newbie help/questions

[Guest guest]

Okay, I'm not really a newbie exactly.been lurking for a while. I've been

dealing with extreme chronic fatigue as a symptom of a multitude of other

illnesses.

Well the local " specialist " on autonomic nervous system disorders informed

me yesterday that he really isn't certain that my problem really is

autonomic neuropathy. That yes, my body's system is behaving out of the

norm, but he doesn't see strong enough clinical test results to indicate an

actual disease/disorder. He thinks my system is restoring itself to

abnormal " normals " and that makes the responses inappropriate. Even he had

difficulty in trying to explain it, but I understood because I've been

living with this for 15 years and I KNOW what he means. He then says it

might just simply be CFS. But he knows of no doctors in his hospital system

who actually specialize in CFS any longer and that we still have a lot of

things to work on and normalize (sleep patterns, diabetes,

bipolar/depression, FM, etc) that may eventually resolve the issue or clear

the field enough to allow us to find a more appropriate diagnosis/treatment.

So I'm sitting here exhausted and overwhelmed just thinking about trying to

even approach the research and adjusting my thoughts and actions to the

possibility of CFS. My PCP told me just 4 weeks ago that she didn't think

anyone really diagnosed CFS any longer, and nobody treated as such. Then

the neurologist yesterday says yes, it definitely exists, but nobody locally

he knows of specializes with it.

My questions right now are:

1) What kind of doctor treats you? What kind of doctor have you gotten

the best, most consistent/knowledgeable response from? (Specialty?)

2) Is there any one or two places online where I can find a good

summary of the ins and outs of symptoms (besides fatigue <smile>) of CFS and

most current thoughts on appropriate treatments?

3) Has anyone tried light box therapy and did it help any? (I've been

considering trying it for the bipolar/depression, and thinking it might help

reset my circadian rhythms as well)

Thanks! I've been dealing with fatigue and pain and orthostatic issues for

a long time. I know that the better I control each component of my varied

chronic conditions the better able I am to function. I also have finally

learned that taking it slowly and not pushing too hard is a definite key.

I'm dealing with the same big picture, but the lighting and shadows have

changed and I'm hoping I might discover something previously totally missed

or simply overlooked as seemingly unimportant or unrelated.

Suzanna

[Guest guest]

Hi Suzanna,

I think a doctor you like and trust who likes and trusts you is the

best doctor to see for any medical issue. I sought testing once for

too thick blood once, had my ophthalmologist write the prescription

for the test. He did so because he trusts me and likes me and respects

my curiosity and research into ways to help myself to manage my own

care. He's retired now and i miss him, but have 2 other docs who

respect me, seem to like me some.

Here's a page of Q & As about problems of the autonomic nervous system

with concepts and symptoms and links to more and tips on how to self

manage:

http://www.geocities.com/cfsnova/qna.html

While we wouldn't really wish this on anyone, it is comforting to know

others suffering similarly with ideas about how to cope after years

with symptoms, no?

Best wishes,

toni

> My questions right now are:

>

> 1) What kind of doctor treats you? What kind of doctor have

> you gotten

> the best, most consistent/knowledgeable response from? (Specialty?)

>

> 2) Is there any one or two places online where I can find a good

> summary of the ins and outs of symptoms (besides fatigue <smile>) of

> CFS and

> most current thoughts on appropriate treatments?

>

> Suzanna

[Guest guest]

Your symptoms and " issues " sound very similar to mine. Those are all good

questions that I too have an interest in seeing the answers too. Thanks for

asking for all of us " lurkers " out there :^)

I will say the one thing that helped me with my depression/bp that I've suffered

with for 25+ years is when I started taking the Omega Oils.

I'm not into the supplements but I can't say enough how much of a difference two

pills a day makes. If you haven't tried them, you must! I can go downhill in a

matter of a few days if I stop taking the Omega...it's simply amazing!!

I'm off all psych meds for the first time in 20 years...can't say I'll stay that

way but it is nice to lose the 20lbs of " zoloft " and " serequel " weight. The

sleep and pain has suffered a little without the zoloft...but I don't cry 24/7

without it.

xoxoxo

>

> Okay, I'm not really a newbie exactly.been lurking for a while. I've been

> dealing with extreme chronic fatigue as a symptom of a multitude of other

> illnesses.