terms, we still endure the same struggles,

difficulty with medical treatment, biased public perceptions of our

challenge, etc.

By the way, my magic wand is on back order. If any of you have one,

maybe we could blast all this garbage into the next millenium.

To life!

DeAnn

[Guest guest]

>

> Lois,

You are absolutely right!!! My primary care doctor of more than 25

years still thinks I'm just trying to do too much AND I've been

through a great deal of mental health trauma. This is after his

younger associate worked with me to find out what was going on when

my symptoms hit me like a brick upon returning from a fabulous

vacation and my diagnosis was confirmed by Dr. Levine.

One of my friends suggested that I should seek mental health care

when I told her I had CFS. When I told her I've been seeing someone

in that field for a year before I experienced the initial symptoms,

her reponse was " I'm glad. "

I've decided that it's best to keep my diagnosis to myself and my

family. I believe the term fatigue is the problem. Unless someone

understands the severe nature of the fatgue, it's easy to attribute

the problem to other explanations for being tired.

Be well,

[Guest guest]

You are absolutely correct . I avoid talking about it but sometime when

you jut have to stop and sit down it would be nice to say " Well, I have ME²

It you said MS everybody would understand. I just get tired of explaining

and most people resist learning the fatigue is different from the syndrome.

³Yea, Yea, just get a double espresso and you¹ll be fine²

Hopefully, we will get the name changed and this aspect of the disease will

be a bit simpler.

Lois

>

>

>

>

>> >

>> > Lois,

>

> You are absolutely right!!! My primary care doctor of more than 25

> years still thinks I'm just trying to do too much AND I've been

> through a great deal of mental health trauma. This is after his

> younger associate worked with me to find out what was going on when

> my symptoms hit me like a brick upon returning from a fabulous

> vacation and my diagnosis was confirmed by Dr. Levine.

>

[Guest guest]

> >

> > Lois,

>

> You are absolutely right!!! My primary care doctor of more than 25

> years still thinks I'm just trying to do too much AND I've been

> through a great deal of mental health trauma. This is after his

> younger associate worked with me to find out what was going on when

> my symptoms hit me like a brick upon returning from a fabulous

> vacation and my diagnosis was confirmed by Dr. Levine.

>

> One of my friends suggested that I should seek mental health care

> when I told her I had CFS. When I told her I've been seeing

someone

> in that field for a year before I experienced the initial symptoms,

> her reponse was " I'm glad. "

>

> I've decided that it's best to keep my diagnosis to myself and my

> family. I believe the term fatigue is the problem. Unless someone

> understands the severe nature of the fatgue, it's easy to attribute

> the problem to other explanations for being tired.

>

> Be well,

>

I quit using the term " fatigue " all together. Now, I use " drop dead

exhaustion " as it really is how I feel. I've been told that's not

medically accurate, but simply agree and clearly state it might not

be medically accurate, but it is true to life.

Oh, if only patients could help write the symptoms page.

Happy 4th!

D