Re: definition of gradual onset

[Guest guest]

No one could ever decide if my case was rapid or gradual. Looking

back I would say gradual. I got very sick in about two weeks' time.

But I had symptoms prior to that for 20 years because I had LYME

disease. Lyme is like syphillis - varying symptoms over time and NO

good tests to diagnose. I continue to maintain that most cfs and fms

is chronic borrelia with a few other infections thrown in - all of

which are about impossible to diagnose.

a Carnes

>

> I think gradual onset is defined best as an exclusion of sudden

> onset. People with sudden onset supposedly can actually state the

day

> or week they became sick, and often became bedridden for a week or

so

> right away.

>

> I say I was gradual. The first clue, which only came in

retrospect,

> was that one summer I took a cruise which went through the China

Sea.

> Everybody on board from the crew to the ship's doc (who initially

> said it was seasickness in the storm we were having, until he

himself

> got it), to a person, got a flu' except I didn't. I attributed it

to

> my great immune system; now I realize it was my then highly

> upregulated immune system, although I may have got a virus that

has

> remained, or Larry Klapow's roundworm, or something like that.

>

> Over the next year, I first had what I thought was extraordinary

jet

> lag coming back from Indonesia to Atlanta (about 24 hours of

travel

> and about 12 time zones) lasting a few weeks. Although I went back

to

> my 'three steps high' step aerobics 5x a week I got thoroughly

> exhausted instead of exhilarated from the exercise and over the

next

> several months went from three steps to two, to one, to just the

> platform, to none at all, to just stretching. I'd do the aerobic

> 'warm-ups' and became colder rather than warmer.

>

> Some time during this I became dizzy when I walked around the

office

> and would be unusually startled by ordinary sounds like the

> photocopier being used. I think it was almost a year later when I

> became utterly intolerant to ingested alcohol, getting white,

sweaty

> and faint when I had half a beer.

>

> It was about then perhaps that I had my blood pressure taken for

the

> first time since the trip and it was only 90 over 65. It was just

a

> down hill slide. At some point my legs began to feel very heavy

and

> achy and I didn't know what to attribute it to. And I plowed on

> (people with sudden onset usually are unable to 'plow on'.).

> Eventually I read about chronic fatigue syndrome in the Wall

Street

> Journal and thought both 'aha' and oh-oh'.

>

> I dumped Kaiser Permanente HMO (in fairness, the guy did a tender

> points check, which I didn't even realize he was doing until I

read

> more about fibro later ['tho' I don't know if he did it correctly;

> the memory is blurry), but he said all he could do in 'these

cases'

> was refer people to 'mental health' to help them 'cope' better,

and I

> thought my coping skills were quite good already) at the end of

the

> year when I could switch over to another medical insurance

program,

> and had in the meantime read all I could about the extraordinary

> exhaustion I felt, I figured I had a thyroid problem, an adrenal

> problem or CFS.

>

> As soon as I could I saw a non-HMO endocrinologist who happened

> also to be a CDC sentinel doctor enrolling people in the first

CFS

> study. She did a lot of endocrine testing and concluded I had CFS.

> The mental confusion, forgetfulness, getting lost on my own

> commute, having trouble finding my car in my own parking lot,

etc.

> came in somewhere and these symptoms came gradually so nothing was

as

> alarming as when people have had sudden onset, although in

> retrospect, I was getting pretty bad.

>

> The sore throats and swollen glands also kind of crept in

unnoticed

> until they had been there a while. I don't know when the memory

> problems started; in the beginning, I thought, " well, thank God, I

> don't have any problems with my intellect " , which was essential to

my

> job , but the word-finding problems, the dyscalculia, and such,

came

> in bit by bit (when I went on disability they sent me to a

> psychologist who confirmed the typical 20-point drop in my

functional

> IQ without depression or other mental illness). And the headaches

> came, but again I can't really define when. It just piled up. With

> sudden onset, I don't think people wonder what is happening to

them:

> they wonder what -happened- to them; it isn't a process but a

sudden collision.

>

> With a extraordinarily good secretary and understanding boss

> (fortunately I had a lot of goodwill built up over more than 15

> years), I was allowed to work and had almost a full year of

> accumulated sick leave, for another year, go in late, come home

> early, nap on a sofa in my office at lunchtime, etc. and I held on

at

> work until there seemed to be just no point in trying, so I went

on a

> 4-month medical leave, then another four months, then long-term

> disability. All this contrasts with the sudden onset people who

> became sick, usually bedridden, one day, with all the symptoms at

> once, and never recovered. The 'sudden onset' group may have held

out

> hope for recovery, which only -gradually- dimmed, but I think most

of

> them had all they symptoms slam them into bed nearly immediately.

>

> I'd be interested to hear other accounts, but this my

understanding.

>

> Could someone please define gradual onset?I mean how symptoms

differ from

> >sudden onset. I am having difficulty to decide whether I am

gradual or

> >sudden.

> >thanks.

> >Nil

>