Input please, support

Take a look at Miryam Williamson's fibromyalgia page.
http://www.mwilliamson.com

She also includes a page full of links to other fibro information
http://www.mwilliamson.com/links.htm

While following your doctor's directions keep in mind that a high
fiber low-carb regimen along with daily aerobic exercise will probably
be helpful in the long run despite the pain exercise causes. Find a
way to keep moving (pun intended) so you avoid the Wizard of Oz tin

man effect that comes from inactivity. Hang in there and be sure to
systematically killfile the fools who would try and bring you down.
Lee Rodgers
Lowcarb Retreat http://www.lowcarb.org
CHAT http://www.lowcarb.org/parachat.html
Low-Carb Connoisseur http://www.low-carb.com




Thank you for the links Lee. I understand the Wizard of Oz, Tin man that didn't
get oiled. I experienced that last year, before beginning low carbing, and a
exercise routine.

On Sat, 28 Aug 2004 21:03:03 GMT, "PlacidBull"
wrote:

I have chondrosarcoma. I have had my pelvis, hip, and leg removed. I have
experienced pain on a level of 9.5 out of ten over a two year period.

Very sorry to hear that. What's your prognosis?

I am not impervious to the pains of others.

The one lesson I learned was "do not
ask how do I get rid of the pain?" ask instead "what is causing the pain?"

It's funny that you should mention the value of making an EFFORT to
get to the sources of pain and health problems BY ASKING QUESTIONS
because that was exactly what Sunshyne was attempting to do in this
thread.

Now if she had done a 'poor me', I might have a different
interpretation...

I have also met those who complain incessently, go from one doctor to another,
from one emergency room to another, pop one pain medication after another

Sure, there are more than a handful of hypochondriacs in the world,
since you brought it up earlier. And I would imagine a few of those
'supposedly' have fibro. I'm sure many others are mistakenly
diagnosed with fibro when they may have something non-auto immune
related going on; it does seem to be a rather trendy diagnosis of
late. But why would you assume that Sunshyne fits into that category
right off the bat in your post?

and label it fibromyalgia.

If you have a pain, do not label it fibromyalgia.

In case you missed where Lee and Saffire explained it to you,
unfortunately a lot is still not known about auto immune disorders and
the root causes.

People used to know little about cancer. Would that have made your
chondrosarcoma any less real if you had been born a few centuries ago?

Find out WHAT it is and then pursue its correction.

Again, little is still known about auto immune disorders. Hopefully,
that will change as more research is done.

And sunshyne also said:
"I would like the others with the same illness as me, to step up to
the plate on this one."

Okie doke.

I had juvenile rheumatoid arthritis in my knees from the ages of 2 to
5 and was crippled to the point that I had to wear leg braces to walk.
This all happened about thirty years ago. Fortunately, I just had JRA
for three years; it could have been a lot longer.

I can still vividly remember the intense pain from going to the
physical therapist to this day. I also exhibited some of the symptoms
relating to a systemic classification of JRA -- fevers, severe hives,
skin rashes, swollen glands. In addition, I was one of the large
percentage that never test positive for antibodies.

Even though I completely recovered from the manifestation of arthritis
in the knees, I continued to have the frequent spontaneous skin
rashes/hives, swollen lymph, and unexplained fevers associated with
systemic classification. Frequency gradually lessened over time and
had mostly ceased by the time I was 10.

That's when the symptoms of (whatever? at this point) morphed. The
fevers and rashes went away, but then I started experiencing extremely
stiff (but not painful) muscles upon rising. The stiffness was always
completely gone by the time I took a shower and got dressed and in no
way prevented me from being quite athletic in middle and high school.

Over time, the frequency of those symptoms lessened quite a bit, just
as the fevers and hives had before.

However, I developed quite painful symptoms of fibro in my late
twenties and was diagnosed as such by a rheumatologist. Part of her
determination in this was my previous medical history and family
history -- some lupus and also adult onset RA in the bloodline.
Believe me, I certainly wasn't looking for some vague syndrome as
diagnosis. I would have much rather been told that I had X and could
do or take Y for it, just like that.

As a side note, I was also exhibiting symptoms of hypoglycemia in that
time frame and needed to lose about 30 or more pounds. That certainly
didn't help with the fibro.

Fortunately, I've been able to eliminate the vast majority of fibro
symptomology through LC, regular weight training, and cardio. Didn't
happen overnight, but it happened. Also, maintaining a slender weight
(low/med low side of optimal for frame per Met Life chart) seems to
help considerably. Wheat and grains are a major trigger for me, so I
avoid them.

Do I really know exactly what the root cause is of this syndrome that
I had/have? Unfortunately, no. So I took steps to do what I can do
to help make it better.

I have been diagnosted by a rheumatologist as having fibromyalgia. I don't
think
my case is as strong as Sunshyne's, but I don't doubt it as a diagnosis. I
was
ALREADY treating OTHER things with the same recommendations the
rheumatologist
gave me for the fibromyalgia, so the diagnosis didn't have much of an impact
on
me other than to frustrate me as to it's vagueness.

Yes, Saffire, it is a vague syndrome. It is fully not understood. It has no
specific cause. It has no specific "fix"

Sunshyne was also
recently
in a car accident (and had one a few years ago, as I recall), and has some
very
REAL injuries to deal with, an being overweight only makes things worse.


I was in a car accident 10 years ago. Which shattered the bone in my right arm.
Took a couple surgeries to get the use of the arm back. I think that was the
start of the health problems. One of the main causes. I have also been in 2 car
accidents of late. 2 years ago, then another one this year. Both rear end
accidents, me being the one rear ended.

It never ceases to amaze me how people who are NOT afflicted with multiple
medical problems so blythely dismiss those who are. I had an (older) allergy

doctor once say he thought it was all in my head because I had too many
physical
problems for someone my age.


At the ER last night. The doctors treated me with such respect. I tryed my best
to give the them the list of the health problems I am experiencing. And past
medical history. They looked at me with awe. They said they have never met a
woman like me, with such strength and courage. While in the another cubicle, a
guy was there to try and get pain meds for his addiction. Interesting day and
night to say the least.

I pointed out that I had a) fallen down some
stairs, which led to chronic back problems, exacerbated, no doubt, by the
fact
that my right leg is 3/4" shorter than the left one and the right foot is two

FULL sizes smaller than the left one AND only has 4 toes on it, b) had wrist
injuries that required SURGERY, and c) took several medications (including
some
prescribed by HIM) that not only gave me severe dry mouth, but also dried out
my
sinuses, leading to frequent sinus infections, which was why I was there to
see
him that day. How can fever and pus be considered due to hypOchondria? That

shut HIM up and he DID prescribe an antibiotic. Sheesh! HE was the one who
told
ME that I was "super allergic" based on the tests HE administered, and said
that
I should never have a pet of any kind with fur or feathers because even if I
WASN'T allergic to it at the time, I would BECOME allergic to it within 6
months.
Of all the trees and grasses he tested me for, I was more than a little
allergic
to all but two of them. He couldn't believe I had waited so long to be
tested
for allergies.


Gosh Saffire. You had a nasty doctor there. I had one in the beginning also. It
took so many tests to get the diagnosis. Then what sort of diagnosis is FMS? I
had no inner strength and courage like I do now. I learned lessons from him
though. What not to tolerate. What to look for in a doctor.

Some people have autoimmune problems and some people don't. I happen to be
one
who DOES. I AM more sensitive in some areas than others because of that. I
can
often sense low-level earthquakes when others cannot -- I can sense when a
floor
in a room is not level when others do not. Low-grade fevers REALLY knock me
for
a loop, causing EXTREME fatigue. I had a lupus antibody detected back in
1991
during a ANA panel when an immunologist at Stanford was trying to rule out
autoimmune problems regarding the acute pain in my wrist. Why did I
eventually
go to a rheumatologist? It wasn't MY idea -- another doctor referred me
based on
my sensitivities, just to rule some things out. I was very surprised when
the
rheumatologist told me she thought I had fibromyalgia based on (I think) 11
out
of 18 specific symptoms. I've had one doctor think a specific pain was no
big
deal and another doctor say they couldn't BELIEVE I had waited so long to see

someone about the very same pain.

I had the first symptoms really 10 years ago. Just aches and pains. Sleeping
problems, allergies. I came down with a flu in 1999, havn't been the same
since. About the same time, a trauma occured. Our home burnt down the ground,
we lost everything.

I long ago realized that most doctors are
incredibly bored with what they perceive as average, unremarkable problems,
especially if the cause isn't obvious, and they really only perk up when
someone
comes in with something dramatic and obvious, like an arrow through the
forehead.


LOL, Saffire. Made me laugh on that. I remember too, when first coming onto
the board. Back in Janruary. I beleive my first post was titled... Fibromaylgia
and Low Carb. You were very supportive to me, and you still are. I apprecitate
that very much.


Pain from chronic joint inflammation is VERY real. Bleeding from the rectum
is
CERTAINLY VERY real. People have different levels of tolerance for pain and
illness for a myriad of reasons, and that's a fact.

That is exactly what I came in here and posted for this morning. I have been
handling it all OK. Doing the best I know how to. It all has piled on me all at
once. It got to me. So, I asked for input and support. Then I get **** like I
am a hypochondriac.

You know what I wish on
my
one TRUE enemy, the only person in the world that I really, truly HATE?
Death?
No. Acid in the face? No. Stab or gunshot wounds? No. Terminal illness?
No.
What I wish on her is every chronic physical problem *I* have ... and just a
*little* bit more.

--


Well said. Thank you Saffire.
Saffire
205/149/125 - 5'1.5"
Atkins since 6/14/03
Progress photo: http://photos.yahoo.com/saffire333

The AMA says that low carb is bad for you, so it's back to low fat and low
calorie, eh?

Are you following the government's food pyramid?

Do you always use an asinine appeal to authority when arguing the wrong side
of an issue?

--
Most people are dumb as bricks; some people are dumber than that. -- MFW


"ConnieG999" wrote in message
...
"JC Der Koenig" writes:

Fibromayglia = hypochondria.

Well, I guess the American College of Rheumatology would be interested in
your
"diagnosis".
Fibromyalgia is a diagnosable illness and fully recognized as such.
Except in the minds of people who *think* they know everything...

Connie
************************************************** ***
My mind is like a steel...um, whatchamacallit.

I have chondrosarcoma. I have had my pelvis, hip, and leg removed. I have
experienced pain on a level of 9.5 out of ten over a two year period. I am
not impervious to the pains of others. The one lesson I learned
was "do not
ask how do I get rid of the pain?" ask instead "what is causing the pain?"

With FMS, its totally different. Different way to deal with. What is causing
the pain? Havn't figured that out yet, and the docs havn't totally figured that
out yet either.

For me right now. Its living with the pain. Side by side with it. Daily.
Working along with it. Not becoming disabled from it. Trying to find answers.
Trying to figure it out.

I also try not to let it overtake "me".
Fibromyalgia is not what I am all about. It is just a aspect of me.

I
have also met those who complain incessently, go from one doctor to
another,
from one emergency room to another, pop one pain medication after another
and label it fibromyalgia. If you have a pain, do not label it fibromyalgia.

The sort of people you describe. That is not me. It has been quite awhile since
visiting a ER. I have two doctors I am working with right now. My family
doctor, and a neurosurgeon. Yet, yes, I have seen the types of people you
describe.

Find out WHAT it is and then pursue its correction. Just my opinion of
course.


I have been pursuing its correction.

Just my opionion.

Placid

Well I'm one of them Sunshyne. When I was diagnosed with fibromyalgia, I
had never heard of it. My doctor explained a lot to me and encouraged me to
learn as much as I could about it so we could work together. Because he was
concerned about the symptoms, he also sent me to a rheumatologist to be
examined and tested for that and other things. The rheumatologist confirmed
the fibromyalgia. If either of them thought I was a hypochondriac, the
whole matter would have been dropped and he certainly wouldn't have wasted
any more of his (or the rheumatologist's) time. Also, if my doctor thought
I was a hypochondriac he'd tell me! Both of them were very sympathetic and
helpful. My GP worked with me on finding the right meds to help with sleep
problems and pain. He explained what seemed to work with fibromyalgia and
why and we experimented to see what was most helpful for me. He also sent
me to a physical therapist and the rheumatologist later set it up for me to
have hydrotherapy at the local hospital. This taught me how to help deal
with the pain and stiffness by exercising. People who think fibromalgia =
hypochondria need to educate themselves. I'd say I wouldn't wish it on such
people, but that wouldn't be the truth.


Thank you very much Em, for sharing your story. I had not a great doctor for
some time. He did cause me to feel like I was a hypochondriac. So the words
from Placid Bull, it stung like a mother ****er. Thats OK though. When he
judges, he fails to realize, he has 4 fingers pointing right back at him.

What you sow, you reap.

Thanks Em, for the understanding and support.

I answered as many as I could. I will try to answer more tomorrow. I am not
well still. I need to get off here. Alone time.

I am no longer taking the Vioxx. I am increasing the water intake. I have the
sites shared, saved to my faves.

Thanks guys and gals, for giving me Hope.

When you bring this up with your doctor, don't mention Atkins...just tell
him/her you've removed/reduced starchy foods, sugar & flour products, and
junk good.

Thanks Roger.
Will do.

Sunshyne, relax.

Things happen to us all as we age. Has little or nothing to do with our
diets, it's just part of life.

Accepting and understanding the changes is important. You'll be fine.

I also started a new med. Just took it one day. Vioxx. Maybe it ulcered my
stomach.

Bingo!!! Vioxx is hell on the stomach - I recently had a bad stomach bout on a
similar drug, Mobic. Stop the Vioxx and see how you feel in the next few days.

Sunshyne wrote:
| I have had some medical problems come up. And its causing me to
| question the Atkins diet now. I will try to make it short and to the
| point. I hope to get some input from those in the medical field.

How do you know that the problems would not have been much worse if you had
not been on the Atkins program? My guess is that your low-carb eating kept
you much healthier than you would have been otherwise and minimized your
sumptoms.

This would make more sense than your negative take, since for most of us the
type of symptoms that you describe have all improved over time on Atkins.
--
Peter
270/215/180
Before/Current Pix:
http://users.thelink.net/marengo/wei...htlosspix.html