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;

                        

                                       http://www.rsdhope.org/mcgill-pain-index---where-is-crps-pain-ranked.html

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

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