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.
RSD(s)CRPS Advisory has been granted written permission to publish Darlaa's essays.-
©2009=2010 dareid007 All rights reserved. Do not use without permission. Contact owner
for use. Contact Darlaa here
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.
RSD(s)CRPS Advisory has been granted written permission to publish Darlaa's essays.-
©2009=2010 dareid007 All rights reserved. Do not use without permission. Contact owner
for use. Contact Darlaa here
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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