On Sat, 28 Aug 2004 21:03:03 GMT, "PlacidBull" <[email hidden]>
Quoted message said: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?
Quoted message said: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...
Quoted message said: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?
Quoted message said: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?
Quoted message said: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.