Darlaa's Story
Darlaa a member of MDJunction and the RSD Support Group has written several
essays regarding her journey with RSD. Some of the following are repetitive only
because they are separate writings. I'm proud to display Darlaa's time and effort here. I
hope you are inspired also.
Darlaa's speech she gave last semester on rsd:
Imagine having the worst pain of your life day after day with no end. Doctors cannot help you, and pain
medicine only slightly dulls the nightmare away. Some doctors have even told you that there's nothing wrong
with you. Welcome to the world of an RSD patient who is out of remission. RSD stands for Reflex
Sympathetic Dystrophy and is a nerve condition with which the nerves give off a pain signal a long time after
a minor injury has occurred. Today I am going to go over the symptoms of RSD and discuss some possible
treatments.
RSD, also known as Complex Regional Pain Syndrome, has many symptoms, but not every RSD patient
experiences exactly the same types or amounts of ailments. An initial injury, pain, swelling, and physical
differences are the main problems associated with this debilitating condition. Injuries that could cause RSD
range from a paper cut or sprained ankle to a broken bone. Pain due to RSD is much worse than that of the
original injury. The pain associated with RSD takes many forms including: a ceaseless burning pain,
hypersensitivity, loss of feeling, spasms of blood vessels and muscles, crushing, or stabbing pain. RSD, or
CRPS, is one of the most painful conditions and is ranked above labor pain, according to a pain scale, located
in one of the only books written on RSD,Positive Options for Reflex Sympathetic Dystrophy (RSD): Self
Help and Treatment. Swelling of the affected area usually also occurs, which in turn causes a stiffness of
joints. The last major symptom of RSD, which may be a major factor in making a diagnosis, is a difference in
temperature, usually colder, and color, usually a purple or black hue, of the affected area as compared to the
rest of the body. Complex Regional Pain Syndrome is a permanent condition and several complications can
occur if not tended to early. Without proper and early treatment, the disease may progress in a worsening of
symptoms, or it could spread throughout the body involving an entire limb or the whole body. According to
Mr. Finniss, a member of the medicine faculty at the University of Sydney, Complex Regional Pain Syndrome
is a fairly new diagnosis, and there are very little amounts of information on this condition, thus creating a
difficult diagnosis.
Sadly, there are very few treatment options available due to the fact that little is known about the condition.
Several cases go undiagnosed for years or even a lifetime. However, those that are fortunate will have options
such as heat, medications, nerve blocks, physical therapy, and implants available to them. Early treatment
provides maximum efficiency, and treatment regimens are all basically the same if the condition is caught
early. Heat can tremendously assist a patient because the applications of it will bring down swelling as well as
soothe the pain. Also, avoiding anything cold will greatly prevent the condition from progressing. Bundling up
during the winter is advised. Many different types of medicines are used in the treatment of RSD including:
analgesics, antidepressants, anticonvulsants, muscle relaxants, NSAIDS, and NMDA receptor blockers. Each
medication attacks the symptoms in a different way. Usually paired with the treatment of pills is a nerve
block. This is a procedure in which an anesthetic is administered into the nerve, located in the spine, in order
to block pain. If multiple attempts at these treatments are unsuccessful, an experimental Ketamine treatment
will be administered, although some hospitals don't even offer this option. Ketamine falls under the category
of NMDA receptor blockers and is known as “special K” on the streets. According to Neurology Today, a
well-known health magazine, Ketamine acts on the nerve as a cast would on a “broken bone.” In my
experience as well as many other patients’ physical therapy is usually completed after a Ketamine treatment.
Special exercises used to lessen hypersensitivity and stiffness are done in a warm therapy pool. The water
reduces the stress and impact that land therapy would create. If all of these options fail, two different
implants may be surgically placed in the patient. One of them is a morphine pump, and it is placed in the
abdomen. It delivers a continuous amount of concentrated morphine into the nerve. The other type of implant
is a neurostimulator. According to the International Research Foundation for RSD/CRPS, a leading research
foundation run by three certified Mds and one PhD, “neurostimulation systems use low-intensity electrical
impulses to keep the pain signals from reaching the brain.” Sometimes, pain will still occur after all these
treatments have been performed, and this is why it is important for an early diagnosis and treatment.
There is no cure for RSD, but there are some treatments available to put this condition in remission. RSD has
many warning signs including an initial injury, pain, swelling, and physical differences, and these symptoms
may be treated with heat, medications, nerve blocks, physical therapy or implants. Always pay attention to
the warning signs that your body provides no matter what doctors may say because you never know what it
may be telling you!
Darlaa's proposal essay:
A Call for RSD Awareness
Pain is natural and it usually has a message; however, there is a population in the world that is told to ignore it
by uninformed doctors, bosses, and school officials, if they attend school. Most doctors today are not
educated on such enigmas as pain syndrome. The Complex Regional Pain Syndrome’s diagnosis is fairly new,
and little information is known about this condition (Finniss). An educational awareness program must be
started to ease the effects of this condition for patients.
Diagnoses are difficult to make due to the ignorance of doctor’s knowledge and the lack of wanting to learn
more. On average, one must see about 4.8 doctors before getting an accurate diagnosis, but there are those have
had to see seven physicians (Finniss). I know from personal experience that the patient must try their best to
survive through these trying times, which may last for years, before they receive an accurate diagnosis and
effective treatment. By this time several different things can occur such as progression, major stress, and a
loss of normality. No one should have to experience such strife just to survive and get by.
The doctors give inaccurate diagnoses or just simply say they do not have a clue as to what is wrong. Of
course they prescribe pain medicine, which does have a quick, momentary fix. After a few days, the powerful
tsunami of pain returns and the patient is left in the dark. The doctors of this world need to pay attention to
the signs and symptoms of debilitating, burning, and crushing pain with a loss of feeling, hypersensitivity,
swelling, stiffness in the joints, color change, and/or a temperature change which is usually colder than the rest
of the body (Harbut and Correll 147). If doctors could only do their jobs and become informed on such a life
destroying condition, patients wouldn’t have to experience such trials and tribulations.
For those patients who attend school, life is made much more difficult and stressful by a majority of the
staffs. Students are told they need to start attending school or else. School officials don’t realize that the
attendance policies are for those that are healthy and able to attend school daily despite the common cold that
may occur. A major condition such as CRPS has exceptions, and the staffs don’t realize this. I was actually
told to drop three of my classes by my teachers because they claimed that I would never pass them. Stress is
evident when such events take place. Students are forced to miss days due to major pain, doctor’s visits to get
an accurate diagnosis, or possibly to undergo specific regimens of treatment and procedures. Of course
makeup work becomes an all too common occurrence for these pain syndrome sufferers. Those staff members
that truly do try to understand are a few in a million. Stress builds from unfinished work, missed days, and
school systems trying to get one in trouble for missing school. Life becomes far too difficult just to get by,
and this isn’t right to do to anyone regardless of age.
The loved ones of these victims don’t quite understand either. Sometimes they may think the patient to be
faking or acting a bit. The family and friends of patients can only see that the victim physically appears
normal. Uninformed, average people do not understand the deep medical explanation behind such an enigma of
a condition. Usually when the patient needs the support of their friends and family most is when they get
frustrated and withdraw from sight. Friends and family need to understand and not get upset with the patient
if he or she can not meet previous commitments because this is normal for such a condition. It takes over the
body and barely allows the patient to think clearly if at all. There may actually be periods of time in which
the sufferer sleeps for twenty or more hours at a time. This is due to intense pain and stress as well as the
unavoidable side effects of medications which all cause exhaustion. Family members and friends should not
take this personally. Sometimes the family and friends make things dramatic and cause even more stress for
the patient when things aren’t the way of the past.
Stress is a contributing factor to the exacerbation of this condition. CRPS, also known as Reflex Sympathetic
Dystrophy, can be brought to magnified extremes if prompted by enough stress let alone other factors such as
not being diagnosed in a timely manner and progression. Stress can be caused by a number of factors, but the
most familiar to sufferers are finances due to the inability to work and medical bills. Support, financially or
emotionally, from others is definitely helpful to patients and can ease some of their pain. Knowing there are
people that are standing by strongly in support of the sufferer alleviates a bit of the stress thus reducing some
of the pain.
Those individuals around the patient also need to understand that they can’t just bump a patient in the injured
area and be able to walk away after a classic, “I’m sorry.” A simple bump can cause major chaos and pain in
one’s life. Caution must be demonstrated when one is near a Reflex Sympathetic Dystrophy, abbreviated
RSD, sufferer. If the condition was in remission, a simple bump can cause Complex Regional Pain Syndrome
to flare up again because this condition is basically an overreaction of the nerve that sends the pain signals. If
the condition was already in full swing, then it could become worsened if the affected and/or surrounding area
was to be bumped. This could have major damaging effects for a lifetime. Others need to be wary and
courteous of those that suffer from this debilitating condition. This can only be accomplished with educating
people about Complex Regional Pain Syndrome.
In order to better facilitate a better understanding of RSD, I propose that an association dedicated to RSD
education and awareness be started. My proposal also involves this education and awareness outreach
educating doctors so they can better recognize such a condition. This is the best solution because it will reach
as many people as possible and inform them of the issue that has been in existence for some time although a
majority possesses no knowledge of it. Such an organization is better than letting individuals suffer silently as
they do now because a true understanding can be acquired.
Others can try their best to identify with the victim and help them out physically, emotionally, or financially.
The association should also take donations to assist patients in paying their medical bills because this will
help eliminate part of the stress that arises. The information that will be distributed and discussed in seminars
around the nation will also assist in the elimination of stress because authorities causing this stress will be
informed of this terrible condition and how their cause of stress worsens the condition. The best solution is
informing people because we cannot allow this to go on any longer. The way we are leaving patients to fend
for themselves is inhumane, especially when they are unable to fight back. We must inform the nation and
begin by establishing a website. Then we need to talk to doctors who do understand this condition and ask
them to assist in writing informational pamphlets that can be distributed and posted on our RSD/CRPS
awareness website. Next, we should also start taking collections for the association to function with as well as
donations for the patients’ needs. Collections could also be used to generate research funding to discover more
about RSD. By doing all this, we can make this world a more peaceful place for sufferers and help ease their
pain and stress.
The benefits outweigh the costs because it will help relieve colossal amounts of stress and pain which
correlate with one another. An understanding of this condition for non-sufferers will be more evident. Put
yourself in the shoes of sufferers and try to picture enduring pain exceeding that of a broken bone or kidney
stone but on a continuous basis.
Something must be done right away because the current status is inhumane. We are to help those in
destitution, and patients with RSD are very much in need. Research and awareness must be done because this
condition destroys lives. People capable of great things are being held back, and it may become too late for
them to regain what they once had let alone what they could accomplish.
It will also greatly assist families and friends of patients in understanding such a complex condition. School
staffs of victims can also be made aware of the debilitating effects of this condition, and hopefully they will
become more sympathetic to those sufferers of RSD. Through this awareness program, educational literature
will be distributed to those needing a better comprehension of Complex Regional Pain Syndrome. Volunteers
will be needed to make a web page and to help distribute literature with explanations of the condition.
Donations would also be necessary to help make all of this possible.
If this awareness program is not started, more patients will experience the worst distress of their lives. This
may continue on forever with no escape. We must help those patients in need to get the treatment they
deserve from doctors, schools, families, and friends!
Works Cited
Finniss, Damien, et al. “Complex Regional Pain Syndrome in children and adolescents.” European Journal of
Pain. Nov. 2006. Volume 10. Issue 8. Pages 767-770. Article search. All databases. Thomas Cooper Library,
University of South Carolina. 28 Oct.2007 <http://www.sciencedirect.com>.
Harbut, Ronald and Correll, Graeme. “Successful Treatment of a Nine-Year Case of Complex Regional Pain
Syndrome Type-1 (Reflex Sympathetic Dystrophy) with Intravenous Ketamine-Infusion Therapy in a
Warfarin-Anticoagulated Adult Female Patient.” Pain Medicine 2002. Vol.3, No.2. Academic Search Elite.
EBSCO. Thomas Cooper Library, University of South Carolina. 28 Oct. 2007. <http://web.ebscohost.com>.
A casual essay Darlaa wrote a few years back
Imagine that you are experiencing the worst pain of your life, say comparable to having a broken bone, on a
daily basis. It has been ongoing since an injury occurred while playing softball about two years ago. I gets to
the point where you can’t eat, can’t run, and can’t sleep. You’re missing out on an increasingly alarming
amount of activities. Your one mile of running per day has ceased. This is a normal occurrence in the life of
those who have been diagnosed late or not at all with Reflex Sympathetic Dystrophy, a debilitating form of
pain syndrome.
Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome, is a nerve condition with
which the nerves give off a pain signal even though the original injury occurred long ago, possibly four years
or more ago. Some of the signs and symptoms include: ceaseless “burning pain,” loss of feeling,
hypersensitivity, swelling, stiffness in the joints, difference in temperature from the rest of the body (usually
colder), and/or color change in the affected area (Finnis; Turner-Stokes 939; Harburt and Correll 147). Extreme
fatigue also occurs due to the intense pain. Reflex Sympathetic Dystrophy, RSD, can be a permanent
condition and several complications can arise if not attended to and diagnosed properly. These possible
complications which may result from a lack of or a late diagnosis from a doctor are a progression of the
condition, a loss of normal activity, and possibly a loss of normality forever.
It is estimated that adult patients had to see about 4.8 separate doctors before they were sent to a pain clinic
to be diagnosed although there are the cases of RSD in which patients get injured and are almost immediately
diagnosed and treated for the condition (Finnis). Some individuals go nine years without a diagnosis, and
others never will get a proper diagnosis. I, personally, went to seven doctors, and two and a half years after
my softball injury. I was then referred to a pain clinic where I was diagnosed on the spot. By the time they
began the rigorous treatment on this condition, it had progressed tremendously. This is partly attributed to
my athletic trainer’s advice to put ice on my whole leg in order to control the swelling and pain, not to
mention my family doctor telling me that my injury was a bruise for a year. Ice and cold actually progress this
condition more, and intensify its effects. Climate plays a big rule in the easing or worsening of this condition.
There are many more cases of Complex Regional Pain Syndrome in the north as compared to the south. The
icy cold of the north exacerbates and progresses this disease. Doctors, however, don’t mention that weather
can make a difference in the maintaining of this condition until asked. Progression can be characterized by
worsening of the pain and other symptoms, an experience of more symptoms, and/or a spreading of the
condition from one limb or area of the body to another. Whatever the case may be, progression of this disease
may occur if not treated correctly.
Complex Regional Pain Syndrome is a fairly new diagnosis, and there are very little amounts of information on
this condition, thus creating a difficult diagnosis to make (Finnis). However, the patient must live through the
years of pain, most times relieved by pain medication and other pills, sometimes up to 40 per day. Many
patients have a difficult time making it to work and/or school due to the immense amount of pain and rigorous
treatment schedules. I actually missed over 300 days of high school and was forced to go on sick leave from
my job. Bosses and school officials rarely understand or excuse these absences after excessive amounts. Stress
is common and worsens the condition. Life can become quite the chore if this condition is not promptly
addressed.
Treatment regimens are all basically the same if the condition is caught early. This usually includes starting
some type of physical therapy along with 2-3 different types of pills, all addressing different aspects of the
symptoms. If caught a year or so into the condition, with an average amount of progression, a regimen of 3-4
pills along with pain medication will be started and a nerve block is usually common. This is where anesthetic
is administered into the nerve, which can be found in the spine, in order to block pain. A day or so must be
taken off from work and/or school in order to receive this procedure and all its effects. The combination of
these powerful medications has major numbing effects on the brain making it extremely difficult to focus and
function.
If the first set of pills and nerve block fail, another set of pills and another nerve block will be attempted. Pain
medications may become stronger, thus making it even more difficult to participate in normal activities such as
driving and walking, not to mention working and going to school. If this route of treatment doesn’t work, the
ultimate treatment must be attempted, and insurance companies refuse to cover the costs. This makes is
financially difficult and stressful for the individual. Several of the medications prescribed are also not covered
under insurance coverage. Insurance companies claim that these medications and the Ketamine treatment are
experimental. This does have a truth to it because all these methods are fairly new to the medicinal world;
however, they have proved to work for the patients. Most hospitals don’t even offer this treatment, but the
one my mom worked at had a protocol for it, and worker’s compensation does cover this although my mom’s
insurance did not insure such a procedure. Worker’s compensation is just about the only insurance company
that does cover costs. This treatment lasts about one year for extreme cases, and must be given again, but the
body builds a tolerance to it making the Ketamine become less effective every time. A Ketamine treatment
requires about five days in the hospital while an intravenous flow of Ketamine is administered. The
medication has the ability to make one hallucinate, but some individuals just become inebriat[ed] (Harbut and
Correll 151).
Much of normality is lost, and life comes to focus around the condition. Depression is quite common among
such patients. School and work are forced to be placed upon the backburner until individuals can become
refocused on life. Family and friends don’t understand a lot of the time, leaving patients to fend for him or
herself emotionally and physically. Most of the time, the patient never returns to normal, even when in
remission. Extreme fatigue may still occur while in remission. Some patients unfortunately don’t get to
experience prolonged epochs of remission and are reminded everyday of their condition. Patients that do
achieve a weakening of the symptoms or remission must be careful everyday of their lives to not reinjure
themselves or get stepped on. Even getting bumped can cause a patient to go out of remission, possibly even
worsening the condition.
And to think that all of this could pretty much be avoided if doctors would educate themselves and refer
patients to specialty clinics early. Progression of the disease, a loss of normal activity, and a loss of normality
forever are all possible consequences of doctors not diagnosing Reflex Sympathetic Dystrophy/Complex
Regional Pain Syndrome in a timely manner. Doctors need to be more educated and fully believe their patients
when they complain of such symptoms distinct to Reflex Sympathetic Dystrophy. Major, life-altering
complications can be avoided with a prompt diagnosis and treatment. Although the condition is an enigma to
man, if such signs are occurring in a patient, treatment needs to be performed right away. Those that have the
knowledge of the condition need to be contacted as soon as possible. Symptoms can stat occurring as soon as
a few days or weeks after the initial injury and should not be ignored. Even though such a condition is an eye-
opening experience, it is not worth all the turmoil and pain. Unfortunately, some people may go nine or more
years without any other treatment than pain medicine. This kills brain cells after time, especially when
patients build up a tolerance and must take more to get the same effect. In order to avoid these emotional and
physical consequences, action must be taken!
Works Cited
Finniss, Damien, et al. “Complex Regional Pain Syndrome in children and adolescents.” European Journal of
Pain. Nov. 2006. Volume 10. Issue 8. Pages 767-770. Article search. All databases. Thomas Cooper Library,
University of South Carolina. 28 Oct.2007 <http://www.sciencedirect.com>.
Harbut, Ronald and Correll, Graeme. “Successful Treatment of a Nine-Year Case of Complex Regional Pain
Syndrome Type-1 (Reflex Sympathetic Dystrophy) with Intravenous Ketamine-Infusion Therapy in a
Warfarin-Anticoagulated Adult Female Patient.” Pain Medicine 2002. Vol.3, No.2. Academic Search Elite.
EBSCO. Thomas Cooper Library, University of South Carolina. 28 Oct. 2007. <http://web.ebscohost.com>.
Turner-Stokes, L. “Reflex Sympathetic dystrophy-a complex regional pain syndrome.” Disability and
Rehabilitation, 2002. Vol.24, no. 18, 939-947. Academic Search Elite. EBSCO. Thomas Cooper Library,
University of South Carolina. 28 Oct. 2007 <http://web.ebscohost.com>.
Darlaa's speech/presentation given in High School:
How could this be happening to me? What have I done wrong to deserve this? “Pain is only weakness leaving
the body,” says my mind to my monster, RSD, as he carries around his club-like bat and extra sharp sword.
He has inflicted and tortured me with incapacitating pain for over two years. This ongoing battle is both
mental and physical because it involves pain that the doctors claimed did not exist for the first year and a half.
Finally these red and black surges of dull, sharp, and burning pain were discovered to be quite true and serious.
One warm June day, I stood excitedly at the pitchers mound at Austintown Park. It was a great and exciting
game thus far; my whole family and a few friends were present to watch as well. What I did not know was
with the next fateful pitch, my life would be changed forever. I would never view the world the same, nor
could I feel the same about life in general. Without knowing this, I took one deep breath, exhaled, and pitched
a strike. The batter hit a line drive, and it flew so fast and hard that I was not able to stop it short of hitting
me square in the shin. Immediately, my leg began to swell and immense pain surged through my leg to the
point where I could barely walk. With this pain and turmoil emerged my purple, yellow, black, and blue
monster, who was multi-colored and as cold as ice due to his ability to change the color of my leg and to make
it several degrees cooler than my surroundings. To the best of my abilities and with some help of pain
medicines, I blocked the major pain out as best as I could for the rest of the game and season, only to have
another unfortunate accident of the same nature occur a month later. After a slide into home and collision with
the catcher, my personal threshold for pain had been stretched to its limits. There has to be something
seriously wrong. This is the worst pain I have ever experienced. I can’t quit now, that would be surrendering
to weakness.
The regular season was over and now emerged all-star season. I had been chosen to pitch, and I could not pass
up this starting position. I gladly accepted and played the season out, enduring this excruciating pain. I could
feel deep down that no matter how much I ignored my monster, it would not go away because it was
something serious. The doctors all claimed it was just a contusion or deep bruise.
After months of thinking this, no improvement came about; meanwhile, it was time for volleyball. I had
ceased to run my two miles per day because I could no longer block out the worst pain of my life. My
attempts at playing volleyball were not met with success. My leg became even more sensitive to the slightest
touch, especially to ice, which the trainer made me apply for about a half an hour or more before and after
practice. Doctor after doctor could find no diagnosis to match my symptoms and the pain was worsening
with each step of impact I took. Pain killers had become an all too familiar fiasco as I took pill after pill with
little relief.
Now approached the time for my sophomore year to begin. The summer had not gone well, but I had endured
it and attended the first day of school. By the second week, my pain was so strong; it took my mind off my
studies and prevented me from walking. My electric eel-like pain caused by my monster was unbearable, as
was the pain that felt like being hit with a baseball bat in the leg. My eel-like monster also carried his sword,
occasionally causing stabbing pains. Doctors from the area and Cleveland Clinic could not identify my
problem and chose to doubt me on my claim to pain. Why can’t these doctors just believe and help me? I’m
not out to waste their time. I just want to know what’s wrong. This pain is real and won’t stop! Does anyone
believe me?! I missed about nine months of school and was on pain killers all of the time. Somehow I found
inner strength to compensate for my lack of physical strength, and I made up the year of schoolwork through
the home instruction program at Fitch High School.
The summer emerged after the toughest year of my life. I tried to move on, but it was impossible. The
dilapidating pain remained with brute strength. I appreciated every arbitrary pain free moment I could
experience. The challenge to complete everyday tasks reoccurred an infinite number of times. Pain, weakness,
color change, swelling, and extreme sensitivity to touch were the never ceasing symptoms induced by the
monster that had now denied me a life of normalcy. Junior year began, and I attended for the first month,
being tardy here and there. Around this time I was introduced to a doctor who spent time thoroughly
involving himself in my case. He said that if it got worse or continued I needed to see a pain management
specialist right away because it could possibly be Complex Regional Pain Syndrome, formerly known as RSD.
My monster tormented me with each and every moment that he possibly could, smelling of doctors offices
and hospitals, changing from purple and yellow to black and blue. I began to doubt if I was stronger than him.
I was referred to a new doctor, and he concluded that it in fact was RSD. One day before my seventeenth
birthday this news fled through my body. My poor attendance record continued; in fact, it was a challenge
just to awake in the morning. I endured many treatments, but the RSD monster plagued me yet. I felt as if all
my hopes and dreams had expired, until I discovered an experimental treatment known as a Ketamine
infusion. This would help to desensitize the nerves. It helped an immeasurable amount, although my monster
was now quite phantasmagoric and of very psychedelic colors. Although he had withdrawn very much, he
was present with me during my medicated trip to the 1950s that was induced by the Ketamine. For five days
straight, I became lost within this drug, also losing RSD for longer periods at a time. My family, who has a
great ability to keep me grounded, became more significant in my life. I was happy, not only because of the
Ketamine’s greatly inebriating effects, but also because I had finally managed to lose RSD for hours at a time.
After five days in the hospital, it was now time to go home and time to be taken off my list of pain medicines.
The euphoric effects had worn off, and withdrawal set over me for the next two weeks. The current
disputants still fought, RSD and me, physically and mentally. Robust pain still lingered about while I tried
my best to catch up on missed school work and battle this fiend. This ogre would not cease to agonize me so.
With friends and family as my strength, I continued pushing on and tried to complete my missed assignments.
I was not able to sit, stand, or walk in excess, so school was still not an option. As a result, my monster and I
sat home and began home instruction in the afternoons, occasionally having to indulge in pain medicines to
dull the colossal amount of pain that still remained. It was a vast improvement but still not anything close to
normalcy.
I began to dream of the day that I would be able to walk about school, smiling and laughing once again, the day
when I could enjoy a routine and not have to live and focus around pain. I replayed the quote involving pain
and weakness a multitude of times in my mind in a desperate attempt to conquer my monster mentally
because it was impossible to be physically stronger than RSD. Nevertheless, I remained hopeful about one
day beating him mentally and emotionally. The desolate roads I traveled would only be filled with a more
enjoyable life if I were to master and own RSD. With the help of yoga, relaxation, and heat, I was able to
“own” RSD. I still experience his challenges everyday, but not to the full extent as only a year ago. I have now
remained in school for over a month and have been off pain medicine for nineteen weeks. I believe that I have
grown through this experience as an individual. I have learned to always be thankful for everything God has
provided and to never take it for granted because it can be swept away in an instant, never to return again.
Without the help of my friends and family I would not have been able to overcome such trials and tribulations.
Memo written to Darlaa's college professor.
To: Professor Wray
November 9, 2007
Re: The need to understand RSD
A difficult issue reoccurs frequently for those patients experiencing complications with a form of chronic pain
syndrome called Reflex Sympathetic Dystrophy, which is also known as Complex Regional Pain Syndrome.
RSD, or CRPS, is one of the most painful conditions, according to a pain scale, located in Positive Options for
Reflex Sympathetic Dystrophy (RSD): Self Help and Treatment. RSD is ranked above labor pain. This
condition usually results from a minor traumatic injury and is accompanied by never-ending pain that exceeds
the initial pain of the injury. The issue at stake is that individuals around these patients, especially doctors,
are not understanding of this condition, nor do they care to take the time to learn and comprehend it. Due to
these factors, patients are visiting an average of 4.8 doctors before they get a referral to a pain clinic which
usually can diagnose the condition.
This condition is not visible to the naked eye, and people cannot see pain. This is most likely why others don’
t understand this condition. However, with time this condition can worsen and spread if not treated properly.
If athletic trainers or nurses tell a patient to put ice on such an injury that is affected by RSD, the condition
will progress and become extremely exacerbated. Reflex Sympathetic Dystrophy is a debilitating condition at
times, and at other times one can seem alright enough to perform normal tasks. It is mentally, emotionally, and
physically wearing enough on a patient with such a condition to be in constant pain, but having friends,
family members, and doctors who don’t believe this condition exists is especially difficult. This adds to the
stress of not being able to lead a normal life. When an individual experiences ceaseless pain, possibly
accompanied with burning, a loss of feeling, hypersensitivity, swelling, stiffness in the joints, and a difference
of temperature in the location of injury than from the body, something is not right. A diagnosis needs to be
made within a year or less to possibly send the patient into a life-long remission or to just minimize the future
effects the condition will have on the body including progression.
My proposed solution is to inform as many people as I can about this condition. I think it would be very
beneficial for doctors and anyone in the medical field to be educated on this condition. I think that my doctor
from back home needs to write a few articles to inform other doctors of what he knows. This is a policy issue
because it is a general problem that cannot be totally solved. It is in regards to the whole world understanding,
so it is a large issue. This policy is needed to change the view of this condition and how serious it is.
Diagnoses need to be made and people need to understand.
My proposal is the best course of action because it is only helping others, and it is informative. It is not an
extreme measure to take either. Other possible solutions are to turn in the five doctors I met with before I was
able to get a diagnosis. I was told by many of them that there was nothing wrong or that it was just a bruise. I
could turn them into the disabilities act organization or to officials of doctors’ licensing. I could also turn in
the athletic trainer at my school for telling me to put ice on my injury which made the condition worse. These
would be extreme measures to take. If I got these professionals in trouble, I could cause them to not be able to
help others with common problems such as the flu or broken arms. I need to realize that my case is extremely
rare. I can’t cause a professional to possibly lose his/her job because they didn’t recognize my condition.
Action does need to be taken for all to become educated about such a condition.
Writing requirements to get in honors college.
Kierkegaard said it best when he stated, “Life can only be understood backwards; but it must be lived
forwards.” This quote has become an anthem to my life. The more I look back upon the trials that I have
endured, the more I see reason for their occurrences. I have always felt that there is a reason behind every
event that happens in one’s life. I stand true to this opinion even after experiencing several long battles with
Crohn’s Disease and Reflex Sympathetic Dystrophy. Because of the lessons of life that I have attained
throughout this time of suffering, I can honestly say that it was worth it, and I would not change my life for
anything in this world.
At the age of six, I became very ill, missing an average of forty days of school per year. It took several months
to figure out the cause of my symptoms, and during that time I was forced to make up school work and find a
sense of strength within myself to keep on fighting. In the end, I was diagnosed with Crohn’s Disease, but
this is not a condition that simply resolves itself. Many medications with numerous side effects were used to
calm the symptoms of this disease. Crohn’s Disease affects the whole body in numerous ways such as
lethargy, stomach and joint pain, nausea, and diarrhea. It was very difficult to see my fellow peers outside
playing and running about lackadaisically as I sat on the couch trying to get caught up with school work. After
many years, I was able to find the right medications and diet to control this condition. I was able to overcome
this health issue and returned to school with minimal absences beginning in the seventh grade. With the ability
to control this problem, I was able to join the track team, play softball, play several instruments
competitively, such as the oboe, baritone, bassoon, piano, and trombone, and attain good grades.
While enjoying the average adolescent activity of playing softball at the end of my freshmen year of high
school, I was struck with a line drive. At the time, I did not know that this would forever impact my life. I
immediately experienced a swelling and intense pain throughout my whole leg. Weeks later when I was still
experiencing difficulties, doctors told me that it was just a bruise. From this time on I stayed true to myself
and knew that it was not just a bruise.
After seven doctors and two years, I discovered that I had been plagued with one of the most excruciating
forms of pain syndrome, Reflex Sympathetic Dystrophy, or RSD. Reflex Sympathetic Dystrophy, also
known as Complex Regional Pain Syndrome, is a nerve condition with which the nerves give off a pain signal
even though the original injury occurred long ago. Some of the signs and symptoms include: ceaseless “burning
pain,” loss of feeling, hypersensitivity, swelling, stiffness in the joints, difference in temperature from the rest
of the body (usually colder), and/or a color change in the affected area, worsening with a cold climate (Finnis;
Turner-Stokes 939; Harburt and Correll 147). One of my former doctors has actually described it as
“debilitating.”
During this period of time, I missed months of school, experienced pain that was not eased with the most
powerful pain medications, and experienced a loss of normalcy. Year after year I was able to overcome this
condition and make up the numerous amounts of schoolwork that I had missed. During many years I was
forced to attend school and take tests while on pain killers as well thirty other pills that I took daily. I
experienced many side effects from these medications including kidney stones, and I spent several days in the
hospital enduring Ketamine treatments for the RSD. After missing over 300 days of high school, I proved
capable of overcoming adversity once again, especially that which was created by teachers who told me that I
would not make it through classes nor would I graduate on time. Although this negative experience took place,
I persevered and become Valedictorian of my class. Through moving to South Carolina, I have proved that
there is hope for others with my condition, and this is illustrated not only through my improved attendance
but also the fact that I am currently on five medications daily instead of thirty.
Without moving forward throughout the most trying times of my life, I would not be who I am today;
therefore, after looking back I understand the purpose of moving forward throughout my past experiences. If I
would have not endured these battles that life brought my way, my individuality, strength, value of hard
work, and love for my family would not be as evident or perhaps, nonexistent. I have learned that life isn’t
fair but to always welcome challenging experiences because those create strength and individuality. I have also
discovered that we must embrace the good in life because it’s all that we have to get by on. Trials and
tribulations will arise throughout one’s existence; however, one must never give up and must ceaselessly move
forward with brute strength involving soul and passion into everything. Prevalence over obstacles creates
defining moments, thus shaping individuality. Overcoming hardships is impossible without the support of
others, especially family and friends. Throughout all these trials, I had my family by my side. Without them
and these life altering experiences I would not be the person that I am today. I have come to know that strife
will surely pass, and I take trying times as opportunities to grow as an individual, thus delving deeply into all
that I possess. Through this insightful knowledge that I have gained through these experiences, I have the
satisfaction in knowing that I have worked to my full potential in all situations. I feel that I have gained much
insight on life, and I can deal with whatever may come my way.
©2009 dareid007 All rights reserved. Do not use without permission. Contact owner for use.
Email- Darlaa dareid007@hotmail.com
essays regarding her journey with RSD. Some of the following are repetitive only
because they are separate writings. I'm proud to display Darlaa's time and effort here. I
hope you are inspired also.
Darlaa's speech she gave last semester on rsd:
Imagine having the worst pain of your life day after day with no end. Doctors cannot help you, and pain
medicine only slightly dulls the nightmare away. Some doctors have even told you that there's nothing wrong
with you. Welcome to the world of an RSD patient who is out of remission. RSD stands for Reflex
Sympathetic Dystrophy and is a nerve condition with which the nerves give off a pain signal a long time after
a minor injury has occurred. Today I am going to go over the symptoms of RSD and discuss some possible
treatments.
RSD, also known as Complex Regional Pain Syndrome, has many symptoms, but not every RSD patient
experiences exactly the same types or amounts of ailments. An initial injury, pain, swelling, and physical
differences are the main problems associated with this debilitating condition. Injuries that could cause RSD
range from a paper cut or sprained ankle to a broken bone. Pain due to RSD is much worse than that of the
original injury. The pain associated with RSD takes many forms including: a ceaseless burning pain,
hypersensitivity, loss of feeling, spasms of blood vessels and muscles, crushing, or stabbing pain. RSD, or
CRPS, is one of the most painful conditions and is ranked above labor pain, according to a pain scale, located
in one of the only books written on RSD,Positive Options for Reflex Sympathetic Dystrophy (RSD): Self
Help and Treatment. Swelling of the affected area usually also occurs, which in turn causes a stiffness of
joints. The last major symptom of RSD, which may be a major factor in making a diagnosis, is a difference in
temperature, usually colder, and color, usually a purple or black hue, of the affected area as compared to the
rest of the body. Complex Regional Pain Syndrome is a permanent condition and several complications can
occur if not tended to early. Without proper and early treatment, the disease may progress in a worsening of
symptoms, or it could spread throughout the body involving an entire limb or the whole body. According to
Mr. Finniss, a member of the medicine faculty at the University of Sydney, Complex Regional Pain Syndrome
is a fairly new diagnosis, and there are very little amounts of information on this condition, thus creating a
difficult diagnosis.
Sadly, there are very few treatment options available due to the fact that little is known about the condition.
Several cases go undiagnosed for years or even a lifetime. However, those that are fortunate will have options
such as heat, medications, nerve blocks, physical therapy, and implants available to them. Early treatment
provides maximum efficiency, and treatment regimens are all basically the same if the condition is caught
early. Heat can tremendously assist a patient because the applications of it will bring down swelling as well as
soothe the pain. Also, avoiding anything cold will greatly prevent the condition from progressing. Bundling up
during the winter is advised. Many different types of medicines are used in the treatment of RSD including:
analgesics, antidepressants, anticonvulsants, muscle relaxants, NSAIDS, and NMDA receptor blockers. Each
medication attacks the symptoms in a different way. Usually paired with the treatment of pills is a nerve
block. This is a procedure in which an anesthetic is administered into the nerve, located in the spine, in order
to block pain. If multiple attempts at these treatments are unsuccessful, an experimental Ketamine treatment
will be administered, although some hospitals don't even offer this option. Ketamine falls under the category
of NMDA receptor blockers and is known as “special K” on the streets. According to Neurology Today, a
well-known health magazine, Ketamine acts on the nerve as a cast would on a “broken bone.” In my
experience as well as many other patients’ physical therapy is usually completed after a Ketamine treatment.
Special exercises used to lessen hypersensitivity and stiffness are done in a warm therapy pool. The water
reduces the stress and impact that land therapy would create. If all of these options fail, two different
implants may be surgically placed in the patient. One of them is a morphine pump, and it is placed in the
abdomen. It delivers a continuous amount of concentrated morphine into the nerve. The other type of implant
is a neurostimulator. According to the International Research Foundation for RSD/CRPS, a leading research
foundation run by three certified Mds and one PhD, “neurostimulation systems use low-intensity electrical
impulses to keep the pain signals from reaching the brain.” Sometimes, pain will still occur after all these
treatments have been performed, and this is why it is important for an early diagnosis and treatment.
There is no cure for RSD, but there are some treatments available to put this condition in remission. RSD has
many warning signs including an initial injury, pain, swelling, and physical differences, and these symptoms
may be treated with heat, medications, nerve blocks, physical therapy or implants. Always pay attention to
the warning signs that your body provides no matter what doctors may say because you never know what it
may be telling you!
Darlaa's proposal essay:
A Call for RSD Awareness
Pain is natural and it usually has a message; however, there is a population in the world that is told to ignore it
by uninformed doctors, bosses, and school officials, if they attend school. Most doctors today are not
educated on such enigmas as pain syndrome. The Complex Regional Pain Syndrome’s diagnosis is fairly new,
and little information is known about this condition (Finniss). An educational awareness program must be
started to ease the effects of this condition for patients.
Diagnoses are difficult to make due to the ignorance of doctor’s knowledge and the lack of wanting to learn
more. On average, one must see about 4.8 doctors before getting an accurate diagnosis, but there are those have
had to see seven physicians (Finniss). I know from personal experience that the patient must try their best to
survive through these trying times, which may last for years, before they receive an accurate diagnosis and
effective treatment. By this time several different things can occur such as progression, major stress, and a
loss of normality. No one should have to experience such strife just to survive and get by.
The doctors give inaccurate diagnoses or just simply say they do not have a clue as to what is wrong. Of
course they prescribe pain medicine, which does have a quick, momentary fix. After a few days, the powerful
tsunami of pain returns and the patient is left in the dark. The doctors of this world need to pay attention to
the signs and symptoms of debilitating, burning, and crushing pain with a loss of feeling, hypersensitivity,
swelling, stiffness in the joints, color change, and/or a temperature change which is usually colder than the rest
of the body (Harbut and Correll 147). If doctors could only do their jobs and become informed on such a life
destroying condition, patients wouldn’t have to experience such trials and tribulations.
For those patients who attend school, life is made much more difficult and stressful by a majority of the
staffs. Students are told they need to start attending school or else. School officials don’t realize that the
attendance policies are for those that are healthy and able to attend school daily despite the common cold that
may occur. A major condition such as CRPS has exceptions, and the staffs don’t realize this. I was actually
told to drop three of my classes by my teachers because they claimed that I would never pass them. Stress is
evident when such events take place. Students are forced to miss days due to major pain, doctor’s visits to get
an accurate diagnosis, or possibly to undergo specific regimens of treatment and procedures. Of course
makeup work becomes an all too common occurrence for these pain syndrome sufferers. Those staff members
that truly do try to understand are a few in a million. Stress builds from unfinished work, missed days, and
school systems trying to get one in trouble for missing school. Life becomes far too difficult just to get by,
and this isn’t right to do to anyone regardless of age.
The loved ones of these victims don’t quite understand either. Sometimes they may think the patient to be
faking or acting a bit. The family and friends of patients can only see that the victim physically appears
normal. Uninformed, average people do not understand the deep medical explanation behind such an enigma of
a condition. Usually when the patient needs the support of their friends and family most is when they get
frustrated and withdraw from sight. Friends and family need to understand and not get upset with the patient
if he or she can not meet previous commitments because this is normal for such a condition. It takes over the
body and barely allows the patient to think clearly if at all. There may actually be periods of time in which
the sufferer sleeps for twenty or more hours at a time. This is due to intense pain and stress as well as the
unavoidable side effects of medications which all cause exhaustion. Family members and friends should not
take this personally. Sometimes the family and friends make things dramatic and cause even more stress for
the patient when things aren’t the way of the past.
Stress is a contributing factor to the exacerbation of this condition. CRPS, also known as Reflex Sympathetic
Dystrophy, can be brought to magnified extremes if prompted by enough stress let alone other factors such as
not being diagnosed in a timely manner and progression. Stress can be caused by a number of factors, but the
most familiar to sufferers are finances due to the inability to work and medical bills. Support, financially or
emotionally, from others is definitely helpful to patients and can ease some of their pain. Knowing there are
people that are standing by strongly in support of the sufferer alleviates a bit of the stress thus reducing some
of the pain.
Those individuals around the patient also need to understand that they can’t just bump a patient in the injured
area and be able to walk away after a classic, “I’m sorry.” A simple bump can cause major chaos and pain in
one’s life. Caution must be demonstrated when one is near a Reflex Sympathetic Dystrophy, abbreviated
RSD, sufferer. If the condition was in remission, a simple bump can cause Complex Regional Pain Syndrome
to flare up again because this condition is basically an overreaction of the nerve that sends the pain signals. If
the condition was already in full swing, then it could become worsened if the affected and/or surrounding area
was to be bumped. This could have major damaging effects for a lifetime. Others need to be wary and
courteous of those that suffer from this debilitating condition. This can only be accomplished with educating
people about Complex Regional Pain Syndrome.
In order to better facilitate a better understanding of RSD, I propose that an association dedicated to RSD
education and awareness be started. My proposal also involves this education and awareness outreach
educating doctors so they can better recognize such a condition. This is the best solution because it will reach
as many people as possible and inform them of the issue that has been in existence for some time although a
majority possesses no knowledge of it. Such an organization is better than letting individuals suffer silently as
they do now because a true understanding can be acquired.
Others can try their best to identify with the victim and help them out physically, emotionally, or financially.
The association should also take donations to assist patients in paying their medical bills because this will
help eliminate part of the stress that arises. The information that will be distributed and discussed in seminars
around the nation will also assist in the elimination of stress because authorities causing this stress will be
informed of this terrible condition and how their cause of stress worsens the condition. The best solution is
informing people because we cannot allow this to go on any longer. The way we are leaving patients to fend
for themselves is inhumane, especially when they are unable to fight back. We must inform the nation and
begin by establishing a website. Then we need to talk to doctors who do understand this condition and ask
them to assist in writing informational pamphlets that can be distributed and posted on our RSD/CRPS
awareness website. Next, we should also start taking collections for the association to function with as well as
donations for the patients’ needs. Collections could also be used to generate research funding to discover more
about RSD. By doing all this, we can make this world a more peaceful place for sufferers and help ease their
pain and stress.
The benefits outweigh the costs because it will help relieve colossal amounts of stress and pain which
correlate with one another. An understanding of this condition for non-sufferers will be more evident. Put
yourself in the shoes of sufferers and try to picture enduring pain exceeding that of a broken bone or kidney
stone but on a continuous basis.
Something must be done right away because the current status is inhumane. We are to help those in
destitution, and patients with RSD are very much in need. Research and awareness must be done because this
condition destroys lives. People capable of great things are being held back, and it may become too late for
them to regain what they once had let alone what they could accomplish.
It will also greatly assist families and friends of patients in understanding such a complex condition. School
staffs of victims can also be made aware of the debilitating effects of this condition, and hopefully they will
become more sympathetic to those sufferers of RSD. Through this awareness program, educational literature
will be distributed to those needing a better comprehension of Complex Regional Pain Syndrome. Volunteers
will be needed to make a web page and to help distribute literature with explanations of the condition.
Donations would also be necessary to help make all of this possible.
If this awareness program is not started, more patients will experience the worst distress of their lives. This
may continue on forever with no escape. We must help those patients in need to get the treatment they
deserve from doctors, schools, families, and friends!
Works Cited
Finniss, Damien, et al. “Complex Regional Pain Syndrome in children and adolescents.” European Journal of
Pain. Nov. 2006. Volume 10. Issue 8. Pages 767-770. Article search. All databases. Thomas Cooper Library,
University of South Carolina. 28 Oct.2007 <http://www.sciencedirect.com>.
Harbut, Ronald and Correll, Graeme. “Successful Treatment of a Nine-Year Case of Complex Regional Pain
Syndrome Type-1 (Reflex Sympathetic Dystrophy) with Intravenous Ketamine-Infusion Therapy in a
Warfarin-Anticoagulated Adult Female Patient.” Pain Medicine 2002. Vol.3, No.2. Academic Search Elite.
EBSCO. Thomas Cooper Library, University of South Carolina. 28 Oct. 2007. <http://web.ebscohost.com>.
A casual essay Darlaa wrote a few years back
Imagine that you are experiencing the worst pain of your life, say comparable to having a broken bone, on a
daily basis. It has been ongoing since an injury occurred while playing softball about two years ago. I gets to
the point where you can’t eat, can’t run, and can’t sleep. You’re missing out on an increasingly alarming
amount of activities. Your one mile of running per day has ceased. This is a normal occurrence in the life of
those who have been diagnosed late or not at all with Reflex Sympathetic Dystrophy, a debilitating form of
pain syndrome.
Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome, is a nerve condition with
which the nerves give off a pain signal even though the original injury occurred long ago, possibly four years
or more ago. Some of the signs and symptoms include: ceaseless “burning pain,” loss of feeling,
hypersensitivity, swelling, stiffness in the joints, difference in temperature from the rest of the body (usually
colder), and/or color change in the affected area (Finnis; Turner-Stokes 939; Harburt and Correll 147). Extreme
fatigue also occurs due to the intense pain. Reflex Sympathetic Dystrophy, RSD, can be a permanent
condition and several complications can arise if not attended to and diagnosed properly. These possible
complications which may result from a lack of or a late diagnosis from a doctor are a progression of the
condition, a loss of normal activity, and possibly a loss of normality forever.
It is estimated that adult patients had to see about 4.8 separate doctors before they were sent to a pain clinic
to be diagnosed although there are the cases of RSD in which patients get injured and are almost immediately
diagnosed and treated for the condition (Finnis). Some individuals go nine years without a diagnosis, and
others never will get a proper diagnosis. I, personally, went to seven doctors, and two and a half years after
my softball injury. I was then referred to a pain clinic where I was diagnosed on the spot. By the time they
began the rigorous treatment on this condition, it had progressed tremendously. This is partly attributed to
my athletic trainer’s advice to put ice on my whole leg in order to control the swelling and pain, not to
mention my family doctor telling me that my injury was a bruise for a year. Ice and cold actually progress this
condition more, and intensify its effects. Climate plays a big rule in the easing or worsening of this condition.
There are many more cases of Complex Regional Pain Syndrome in the north as compared to the south. The
icy cold of the north exacerbates and progresses this disease. Doctors, however, don’t mention that weather
can make a difference in the maintaining of this condition until asked. Progression can be characterized by
worsening of the pain and other symptoms, an experience of more symptoms, and/or a spreading of the
condition from one limb or area of the body to another. Whatever the case may be, progression of this disease
may occur if not treated correctly.
Complex Regional Pain Syndrome is a fairly new diagnosis, and there are very little amounts of information on
this condition, thus creating a difficult diagnosis to make (Finnis). However, the patient must live through the
years of pain, most times relieved by pain medication and other pills, sometimes up to 40 per day. Many
patients have a difficult time making it to work and/or school due to the immense amount of pain and rigorous
treatment schedules. I actually missed over 300 days of high school and was forced to go on sick leave from
my job. Bosses and school officials rarely understand or excuse these absences after excessive amounts. Stress
is common and worsens the condition. Life can become quite the chore if this condition is not promptly
addressed.
Treatment regimens are all basically the same if the condition is caught early. This usually includes starting
some type of physical therapy along with 2-3 different types of pills, all addressing different aspects of the
symptoms. If caught a year or so into the condition, with an average amount of progression, a regimen of 3-4
pills along with pain medication will be started and a nerve block is usually common. This is where anesthetic
is administered into the nerve, which can be found in the spine, in order to block pain. A day or so must be
taken off from work and/or school in order to receive this procedure and all its effects. The combination of
these powerful medications has major numbing effects on the brain making it extremely difficult to focus and
function.
If the first set of pills and nerve block fail, another set of pills and another nerve block will be attempted. Pain
medications may become stronger, thus making it even more difficult to participate in normal activities such as
driving and walking, not to mention working and going to school. If this route of treatment doesn’t work, the
ultimate treatment must be attempted, and insurance companies refuse to cover the costs. This makes is
financially difficult and stressful for the individual. Several of the medications prescribed are also not covered
under insurance coverage. Insurance companies claim that these medications and the Ketamine treatment are
experimental. This does have a truth to it because all these methods are fairly new to the medicinal world;
however, they have proved to work for the patients. Most hospitals don’t even offer this treatment, but the
one my mom worked at had a protocol for it, and worker’s compensation does cover this although my mom’s
insurance did not insure such a procedure. Worker’s compensation is just about the only insurance company
that does cover costs. This treatment lasts about one year for extreme cases, and must be given again, but the
body builds a tolerance to it making the Ketamine become less effective every time. A Ketamine treatment
requires about five days in the hospital while an intravenous flow of Ketamine is administered. The
medication has the ability to make one hallucinate, but some individuals just become inebriat[ed] (Harbut and
Correll 151).
Much of normality is lost, and life comes to focus around the condition. Depression is quite common among
such patients. School and work are forced to be placed upon the backburner until individuals can become
refocused on life. Family and friends don’t understand a lot of the time, leaving patients to fend for him or
herself emotionally and physically. Most of the time, the patient never returns to normal, even when in
remission. Extreme fatigue may still occur while in remission. Some patients unfortunately don’t get to
experience prolonged epochs of remission and are reminded everyday of their condition. Patients that do
achieve a weakening of the symptoms or remission must be careful everyday of their lives to not reinjure
themselves or get stepped on. Even getting bumped can cause a patient to go out of remission, possibly even
worsening the condition.
And to think that all of this could pretty much be avoided if doctors would educate themselves and refer
patients to specialty clinics early. Progression of the disease, a loss of normal activity, and a loss of normality
forever are all possible consequences of doctors not diagnosing Reflex Sympathetic Dystrophy/Complex
Regional Pain Syndrome in a timely manner. Doctors need to be more educated and fully believe their patients
when they complain of such symptoms distinct to Reflex Sympathetic Dystrophy. Major, life-altering
complications can be avoided with a prompt diagnosis and treatment. Although the condition is an enigma to
man, if such signs are occurring in a patient, treatment needs to be performed right away. Those that have the
knowledge of the condition need to be contacted as soon as possible. Symptoms can stat occurring as soon as
a few days or weeks after the initial injury and should not be ignored. Even though such a condition is an eye-
opening experience, it is not worth all the turmoil and pain. Unfortunately, some people may go nine or more
years without any other treatment than pain medicine. This kills brain cells after time, especially when
patients build up a tolerance and must take more to get the same effect. In order to avoid these emotional and
physical consequences, action must be taken!
Works Cited
Finniss, Damien, et al. “Complex Regional Pain Syndrome in children and adolescents.” European Journal of
Pain. Nov. 2006. Volume 10. Issue 8. Pages 767-770. Article search. All databases. Thomas Cooper Library,
University of South Carolina. 28 Oct.2007 <http://www.sciencedirect.com>.
Harbut, Ronald and Correll, Graeme. “Successful Treatment of a Nine-Year Case of Complex Regional Pain
Syndrome Type-1 (Reflex Sympathetic Dystrophy) with Intravenous Ketamine-Infusion Therapy in a
Warfarin-Anticoagulated Adult Female Patient.” Pain Medicine 2002. Vol.3, No.2. Academic Search Elite.
EBSCO. Thomas Cooper Library, University of South Carolina. 28 Oct. 2007. <http://web.ebscohost.com>.
Turner-Stokes, L. “Reflex Sympathetic dystrophy-a complex regional pain syndrome.” Disability and
Rehabilitation, 2002. Vol.24, no. 18, 939-947. Academic Search Elite. EBSCO. Thomas Cooper Library,
University of South Carolina. 28 Oct. 2007 <http://web.ebscohost.com>.
Darlaa's speech/presentation given in High School:
How could this be happening to me? What have I done wrong to deserve this? “Pain is only weakness leaving
the body,” says my mind to my monster, RSD, as he carries around his club-like bat and extra sharp sword.
He has inflicted and tortured me with incapacitating pain for over two years. This ongoing battle is both
mental and physical because it involves pain that the doctors claimed did not exist for the first year and a half.
Finally these red and black surges of dull, sharp, and burning pain were discovered to be quite true and serious.
One warm June day, I stood excitedly at the pitchers mound at Austintown Park. It was a great and exciting
game thus far; my whole family and a few friends were present to watch as well. What I did not know was
with the next fateful pitch, my life would be changed forever. I would never view the world the same, nor
could I feel the same about life in general. Without knowing this, I took one deep breath, exhaled, and pitched
a strike. The batter hit a line drive, and it flew so fast and hard that I was not able to stop it short of hitting
me square in the shin. Immediately, my leg began to swell and immense pain surged through my leg to the
point where I could barely walk. With this pain and turmoil emerged my purple, yellow, black, and blue
monster, who was multi-colored and as cold as ice due to his ability to change the color of my leg and to make
it several degrees cooler than my surroundings. To the best of my abilities and with some help of pain
medicines, I blocked the major pain out as best as I could for the rest of the game and season, only to have
another unfortunate accident of the same nature occur a month later. After a slide into home and collision with
the catcher, my personal threshold for pain had been stretched to its limits. There has to be something
seriously wrong. This is the worst pain I have ever experienced. I can’t quit now, that would be surrendering
to weakness.
The regular season was over and now emerged all-star season. I had been chosen to pitch, and I could not pass
up this starting position. I gladly accepted and played the season out, enduring this excruciating pain. I could
feel deep down that no matter how much I ignored my monster, it would not go away because it was
something serious. The doctors all claimed it was just a contusion or deep bruise.
After months of thinking this, no improvement came about; meanwhile, it was time for volleyball. I had
ceased to run my two miles per day because I could no longer block out the worst pain of my life. My
attempts at playing volleyball were not met with success. My leg became even more sensitive to the slightest
touch, especially to ice, which the trainer made me apply for about a half an hour or more before and after
practice. Doctor after doctor could find no diagnosis to match my symptoms and the pain was worsening
with each step of impact I took. Pain killers had become an all too familiar fiasco as I took pill after pill with
little relief.
Now approached the time for my sophomore year to begin. The summer had not gone well, but I had endured
it and attended the first day of school. By the second week, my pain was so strong; it took my mind off my
studies and prevented me from walking. My electric eel-like pain caused by my monster was unbearable, as
was the pain that felt like being hit with a baseball bat in the leg. My eel-like monster also carried his sword,
occasionally causing stabbing pains. Doctors from the area and Cleveland Clinic could not identify my
problem and chose to doubt me on my claim to pain. Why can’t these doctors just believe and help me? I’m
not out to waste their time. I just want to know what’s wrong. This pain is real and won’t stop! Does anyone
believe me?! I missed about nine months of school and was on pain killers all of the time. Somehow I found
inner strength to compensate for my lack of physical strength, and I made up the year of schoolwork through
the home instruction program at Fitch High School.
The summer emerged after the toughest year of my life. I tried to move on, but it was impossible. The
dilapidating pain remained with brute strength. I appreciated every arbitrary pain free moment I could
experience. The challenge to complete everyday tasks reoccurred an infinite number of times. Pain, weakness,
color change, swelling, and extreme sensitivity to touch were the never ceasing symptoms induced by the
monster that had now denied me a life of normalcy. Junior year began, and I attended for the first month,
being tardy here and there. Around this time I was introduced to a doctor who spent time thoroughly
involving himself in my case. He said that if it got worse or continued I needed to see a pain management
specialist right away because it could possibly be Complex Regional Pain Syndrome, formerly known as RSD.
My monster tormented me with each and every moment that he possibly could, smelling of doctors offices
and hospitals, changing from purple and yellow to black and blue. I began to doubt if I was stronger than him.
I was referred to a new doctor, and he concluded that it in fact was RSD. One day before my seventeenth
birthday this news fled through my body. My poor attendance record continued; in fact, it was a challenge
just to awake in the morning. I endured many treatments, but the RSD monster plagued me yet. I felt as if all
my hopes and dreams had expired, until I discovered an experimental treatment known as a Ketamine
infusion. This would help to desensitize the nerves. It helped an immeasurable amount, although my monster
was now quite phantasmagoric and of very psychedelic colors. Although he had withdrawn very much, he
was present with me during my medicated trip to the 1950s that was induced by the Ketamine. For five days
straight, I became lost within this drug, also losing RSD for longer periods at a time. My family, who has a
great ability to keep me grounded, became more significant in my life. I was happy, not only because of the
Ketamine’s greatly inebriating effects, but also because I had finally managed to lose RSD for hours at a time.
After five days in the hospital, it was now time to go home and time to be taken off my list of pain medicines.
The euphoric effects had worn off, and withdrawal set over me for the next two weeks. The current
disputants still fought, RSD and me, physically and mentally. Robust pain still lingered about while I tried
my best to catch up on missed school work and battle this fiend. This ogre would not cease to agonize me so.
With friends and family as my strength, I continued pushing on and tried to complete my missed assignments.
I was not able to sit, stand, or walk in excess, so school was still not an option. As a result, my monster and I
sat home and began home instruction in the afternoons, occasionally having to indulge in pain medicines to
dull the colossal amount of pain that still remained. It was a vast improvement but still not anything close to
normalcy.
I began to dream of the day that I would be able to walk about school, smiling and laughing once again, the day
when I could enjoy a routine and not have to live and focus around pain. I replayed the quote involving pain
and weakness a multitude of times in my mind in a desperate attempt to conquer my monster mentally
because it was impossible to be physically stronger than RSD. Nevertheless, I remained hopeful about one
day beating him mentally and emotionally. The desolate roads I traveled would only be filled with a more
enjoyable life if I were to master and own RSD. With the help of yoga, relaxation, and heat, I was able to
“own” RSD. I still experience his challenges everyday, but not to the full extent as only a year ago. I have now
remained in school for over a month and have been off pain medicine for nineteen weeks. I believe that I have
grown through this experience as an individual. I have learned to always be thankful for everything God has
provided and to never take it for granted because it can be swept away in an instant, never to return again.
Without the help of my friends and family I would not have been able to overcome such trials and tribulations.
Memo written to Darlaa's college professor.
To: Professor Wray
November 9, 2007
Re: The need to understand RSD
A difficult issue reoccurs frequently for those patients experiencing complications with a form of chronic pain
syndrome called Reflex Sympathetic Dystrophy, which is also known as Complex Regional Pain Syndrome.
RSD, or CRPS, is one of the most painful conditions, according to a pain scale, located in Positive Options for
Reflex Sympathetic Dystrophy (RSD): Self Help and Treatment. RSD is ranked above labor pain. This
condition usually results from a minor traumatic injury and is accompanied by never-ending pain that exceeds
the initial pain of the injury. The issue at stake is that individuals around these patients, especially doctors,
are not understanding of this condition, nor do they care to take the time to learn and comprehend it. Due to
these factors, patients are visiting an average of 4.8 doctors before they get a referral to a pain clinic which
usually can diagnose the condition.
This condition is not visible to the naked eye, and people cannot see pain. This is most likely why others don’
t understand this condition. However, with time this condition can worsen and spread if not treated properly.
If athletic trainers or nurses tell a patient to put ice on such an injury that is affected by RSD, the condition
will progress and become extremely exacerbated. Reflex Sympathetic Dystrophy is a debilitating condition at
times, and at other times one can seem alright enough to perform normal tasks. It is mentally, emotionally, and
physically wearing enough on a patient with such a condition to be in constant pain, but having friends,
family members, and doctors who don’t believe this condition exists is especially difficult. This adds to the
stress of not being able to lead a normal life. When an individual experiences ceaseless pain, possibly
accompanied with burning, a loss of feeling, hypersensitivity, swelling, stiffness in the joints, and a difference
of temperature in the location of injury than from the body, something is not right. A diagnosis needs to be
made within a year or less to possibly send the patient into a life-long remission or to just minimize the future
effects the condition will have on the body including progression.
My proposed solution is to inform as many people as I can about this condition. I think it would be very
beneficial for doctors and anyone in the medical field to be educated on this condition. I think that my doctor
from back home needs to write a few articles to inform other doctors of what he knows. This is a policy issue
because it is a general problem that cannot be totally solved. It is in regards to the whole world understanding,
so it is a large issue. This policy is needed to change the view of this condition and how serious it is.
Diagnoses need to be made and people need to understand.
My proposal is the best course of action because it is only helping others, and it is informative. It is not an
extreme measure to take either. Other possible solutions are to turn in the five doctors I met with before I was
able to get a diagnosis. I was told by many of them that there was nothing wrong or that it was just a bruise. I
could turn them into the disabilities act organization or to officials of doctors’ licensing. I could also turn in
the athletic trainer at my school for telling me to put ice on my injury which made the condition worse. These
would be extreme measures to take. If I got these professionals in trouble, I could cause them to not be able to
help others with common problems such as the flu or broken arms. I need to realize that my case is extremely
rare. I can’t cause a professional to possibly lose his/her job because they didn’t recognize my condition.
Action does need to be taken for all to become educated about such a condition.
Writing requirements to get in honors college.
Kierkegaard said it best when he stated, “Life can only be understood backwards; but it must be lived
forwards.” This quote has become an anthem to my life. The more I look back upon the trials that I have
endured, the more I see reason for their occurrences. I have always felt that there is a reason behind every
event that happens in one’s life. I stand true to this opinion even after experiencing several long battles with
Crohn’s Disease and Reflex Sympathetic Dystrophy. Because of the lessons of life that I have attained
throughout this time of suffering, I can honestly say that it was worth it, and I would not change my life for
anything in this world.
At the age of six, I became very ill, missing an average of forty days of school per year. It took several months
to figure out the cause of my symptoms, and during that time I was forced to make up school work and find a
sense of strength within myself to keep on fighting. In the end, I was diagnosed with Crohn’s Disease, but
this is not a condition that simply resolves itself. Many medications with numerous side effects were used to
calm the symptoms of this disease. Crohn’s Disease affects the whole body in numerous ways such as
lethargy, stomach and joint pain, nausea, and diarrhea. It was very difficult to see my fellow peers outside
playing and running about lackadaisically as I sat on the couch trying to get caught up with school work. After
many years, I was able to find the right medications and diet to control this condition. I was able to overcome
this health issue and returned to school with minimal absences beginning in the seventh grade. With the ability
to control this problem, I was able to join the track team, play softball, play several instruments
competitively, such as the oboe, baritone, bassoon, piano, and trombone, and attain good grades.
While enjoying the average adolescent activity of playing softball at the end of my freshmen year of high
school, I was struck with a line drive. At the time, I did not know that this would forever impact my life. I
immediately experienced a swelling and intense pain throughout my whole leg. Weeks later when I was still
experiencing difficulties, doctors told me that it was just a bruise. From this time on I stayed true to myself
and knew that it was not just a bruise.
After seven doctors and two years, I discovered that I had been plagued with one of the most excruciating
forms of pain syndrome, Reflex Sympathetic Dystrophy, or RSD. Reflex Sympathetic Dystrophy, also
known as Complex Regional Pain Syndrome, is a nerve condition with which the nerves give off a pain signal
even though the original injury occurred long ago. Some of the signs and symptoms include: ceaseless “burning
pain,” loss of feeling, hypersensitivity, swelling, stiffness in the joints, difference in temperature from the rest
of the body (usually colder), and/or a color change in the affected area, worsening with a cold climate (Finnis;
Turner-Stokes 939; Harburt and Correll 147). One of my former doctors has actually described it as
“debilitating.”
During this period of time, I missed months of school, experienced pain that was not eased with the most
powerful pain medications, and experienced a loss of normalcy. Year after year I was able to overcome this
condition and make up the numerous amounts of schoolwork that I had missed. During many years I was
forced to attend school and take tests while on pain killers as well thirty other pills that I took daily. I
experienced many side effects from these medications including kidney stones, and I spent several days in the
hospital enduring Ketamine treatments for the RSD. After missing over 300 days of high school, I proved
capable of overcoming adversity once again, especially that which was created by teachers who told me that I
would not make it through classes nor would I graduate on time. Although this negative experience took place,
I persevered and become Valedictorian of my class. Through moving to South Carolina, I have proved that
there is hope for others with my condition, and this is illustrated not only through my improved attendance
but also the fact that I am currently on five medications daily instead of thirty.
Without moving forward throughout the most trying times of my life, I would not be who I am today;
therefore, after looking back I understand the purpose of moving forward throughout my past experiences. If I
would have not endured these battles that life brought my way, my individuality, strength, value of hard
work, and love for my family would not be as evident or perhaps, nonexistent. I have learned that life isn’t
fair but to always welcome challenging experiences because those create strength and individuality. I have also
discovered that we must embrace the good in life because it’s all that we have to get by on. Trials and
tribulations will arise throughout one’s existence; however, one must never give up and must ceaselessly move
forward with brute strength involving soul and passion into everything. Prevalence over obstacles creates
defining moments, thus shaping individuality. Overcoming hardships is impossible without the support of
others, especially family and friends. Throughout all these trials, I had my family by my side. Without them
and these life altering experiences I would not be the person that I am today. I have come to know that strife
will surely pass, and I take trying times as opportunities to grow as an individual, thus delving deeply into all
that I possess. Through this insightful knowledge that I have gained through these experiences, I have the
satisfaction in knowing that I have worked to my full potential in all situations. I feel that I have gained much
insight on life, and I can deal with whatever may come my way.
©2009 dareid007 All rights reserved. Do not use without permission. Contact owner for use.
Email- Darlaa dareid007@hotmail.com
Reflex Sympathetic Dystrophy Syndrome
Complex Regional Pain Syndrome
RSD(S)-CRPS Advisory
Complex Regional Pain Syndrome
RSD(S)-CRPS Advisory
"What doesn't kill us only makes
us stronger."
us stronger."
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