My Dear Friend Kate,
This is for all you have done for the RSDS Gang and for how much you
make
this world a better place to live in, simply because you give of yourself
to
those in need.
Solace,
Sue Wolf Pugh
RSDS Dysfunctional GANG
This is the speech that I wrote on RSD, and I will be presenting it
on
Tuesday, September 19th! To those of you who helped me, I thank you
very very
much from the bottom of my heart!
Love Always, Kate
Imagine that someone poured gasoline on your foot, lit a match, and
set your
foot on fire. Imagine the fear, the agony, and the intense pain you
would
feel as your foot was burning up. Your first reaction would probably
be to
put the fire out. But what if you couldn't? What if the initial flames
ceased, but the burning sensation never stopped? Can you imagine living
a
life where your foot ALWAYS felt as though it were on fire? Its pretty
hard
to imagine, isn't it. Well, people do live this life, a life full of
agonizing pain. These people have a rare neurological disease called
Reflex
Sympathetic Dystrophy, or RSD. You've probably never heard of
it, and until
2 years ago, I was ignorant about this disease as well. But now, I
feel as
though I know a little too much about it. That's because I am one of
the
approximated 7 million people that suffer from this disease. I feel
that one
of the first steps in fighting this disease is to raise awareness about
it.
There could be millions of other sufferers out there. You or someone
you know
could be one of them, and not even know it. So I am standing here today
to
tell you what RSD is, what the symptoms and stages are, and the various
methods and costs of treatment.
RSD is a mysterious disease that affects the sympathetic nerve system.
I must
stress that there is no actual known cause for RSD. It is usually triggered
by an injury, whether it be something minor like a bruise, a stubbed
toe, a
sprained ankle, a bone fracture…or something major
like a stab or gunshot
wound, burn, or surgery. Normally, when an injury occurs, an impulse
is sent
through the sympathetic nerves from the injury site to the spinal cord.
The
spinal cord then sends the impulse back to the injured site. However,
when
RSD is present, the sympathetic nerves send an abnormally high level
of
impulses back to the injured site. These impulses cause the blood vessels
to
constrict and alter the blood flow to the affected area. One doctor
informed
me that RSD is your body's way of trying to amputate the injured area,
which
for me was my left foot. This impulse process results in EXTREME
pain. This
pain is just one of the many symptoms that leads to a diagnosis of
RSD.
The presence of RSD is determined by ruling out other problems, and
by
evaluating the symptoms. The first and primary complaint is, of course,
the
pain. This pain can be described as a horrible, constant burning that
comes
from deep inside. This pain is far greater than what would be expected
for
the injury sustained, which makes some patients feel as though they
are just
crazy. There are many other symptoms which occur in three general stages.
In the first stage, the onset of the burning pain occurs, and it is
basically
limited to the site of the injury. Also in the first stage Hyperasthesia
occurs. Hyperasthesia is an over-sensitivity to touch and light pressure.
Wearing a sock caused horrendous pain for me, and if someone so much
as
lightly brushed against the skin on my foot, I could not help but cry
out in
pain. My foot started sweating so much that I was going through at
least 5
pairs of socks a day. This increased sweating is known as Hyperhidrosis.
To
me, the worst part of this stage was the fact that my foot froze in
a
downward position, and no matter how hard I tried, I could not move
it. The
skin on the RSD affected area undergoes many changes during the first
stage.
It can go from warm, red and dry, to cold and sweaty. This stage
I just
described has an average duration of 1-3 months.
In the second stage of RSD, the pain becomes more severe and may begin
to
spread to the surrounding areas. Hair growth can either increase or
decrease,
and the nails become brittle. The unused muscles begin to waste and
gradually
become unusable. Also, osteoporosis may begin during stage 2. This
stage may
last anywhere from 3-6 months.
In the third stage of RSD, the damage to the muscles becomes irreversible.
The pain may now involve the entire limb. Some people may eventually
get RSD
in the entire body, which is known as systemic RSD. Many who reach
this stage
of RSD may see treatment as futile. However, the chance of recovery
greatly
increases if RSD is treated quickly.
There are quite a few treatments available for those of us who suffer
from
RSD, all of which are quite costly. These treatments are experimental
because
there is no cure for this disease, and all of them are potentially
dangerous.. Due to a lack of time, I'm only going to tell you about
the most
commonly used treatments. Various pain medications, steroids, nerve
pills,
and antidepressants are typically the first treatments prescribed.
One common
medication is Neurontin, which is an anti-seizure drug, that does help
some
patients. However, it did not help me at all. Other common forms of
treatments are nerve blocks, which are used to deliver medications
directly
to the vicinity of the nerves responsible for the pain. I had a total
of 7
nerve blocks, each one costing about $1500. The first 2 I had are called
Epidural nerve blocks, in which different medications are injected
into the
spinal sac through the usage of a VERY large needle. It goes through
the
space where the spinal nerves pass as they travel from the spinal cord
to the
rest of the body. These epidural blocks can cause your legs to be temporary
paralyzed, and a sore back for 2-3 days can be expected. The epidural
blocks
proved useless in my treatment. However, I then had 5 lumbar sympathetic
blocks, which significantly helped me. In these blocks, the medications
were
injected directly into the sympathetic nerve chain to the left of my
spinal
column.
Another form of treatment is physical therapy. I underwent 6 months
of
rigorous physical therapy, in which I re-learned the art of walking,
and
worked to regain the strength I had lost. The total cost of my physical
therapy was over $7,000. While this intense physical therapy worked
for me, I
must stress that it is NOT for everybody. For some people with RSD,
exercise
is far too strenuous and can often times worsen the pain.
There are other forms of treatment that I don't know as much about because
I
myself was never treated using them. Some patients have spinal cord
stimulators implanted under the skin, which send out electrical signals
in an
attempt to block the pain signals. These implants cost about $30,000.
Another
costly form of treatment is a morphine pump, which drips morphine directly
into the spinal fluid, and costs about $20,000.
As you can see, RSD is a very costly disease, and not just because of
the
money involved. It causes physical and emotional pain for not only
the
patient, but for the patient's friends and family as well. I hope that
you
have gleaned some information about RSD from my speech today, because
my main
goal is to raise awareness in an attempt to fight this disease. If
any of the
symptoms I described sound familiar to you, do not just brush it off
as
nothing. Like I said earlier, if RSD is treated right away, there is
a
greater chance of preventing the spread of this disease. So if you,
or
someone you know may be suffering from RSD, please feel free to talk
to me
about it. Because together, we may be able to put the fire out. Thank
you.
