Tale of Fire
Pain; everyone
experiences this affliction at some point, a scratch, a cut, a burn, a stubbed
toe. There are some that experience more than even the infamous stub, like back
pain, neck aches, hip/knee pain, and the list goes on. Then, there are those
pains on another level such as child birth that push pain thresholds even
further. But, there is yet another category that stretches beyond all the aforementioned
to place filled with many aspects compounded creating a place many would have
difficulty imagining, not of their own fault, it can be hard to imagine on such
a magnitude outside of regularities. Placing one’s self in another’s shoes can
be a challenge for many as well, even though some would like to think
otherwise. That’s not necessarily bad, it’s just human nature. Not having a
frame of reference exacerbates un-relatability, or simply put, having no personal
experience to base off, to match against someone else’s, can add further
complications to understanding.
First, before we
explore this further together, let’s look a little deeper starting here with
this image;
Take a moment to look it
over. Try and place pain you have gone through or currently experience somewhere,
legitimately, on this chart. Now, take the time to match this up with the pain
you have seen a loved one suffer through, and how they must have felt. I should
mention; pain can be a lose word. Pain is largely subjective and can be
different spanning across a sea of people and their experiences, as well as
their ability to tolerate pain. My simple words on this subject matter were
addressed by Ronald Melzack and Warren Torgerson (1971) out of McGill
University in Quebec, Canada.
The
image you saw earlier is the McGill Pain Index. This resulted from the work of
Melzack and Torgerson through the utilization of the McGill Pain Questionnaire
that gathered information from a large number of patients compiling large
amounts of data such as the number scores most of us are familiar with, on a
scale from one to ten…, sound familiar? Additionally, they considered the
descriptive words, and the consistency of the experienced pain. Now, I am aware
not everyone has the same love of research and data as I do, so I’ll leave it
short. Their work has withstood all the tests placed upon it since its earlier
days and remains a solid method of comparison.
Now
is the time to explore the upper level of that image above. Feel free to check
it out again. You may wonder what that highest mark is, RSD/CRPS. Those letters
represent Reflex Sympathetic Dystrophy, or Complex Regional Pain Syndrome. So,
those with inquiring minds might ask, what does that actually mean? Well, let’s
look deeper into that as well.
RSD/CRPS is typically medically described as follows;
1. Constant chronic burning pain - The
pain, which is usually significantly greater than the original event/injury;
though the affected area may feel cold to the touch to the patient it feels as
though it is literally on fire; and is ranked as the most painful form of lasting
pain today by the McGILL Pain Index. This symptom also includes allodynia,
which is an extreme sensitivity to touch, sound, temperature, and vibration.
2. Inflammation - this can affect the
appearance of the skin, bruising, mottling, tiny red spots, shiny, purplish
look; as well as affect the skin temperature of the affected area, cause
excessive sweating, etc.
3. Spasms - in blood vessels
(vasoconstriction) and muscles (sometimes referred to as rolling spasms) of the
extremities.
4. Insomnia/Emotional Disturbance -
includes the major changes to the limbic system such as short-term memory
problems, concentration difficulties, sleep disturbances, confusion, irritability,
and a host of other additional symptoms.
Symptoms
such as these can be in any area of the body such as eyes and ears, but mostly
in extremities such as hands, arms, legs, and feet. It is usually brought about
by some injury or trauma to the area, and is far worse than the initial pain of
the original injury. There is the possibility for the condition to spread over
time, such as extending up the leg or arm, or even encompass the entire body in
more rare occasions. There is a distinction between those with CRPS Type I, and
those with CRPS Type II which carries various differences such as in the extent
of the nerve injury. This often leaves many people who suffer from it
debilitated and unable to carry out what most would consider a regular healthy
life.
Those
are just words, however; it is another thing to experience them first hand, as
is the case in every situation thus, the brief explanation of the McGill Pain
Index as a method to aid in understanding and relatability. Keeping in mind
everything we have learned so far together, now also imagine all of these
things remaining constant, never ending, a perpetual maddening reality.
In a
brief history of the condition, it can be first seen documented as far back as
the American Civil War. Silas Weir Mitchell MD (1861 – 1865) described pain
that continued even after bullets were removed from soldiers, and he made note
of the consistent burning nature of this pain in his book Gunshots Wounds and Other Injuries of Nerves (1864). He named this pain Causalgia, which is Greek for burning pain;
he also makes note of the major symptoms we talked about. Along with William
Livingston (1892-1966) and Rene Leriche (1879–1955) provided a great deal to
the knowledge of CRPS.
A quote from Silas Weir Mitchell (1864);
“Perhaps few persons
who are not physicians can realize the influence of which long-continued
and unendurable pain can have upon both body and mind”.
Silas Weir Mitchell “Nerve Injuries” 1864
Silas Weir Mitchell “Nerve Injuries” 1864
However, this condition is
largely absent from everyday individuals and medical professionals alike,
though it has seen more recognition over the years. But who gets this
affliction? There are an estimated 1.5 to 3 million children, women, and men in
the United States alone that become victims. There are common treatments in an
effort to alleviate, at least in part, some of the aforementioned symptoms we
discussed such as, medications, various nerve blocks, stimulators, or physical
therapy, though they may give limited relief or can be ineffective in some cases.
Many
of those victims are constantly asked, “What does it feel like?” This can be a
difficult thing for a number of reasons. Depending on who’s asking, answers can
vary considerably, and it can just be naturally arduous to explain for people
to have an adequate representation.
I have read numerous explanations over the course of years reading testimonies and people’s tales of affliction. Typically, answers consist of imagining pouring gasoline over your hand, leg, or foot, lighting it one fire, and never putting it out, an eternal fire that cannot be extinguished no matter how much you may wish it or beg it to stop. Some say it is as if they have been wrapped in barbed wire, and lit on fire in an endless twister of sharp pain and conflagration. Envision placing your hand on a stove burner, and staying there for eternity, your hand never burning away, the flames at no time dying down, no amount of water could hope to douse the inferno, though it may try in vain. Now imagine any touch, breath, or tremor only causes this extreme, vast, eternal pain to increase.
There
is yet another aspect to sufferers of CRPS, usually over looked except form
those whom have lived it, and understand. Displaying this to others, friends,
possible future friends, family, love interests, those close to the heart or
hope to one day be close to, can be extremely difficult. Great deals of them do
not want to scare people away, nor worry those they love. They do not want them
to know how much they suffer, how difficult everyday life can be or how taxing
and exhausting simple tasks as easy as standing up to use the restroom or
walking up stairs can be. They resort to displaying their fortitude saying such
things as “I’m fine.”, “It’s not so bad”, “It is nothing I can’t handle.”,
“It’s okay.”, and anything else to diminish the actuality or drive attention
away. The longer one does this, the longer they mask the pain, the more skilled
they become at it, even though they suffer terribly. Additionally, not
discussing fully or thinking too in-depth about it can act as an aid in
diminishing its hold. This, of course, adds even more stress and complications.
One
might ask, “Why do you care?”, or “Why is this important to you?” or even “How
do you know all of this?” Well, a part of it comes from reading consistently
for a number of years, looking into advancements, reading off of medical web
sites, reading posts, descriptions, or tales from those who have been living
with it.
The other part, the biggest part, the most important
part,
Is because I am one of those afflicted people,
But do not worry, I’m fine…nothing I can’t handle.
A large portion of information on CRPS/RSD is collected at
American RSDHope. Their web site: http://www.rsdhope.org
