[email protected]

In a message dated 6/6/02 6:11:00 PM Central Daylight Time,
[email protected] writes:

<< The symptoms never went away, and after various guesses and many tests,
we finally have a diagnosis of Fibromyalgia. I won't go into the details,
but it is a chronic illness, >>

I don't know a whole lot about this disease...I have heard, however, that it
can be a catch-all for diseases that the docs just can't diagnose. If that is
true, couldn't she have something that they just don't know how to test for?
I assume that many different viruses get lumped under the term "Fibromyalgia"
if the doctors can't figure out what a person has.
I'm so sorry for her suffering, that must be so hard.
Have you looked into alternative remedies that treat the entire body, not
just the disease?
Ren

Lisa Breger

<<I don't know a whole lot about this disease...I have heard, however, that it
can be a catch-all for diseases that the docs just can't diagnose>>

I have to wonder the same thing, and I ask every doc we see if there is anything else we can test for. I also ask to re-test for certain illnesses, like Lyme disease, that have been known to report false negative. But, from what I have read so far, it seems there is a ton of research, here and abroad, indicating many abnormalities found only in fibromyalgia and chronic fatigue sufferers. These would include low blood flow to certain areas of the brain, disrupted growth hormone secretion, raised levels of substance P, deficiencies in serotonin, and much more. (See how much I learned unschooling myself!)

We are also seeing a naturopathic doctor, who is treating Tiffany with a homeopathic remedy. I'm grateful to have that option available to us.

Thanks for the support!

Lisa




[Non-text portions of this message have been removed]

Tia Leschke

><<I don't know a whole lot about this disease...I have heard, however,
>that it
>can be a catch-all for diseases that the docs just can't diagnose>>
>
>I have to wonder the same thing, and I ask every doc we see if there is
>anything else we can test for. I also ask to re-test for certain
>illnesses, like Lyme disease, that have been known to report false
>negative. But, from what I have read so far, it seems there is a ton of
>research, here and abroad, indicating many abnormalities found only in
>fibromyalgia and chronic fatigue sufferers. These would include low blood
>flow to certain areas of the brain, disrupted growth hormone secretion,
>raised levels of substance P, deficiencies in serotonin, and much more.
>(See how much I learned unschooling myself!)

It sounds like you've done lots of research. I'm assuming she's had her
tender points checked. That's really the only way to diagnose it, after
everything else has been ruled out. I don't think that fibro is such a
catch-all disease anymore. More and more docs are learning about it. I
did wonder, though, since you said it started after a virus and that she
had been completely bedridden for so long. That sounds more like chronic
fatigue syndrome, but they're so closely related that many think they're
the same. One difference is that people with CSF are often
exercise-intolerant, whereas many people with fibro are helped by very
small amounts of gradually increasing exercise.

Have you come across Devon Starlanyl's book? (I think that's spelled
right.) She's a physician with fibro and knows a lot about it. I sort of
recommend alt.med.fibromyalgia newsgroup but you have to be *very*
selective about what you read there. It's very high traffic, and they tend
to get into more than their share of flame wars. I go through the headers
and just download topics that interest me. (And the jokes tend to be
good. Chronic illness newsgroups tend to have lots of good
jokes. Laughter is healing.)

Feel free to write privately if you have more questions or just want to
"talk". I was diagnosed several years ago and probably also have chronic
fatigue syndrome, but it hasn't been diagnosed. (Doc says there isn't much
point.)
Tia

No one can make you feel inferior without your consent.
Eleanor Roosevelt
*********************************************
Tia Leschke
leschke@...
On Vancouver Island

Tia Leschke

>I don't imagine most children would be too excited about this, but I want to
>recommend acupuncture. It's actually so non-invasive. Since it mainly deals
>with correcting and freeing energy flow in the body, it seems like a very
>appropriate treatment for a problem with symptoms like those of
>fibrolmyalgia. imo.

Like every other treatment for fibro, acupuncture helps some, doesn't help
some, and actually hurts some. It may well be worth a try. If she's
bothered by the needles, maybe accupressure or some other energy treatment
might help.
Tia

No one can make you feel inferior without your consent.
Eleanor Roosevelt
*********************************************
Tia Leschke
leschke@...
On Vancouver Island

Amy

I don't imagine most children would be too excited about this, but I want to
recommend acupuncture. It's actually so non-invasive. Since it mainly deals
with correcting and freeing energy flow in the body, it seems like a very
appropriate treatment for a problem with symptoms like those of
fibrolmyalgia. imo.
Amy
-----Original Message-----
From: Lisa Breger [mailto:lisa@...]
Sent: Thursday, June 06, 2002 6:48 PM
To: [email protected]
Subject: Re: [AlwaysLearning] Fibrolmyalgia


<<I don't know a whole lot about this disease...I have heard, however,
that it
can be a catch-all for diseases that the docs just can't diagnose>>

I have to wonder the same thing, and I ask every doc we see if there is
anything else we can test for. I also ask to re-test for certain illnesses,
like Lyme disease, that have been known to report false negative. But, from
what I have read so far, it seems there is a ton of research, here and
abroad, indicating many abnormalities found only in fibromyalgia and chronic
fatigue sufferers. These would include low blood flow to certain areas of
the brain, disrupted growth hormone secretion, raised levels of substance P,
deficiencies in serotonin, and much more. (See how much I learned
unschooling myself!)

We are also seeing a naturopathic doctor, who is treating Tiffany with a
homeopathic remedy. I'm grateful to have that option available to us.

Thanks for the support!

Lisa




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[Non-text portions of this message have been removed]

[email protected]

<<I don't know a whole lot about this disease...I have heard, however,
that it
can be a catch-all for diseases that the docs just can't diagnose.>>

One of those diseases is gout. Because gout causes pain in joints all
over the body it often is diagnosed as fibromylagia. I thought it was
what I had until I had kidney stones and hence discovered my high uric
acid count. I must have missed the symptoms described in this person's
case but they might want to consider having this checked.

Kris

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Lisa Breger

<<I did wonder, though, since you said it started after a virus and that she
had been completely bedridden for so long. That sounds more like chronic
fatigue syndrome, but they're so closely related that many think they're
the same. One difference is that people with CSF are often
exercise-intolerant, whereas many people with fibro are helped by very
small amounts of gradually increasing exercise.>>

She did have at least 14 of the tender points. I suspect she may also have CFS. It was the enterovirus that precipitated the fibro, and researchers in England, I think, believe that particular virus causes CFS.

I'll have to get that book; It seems a lot of people recommend it.

Thanks!

Lisa





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