I have been suffering from Reflex Sympathetic Dystrophy
(RSD/CRPS) for 4 years now. It’s funny how one thing can change
your life so drastically. I had moved to NY after college to work in
advertising. I had worked my way up from an entry-level position,
and was then working as an account executive at a large
advertising agency. I was taking a coffee break one day, and that is
where my life changed. A fire extinguisher fell on my right foot,
breaking it instantly. I was rushed to the hospital given crutches, a
soft cast, and orders to stay off my feet.
As time progressed my foot just seemed to be getting worse. My
right foot (which is where the injury occurred) began to swell and
turn into this awful purplish color. The pain was not like anything I
had ever felt before, and I just knew that something was terribly
wrong. I had seen several doctors before I was finally diagnosed
with RSD/CRPS.
I had no idea what that meant and how it would impact the rest of
my life. RSD is one the most painful conditions out there.
According the McGill pain index RSD in ranked above cancer and
amputation. It can appear in anyone in any extremity after any kind
of trauma from a break, surgery, a spider bite, or even a paper cut.
The trauma sends your sympathetic nervous system into overdrive,
which sends messages to your brain that you are in excruciating
pain. The scary thing is that it could happen to anyone, it can
spread throughout your body, and there is no cure.
The best way to describe the pain is to imagine what it would feel
like to have someone hold a blow torch to both your legs at all
times. Since the onset of my RSD, it has spread up my right leg
and all the way up my left leg. This makes life so difficult. The RSD
is so sensitive that I cannot even allow a blanket to touch my foot
because the pain is unbearable. Rain to an RSD sufferer feels like
nails being driven into the effected area. Everyday activities are
now a huge challenge to me. Standing and walking cause such
pain, that from the moment I stand up the color of my legs turn
purple within seconds. It has gotten so bad that sitting down at a
table to eat is too difficult. My mom brings me dinner in bed so that I
can keep my legs elevated; this is the only position that provides
any relief.
I have been treating my RSD with medication (including fentanyl
patches and a swarm of other drugs that are supposed to treat the
pain), I have had approx. 25 nerve blocks, and I tried the 10-day
outpatient ketamine treatment. Now my only hope is to go to
Germany for a 5-day ketamine infusion where I will be in an
induced coma and hooked up to a respirator. This is very
dangerous, but it has become my only option.
Update- Elizabeth’s story (8/04/08)
I would like to start by thanking all of you for visiting our site, reading
my story, and watching my day-in-the-life video. I have been so
overwhelmed by your generosity, kindness, and warm wishes.
Each and every day is a struggle, and staying motivated and
positive can be a challenge. Knowing that there are so many
people supporting me and encouraging me, I know that anything is
possible.
In February 2008, I was admitted to Hahnemann Hospital in
Philadelphia for the 5-day inpatient ketamine treatment. For five
days they keep you secluded in the ICU with little to no stimulation.
The hospital staff keeps the lights turned off and encourages
patients to rest as much as possible. During the 5-day stretch I
was given higher doses of ketamine with the hopes that it would
help “reboot” my sympathetic nervous system. While in the hospital
I began to see improvements almost immediately. The swelling,
color change, and pain all seemed to improve. Following the
hospital stay I was scheduled for a series of booster infusions over
the next several months. My doctor had warned me that the pain
could return, and just as he predicted little by little the pain, the
color changes, and swelling all came back. I felt like my time in the
hospital was a fairy tale and that was now just a distant memory.
Throughout the past couple of months, my RSD has continued to
spread rapidly. Since the onset (August 2003), my RSD has spread
from just my right foot, to my legs, my arms, my neck, and my chest.
I have been on a waiting list to go to Saarbruken, Germany to try the
ketamine coma treatment, reserved for the most severe cases. In
Germany doctors are allowed to administer 10 times the amount of
ketamine that is allowed in the US. Doctors will medically induce a
coma while I will be infused intravenously and continuously while
supported by a ventilator for days. Since my body responded well to
the ketamine, we are hopeful that the higher doses will knock my
RSD into remission; or in the least reduce my pain (since currently
there is no known cure).
I wanted to thank you all for taking the time to read my story, and in
turn, learn about RSD. It is such a devastating diagnosis because
so few people know what it is and how to treat it. Many RSD
sufferers go years without being diagnosed properly. Because we
look relatively healthy nobody would ever know the kind of pain we
endure daily. It is relentless and never-ending. It is my goal to help
raise awareness for this disease and my hope that we will be able
to devote more time and resources to research, finding a cure, and
making these treatments available to everyone in the country.
(RSD/CRPS) for 4 years now. It’s funny how one thing can change
your life so drastically. I had moved to NY after college to work in
advertising. I had worked my way up from an entry-level position,
and was then working as an account executive at a large
advertising agency. I was taking a coffee break one day, and that is
where my life changed. A fire extinguisher fell on my right foot,
breaking it instantly. I was rushed to the hospital given crutches, a
soft cast, and orders to stay off my feet.
As time progressed my foot just seemed to be getting worse. My
right foot (which is where the injury occurred) began to swell and
turn into this awful purplish color. The pain was not like anything I
had ever felt before, and I just knew that something was terribly
wrong. I had seen several doctors before I was finally diagnosed
with RSD/CRPS.
I had no idea what that meant and how it would impact the rest of
my life. RSD is one the most painful conditions out there.
According the McGill pain index RSD in ranked above cancer and
amputation. It can appear in anyone in any extremity after any kind
of trauma from a break, surgery, a spider bite, or even a paper cut.
The trauma sends your sympathetic nervous system into overdrive,
which sends messages to your brain that you are in excruciating
pain. The scary thing is that it could happen to anyone, it can
spread throughout your body, and there is no cure.
The best way to describe the pain is to imagine what it would feel
like to have someone hold a blow torch to both your legs at all
times. Since the onset of my RSD, it has spread up my right leg
and all the way up my left leg. This makes life so difficult. The RSD
is so sensitive that I cannot even allow a blanket to touch my foot
because the pain is unbearable. Rain to an RSD sufferer feels like
nails being driven into the effected area. Everyday activities are
now a huge challenge to me. Standing and walking cause such
pain, that from the moment I stand up the color of my legs turn
purple within seconds. It has gotten so bad that sitting down at a
table to eat is too difficult. My mom brings me dinner in bed so that I
can keep my legs elevated; this is the only position that provides
any relief.
I have been treating my RSD with medication (including fentanyl
patches and a swarm of other drugs that are supposed to treat the
pain), I have had approx. 25 nerve blocks, and I tried the 10-day
outpatient ketamine treatment. Now my only hope is to go to
Germany for a 5-day ketamine infusion where I will be in an
induced coma and hooked up to a respirator. This is very
dangerous, but it has become my only option.
Update- Elizabeth’s story (8/04/08)
I would like to start by thanking all of you for visiting our site, reading
my story, and watching my day-in-the-life video. I have been so
overwhelmed by your generosity, kindness, and warm wishes.
Each and every day is a struggle, and staying motivated and
positive can be a challenge. Knowing that there are so many
people supporting me and encouraging me, I know that anything is
possible.
In February 2008, I was admitted to Hahnemann Hospital in
Philadelphia for the 5-day inpatient ketamine treatment. For five
days they keep you secluded in the ICU with little to no stimulation.
The hospital staff keeps the lights turned off and encourages
patients to rest as much as possible. During the 5-day stretch I
was given higher doses of ketamine with the hopes that it would
help “reboot” my sympathetic nervous system. While in the hospital
I began to see improvements almost immediately. The swelling,
color change, and pain all seemed to improve. Following the
hospital stay I was scheduled for a series of booster infusions over
the next several months. My doctor had warned me that the pain
could return, and just as he predicted little by little the pain, the
color changes, and swelling all came back. I felt like my time in the
hospital was a fairy tale and that was now just a distant memory.
Throughout the past couple of months, my RSD has continued to
spread rapidly. Since the onset (August 2003), my RSD has spread
from just my right foot, to my legs, my arms, my neck, and my chest.
I have been on a waiting list to go to Saarbruken, Germany to try the
ketamine coma treatment, reserved for the most severe cases. In
Germany doctors are allowed to administer 10 times the amount of
ketamine that is allowed in the US. Doctors will medically induce a
coma while I will be infused intravenously and continuously while
supported by a ventilator for days. Since my body responded well to
the ketamine, we are hopeful that the higher doses will knock my
RSD into remission; or in the least reduce my pain (since currently
there is no known cure).
I wanted to thank you all for taking the time to read my story, and in
turn, learn about RSD. It is such a devastating diagnosis because
so few people know what it is and how to treat it. Many RSD
sufferers go years without being diagnosed properly. Because we
look relatively healthy nobody would ever know the kind of pain we
endure daily. It is relentless and never-ending. It is my goal to help
raise awareness for this disease and my hope that we will be able
to devote more time and resources to research, finding a cure, and
making these treatments available to everyone in the country.
Elizabeth's Story
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| Elizabeth's Feet and Legs |
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| RSD |
Photo from Hahnemann
Hospital, February 2008
Hospital, February 2008
Elizabeth's Story, Part 1
Elizabeth's Story, Part 2
Elizabeth's Story, Part 2