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CRPS: The Condition of Hell

If you're wondering where I went, don't worry. Although my stress levels have been incredibly high, nothing horrible has happened in the last week, except for finals and end of the semester craziness. I wanted to share the paper I've been working on with all of you.

The idea of this is to analyze both the science and societal views of CRPS and chronic pain. I don't want to explain too much, but I will add that I didn't get to write even close to all I learned, but I did work hard on it, and am pretty happy I got the chance to learn and examine, even though it is honestly one of the hardest papers I've ever written. With that disclaimer, I hope this helps those of you who are curious to understand this condition a little more.



CRPS: The Condition of Hell



"If hell was a medical condition, it might look something like Reflex Sympathetic Dystrophy,” a respected physician noted (Moskowitz and Lang, 2003). Few people can imagine an injury becoming more painful as time passes; a sprained ankle which should heal within a month swelling to the size of a knee or a hand being ice cold and turning purple. But that is what happens with Complex Regional Pain Syndrome or CRPS (Type I), previously known as Reflex Sympathetic Dystrophy. The disorder effects at least one in 100,000 Americans, but due to miss-diagnosis and poor awareness of the disorder, it is possible that the disorder affects many more (Moskowitz and Lang, 2003). The syndrome is characterized by burning pain, which is considered to be disproportionate to the initial injury. And although CRPS is considered a rare disorder, it is possible that up to 20% of Americans have some form of chronic pain. Because chronic pain affects so many people, it is important to understand CRPS and chronic pain in general. CRPS will be explained through the use of scientific and clinical data and hypotheses, and the language of chronic pain will be explored to more fully understand both the scientific and societal influences and implication for people with CRPS.

CRPS has many officially recognized symptoms and some symptoms that are not recognized officially, but that many CRPS patients describe. The symptom that all physicians who treat this condition recognize though is intense burning pain. Patients frequently experience color changes, excessive swelling (edema), and changes in hair and nail growth of the affected limb. Patients complain of struggling with movement of the effected limb, excessive sweating and muscle spasms. Researchers have found movement disorders and "neglect like" symptoms, in which the limb with CRPS feels foreign to the patient (Galer and Jensen, 1999). These symptoms are generally used to diagnose CRPS, but again, the largest symptom is pain "disproportionate to the inciting trauma".

Despite these objective signs and symptoms, there is no test or lab work which signifies that a patient has CRPS. Doctors generally use their own clinical experience to diagnose CRPS, but often use certain procedures to aid in diagnosis. These procedures include infra-red thermograph to measure the temperature of the affected limb as compared to the unaffected limb, special infusions of a chemical to block sympathetic nerve impulses, and sympathetic nerve blocks, which also serve as a treatment for some patients and will be described later (Harden, 2005).

To fully understand CRPS, it is important to understand pain as it is the most definitive symptom of CRPS. According to the International Association of the Study of Pain, pain is "An unpleasant sensory or emotional experience which we primarily associate with tissue damage or describe in terms of damage, or both" (QTD in. Moskowitz and Lang, 29). For example, the sensation of a burn to the hand after touching a stove is considered pain because it is both unpleasant and is associated with damage to tissue like skin. A commonly understood explanation of acute pain is that pain helps the body protect itself. For example, pain causes a person to remove a hand from a hot stove or avoid walking on a broken leg. The nerve fibers sense the damage and the information passes through the dorsal horn of the spinal column. The brain receives the information, and reacts. There are many possible responses to pain, depending upon the injury. An inflammatory response is likely in the case of an injury. It is thought that an exaggerated inflammatory response may play a role in CRPS.

An inflammatory response is caused by the sympathetic nervous system, and is one reason for the previous, but still common understanding of CRPS as an over-firing of the sympathetic nervous system. The sympathetic nervous system is commonly referred to as the "fight or flight" nervous system. It is involved in controlling more automatic processes in the body such as circulation, breathing and digestion. It reacts in response to stressful situations, of which pain is certainly one. The sympathetic nervous system, having received the impulse warning of pain causes swelling to protect the injured area (Moskowitz and Lang, 21-22).

Although there is not currently a widely accepted laboratory test that can objectively identify CRPS, that day may be coming soon. Scientists have found several biological markers that are present in CRPS. Researchers have found DNA changes in the cells of the spinal cords of CRPS patients (Juris, 11). There is also evidence that a portion of the brain shrinks when the CRPS patient is experiencing significant pain, however that change appears to be reversible (Galer, 2006 P 4).

It is precisely these biological and neurological changes that distinguish CRPS from other chronic pain conditions. Additionally, a condition like back pain remains local and does not usually spread. There may be nerve damage, but the changes are generally limited to the site of original injury, although they can cause pain radiating into a limb. CRPS shows changes in the entire nervous system, such as those associated with a sympathetic response. Research also shows a loss of small nerve fibers in skin biopsies from the affected limbs of CRPS patients (Groopman, 2005.)

Because of the response of the nervous system in CRPS, many doctors felt that CRPS was necessarily degenerative. They believed that CRPS had three or four stages, and that all patients progressed linearly through those stages. The first stage is acute CRPS, stage two is the dystrophic stage, stage three is the atrophic stage and stage four involves the inner organs and treatment with implanted devices is strongly considered (RSD Hope, 2007).

The hypothesis of stages, as with many hypotheses in CRPS, has not been shown to be effective clinically. This hypothesis was created when Complex Regional Pain Syndrome type I was called Reflex Sympathetic Dystrophy.

Doctors commonly find with CRPS that the condition responds very differently between patients who would normally be considered similar in other health classifications. Because of these differences in response to therapies, doctors treat CRPS with numerous medications, procedures and therapies. The Reflex Sympathetic Dystrophy Syndrome Association publishes treatment guidelines which suggest pharmacological management, physical and occupational therapy, psychological interventions and other complementary therapies. The focus of these guidelines is decreasing pain and increasing function (Harden, 2006).

Pharmaceutical interventions are not curative, but do help many patients to recover function. Pain is relieved through analgesics and adjuvant analgesics, meaning medications that are not always used to treat pain. Patients first try to treat their pain with over-the-counter pain medications such as Acetaminophen (Tylenol) or anti-inflammatory such as Ibuprofen. Anti-inflammatory medications relieve pain, but also relieve swelling. While these medications can be enough to control the pain for some patients, not all patients receive enough relief from these medications. Doctors generally try to choose medications that will relieve as much of the pain as possible, and aid a patient in functioning more effectively with the least amount of side effects. For example, a tricyclic antidepressant treats nerve pain by increasing Serotonin and Nor epinephrine, but also cause drowsiness and can be helpful for a patient who struggles to sleep because of the pain. An anti-seizure medication like Gabapenten (Neurontin) or Pregabalin (Lyrica) can calm nerve pain, and aid in reducing allodynia or sensitivity to touch and other stimuli which would not normally be painful. Some patients also find relief with a lidocaine patch. Lidocaine is a local anesthetic, which decreases nerve activity and can produce relief.

However, relieving inflammation, calming excited nerves, relieving depression and insomnia, sleeplessness are not always enough to relieve pain enough to help the patient function. Doctors sometimes need to add an opioid pain reliever such as Vicodin or Oxicontin. In this case, doctors try to find a medication which will help the patient's pain, but also avoid side effects such as drowsiness and constipation. When treating a patient with opioids, doctors also must avoid addiction to the medication, although this is generally considered a rare problem when opioids are used to treat pain. Some doctors use contracts which outline patient's and physician's responsibilities (Harden, 2005).

Another tool physicians commonly use is a nerve block. In essence, a nerve block involves injecting medication, usually a local anesthetic, to block nerve transmissions. The most common nerve block used for both the diagnosis and treatment of sympathetically mediated, originating from the sympathetic nervous system, pain in CRPS is a sympathetic nerve block. This is usually done in the neck or in the lumbar spine. The sympathetic nervous system lies on the sides of the spine, so the physician guides a long needle near the spine to block sympathetic activity. A patient can confirm that she or he has received a sympathetic block by the increase in temperature which occurs after the block. This is because the veins dilate and allow more blood to the extremities (Harden, 2005). Though these blocks seem to be less common, I have personally received an ankle block, named because it blocks nerves in the ankle which stops sensation and pain in the foot and an epidural injection which numbs the lower half of the body. There are very few studies on the efficacy of these two injections.

One new treatment which holds significant promise is the ketamine infusion. Ketamine is an anesthetic which blocks chemicals which excite the nervous system. While studies are limited, this particular medication has assisted 85% of patients at one treatment center in becoming more active or reducing their daily medications (Getson, 2005).

Although in depth description of these treatments is beyond the scope of this paper, it is important to know that psychological therapies such as biofeedback, relaxation and coping skills are often used with CRPS patients. Physicians also prescribe physical therapy to aid the patient in strengthening and desensitizing the limb (Harden, 2005).

After understanding the scientific aspects of CRPS, it is important to understand both the societal and literary concepts that affect CRPS and the patients and care givers who experience it. Unfortunately, there is very little popular literature about CRPS. Chronic pain is discussed generally, but CRPS is rarely mentioned, and even more rarely explored in depth.

In the Civil War, one doctor gained experience with CRPS firsthand. S. Weir Mitchell noticed that some of his patients experienced pain long after their wounds and surgical sites had healed. He referred to this nerve pain as "causalgia", which is now considered CRPS type II, which only differs clinically in that it has a definable major nerve injury. Mitchell described the pain of CRPS in Injuries of Nerves and Their Consequences, which is commonly cited in patient information available today. Mitchell described the responses of the soldiers he treated in this way: "Under such torments the temper changes, the most amiable grow irritable, the soldier becomes a coward and the strongest man is scarcely less nervous than the most hysterical girl" (Mitchell, 1872, P 196). While Mitchell's quote demonstrates the sexism of the day, in that crying and screaming are attributed to a "girl", it does demonstrate some compassion for patients with the disorder. It was also the first known discussion of the syndrome.

Mitchell's observations also described the pain as having some sort of pathology, and being directly affected by nerves. This is an important acknowledgement, since society still miss-understands this condition as arising from a psychological disorder (Gayler, 2006. Mitchell, 1872.) As explained earlier, some of this miss-understanding arises from the unique differences between CRPS and other painful conditions, and some is likely due to the co-morbidity of depression and CRPS (Gayler, 2006).

One common miss-conception about people with CRPS is that all CRPS patients are trying to avoid pain too much. As an unpleasant sensation, pain is something most humans try to avoid at some point, which is the reason for pain. The example of jerking a hand away from a hot stove shows the benefit of this. By jerking a hand away, a person avoids a terrible burn. Doctors who see many people complain of simple sprains may become skeptical of a CRPS patient who legitimately needs relief. Friends and family may believe that the person with CRPS is trying too hard to avoid pain or malingering, when in reality, a CRPS patient experiences much more pain than someone with a simple sprain.

Another common view of people with CRPS is that they suffer from psycho-somatic illness. Unfortunately, that view is widespread.

"One common complaint from patients is that their family members do not really believe they are ill and do not understand their pain. In fact, there was a time when many doctors thought RSDS existed only in the patient's head. When a disease is difficult to understand and doctors cannot find a way to treat its symptoms, they often conclude it is a psychosomatic disorder. Physicians are trained to treat illnesses and help their patients. When nothing they do works, they often resort to a psychological diagnosis rather than admit defeat. If doctors have trouble believing their patients' accounts of the pain they experience, it is no wonder that family and friends have the same problem" (Moskowitz and Lang, 2003 P. 124).

As shown in this passage, patients are not only harmed by this attitude from their families and friends, but also their doctors. This can delay treatment and cause the loss of a job or friends. In extreme cases, it can lead to suicide if the patient believes no one will help manage their pain or put together the pieces of the patient's life. The stigma of psychological conditions is a large problem for CRPS patients. Instead of believing that psychological pain is real pain, society tends to use depression or anxiety as reasons to ignore a person's pain. The link between chronic pain and depression is strong. In many cases, friends and family see depression that is caused by chronic pain and assume it is what caused the pain in the first place. The slogan for a commercial for Cymbalta is "Depression hurts." The drug was actually designed to aid in treatment of depression or nerve pain, but the commercial creates the image of depression "causing" pain. While there is a link, it is not nearly what the commercial suggests.

MacDonald (2000) describes current social work practices in chronic pain treatment programs. She explains that pain is defined in three different "cells" in a behaviorist or contingency management model. The first cell describes pain as a "sick role" that is "reinforced" by the patient's environment. The pain may be "real", but it is "psychological" in nature. Usually, patients' lives are analyzed to see if there is some kind of gain for the patient to be sick. A gain might be sympathy, reduced or no work, or any other stimulus or cue perceived as a reward. The treatment is to ignore the patient's "pain behaviors", such as limping, wincing, saying "ouch" or other indications that the patient is in pain. Then, the therapy team reinforces "well" behavior. It is thought that this will restore health to the patient (MacDonald, 2000 P. 52).

Another cell of the contingency management model assumes that pain is biological in nature. This means that pain has pathology, a sprain or strain shows the pathology of stretched ligaments. This might also include pain conditions that currently cannot be detected on x-ray or MRI, since what can be detected medically now is very different from what could be detected twenty years ago, it is possible that pain that seems to have no cause now will be discovered to have a cause in the future. This would be the more scientific explanation of pain. MacDonald explains that "Chronic cancer pain and neurological pain have been traditionally classified in this category, because there is obvious and observable organic damage to explain the pain. The symptomatology specifically fits with the signs of scientifically classified disease processes and therefore is deemed a legitimate concern that elicits medical intervention" (MacDonald, 2000, P. 52). Patients with CRPS sometimes find themselves confused by cell one and cell two, and find it difficult to explain the causation of their pain. I have been told that stress effects my symptoms, and this sometimes leads me to feel that my pain is not legitimate.

MacDonald explains that to meet the needs of a chronic pain patient, it is best to treat the physical pain and provide psychological support to deal with the implications of chronic pain on the life of the "sufferer" (MacDonald, 2000, P. 53). Moskowitz and Lang (2003) explain that treatment for CRPS "consists of three parts. The first is the control of pain by medication and other techniques; the second is psychosocial support and treatment; and the third is functional activation and rehabilitation" (69). This reality is difficult to accept, however, because of the stigma around chronic pain and mental illness. These miss-conceptions must be resolved within the patient, so that healing can take place. A more realistic understanding of the relationship between pain, depression and CRPS could help the patient resolve these challenges.

A common metaphor for bodily processes such as the immune system and medical treatment in general is the metaphor of war. This metaphor has been extended to pain medicine and research. A respected and empathetic pain physician, Scott Fishman, wrote The War on Pain, in which he recounted his experience treating diverse people and their pain. His book also explains quite a bit about various conditions, medications and complementary treatments. He specifically invokes a war metaphor in many of his descriptions. The war metaphor for pain does have some benefits. When pain is so intense that it causes shock, or creates difficulty in day to day life, "fighting" the pain is important. In the forward to Fishman's The War On Pain, Thomas Moore writes "Pacifist that I am, seeped in the unbelligerent imagery of Taoism, I admit that I worry some about his root metaphor of conducting a war on pain" (2). Besides the desire to avoid war, and promote peace, the war metaphor may promote a feeling of futility. With a condition like CRPS, there is often a feeling of failure or losing. This is problematic, not just for people with pain, cancer or AIDS, but also for people with CRPS.

Scientists describe the sympathetic nervous system as the "fight or flight" nervous system. This imagery does make sense from an evolutionary perspective, in which pain is a form of "attack" and one must either fight or leave to survive. The simplistic explanation of CRPS and the one explained most frequently to newly diagnosed patients or simply interested people used to be that the sympathetic nervous system was "overactive" and the "fight or flight" response caused most, if not all, of the pain. This is very similar to the previous descriptions of the immune system "fighting" any invading pathogens. This language is damaging to a patient, who is often told to "fight" a disease. Moskowitz and Lang (2003) explain that an attitude of "I did not ask for this, but I will fight it tooth and nail," [is] harmful and [needs] to be handled with a mental health professional. [A patient] may unconsciously sabotage all … efforts to deal with the illness. At the very least, [this] reaction will make... efforts to live as well as [possible] less effective. It is important to accept that some things just happen" (108-109). War as a metaphor for treatment of CRPS is counter-productive. Further, because of the feeling of futility that war and battle metaphors create, the patient may attempt to fight harder, and increase both the activity of the sympathetic nervous system and the pain.

Fishman does, however, acknowledge that the war should have limits. "We should never surrender to pain, but neither should we become to entrenched in combat to negotiate a truce. If you've been battling chronic pain, you may be locked in a struggle that's consumed months or years. Life is just too short to remain in a war zone any longer than absolutely necessary" (Fishman, 2005). While declaring a truce is a more helpful image, it still does not encompass all of the experience of a CRPS patient. It sets the patient up for feeling like a failure. Even as I have realized that having CRPS is not my fault and I have not lost the battle, many others feel that I am "not fighting it hard enough". The war metaphor is so prevalent in society that avoiding the "fight or flight" response is nearly impossible.

One of the concepts that complicates society's understanding and doctors' treatment of pain is the concept of pain as an alarm. Many physicians and physical therapists are quick to point out that pain prevents many serious injuries. A person who walks long distances in shoes that do not fit correctly will receive blisters. The pain caused by the blister causes the person to walk less the next day or find shoes that fit and do not cause pain in that spot. In many ways, pain is an alarm. A fire alarm prevents injury by warning that fire, or at least smoke, is in the building. Pain does much the same thing. It is, of course, hard to remember that pain has positive aspects while experiencing severe pain. Many people with even a twisted ankle ask the doctor to relieve or completely remove their pain. In my experience, many doctors are extremely hesitant to do this. When my injury that precipitated the CRPS happened, my doctor encouraged me to let pain be my guide to avoid further injury. My doctor said the same thing after both of my surgeries. Acute pain can literally mean the difference between a small blister and a third degree burn.

Because of the alarm metaphor of pain, many people view pain as a gift. Dr. Paul Brand spent his life working with leprosy patients. He wrote of the struggle many patients experience because they cannot feel. Leprosy can cause a deadening of the nerves. Until relatively recently, doctors thought the condition caused fingers to drop off or shorten. Brand observed that patients actually had injuries that they could not feel. Without pain, they could not easily prevent the injury, or monitor its healing. In THE Gift of Pain, he describes how many of the sores, infections, ulcers and shortenings of bones that were once thought to be caused by the disease of leprosy itself are actually caused by injuries which are not prevented by pain. An ulcer could start from a simple painful blister, which would warn a person with a typical amount of sensation and, without thinking about what was taking place in the body; she or he would shift weight, change shoes or take a break. Brand described blisters or even tiny spots of inflammation which created ulcers, and because the patient with leprosy could not feel any pain from the ulcer, the patient never rested or shifted weight. The ulcer never healed and the foot or hand needed to be amputated. "For the first time I noticed something. [The patient] had no limp! I had just spent half an hour cleaning out a grossly abscessed wound on the ball of his foot, and he was putting his full weight on the exact spot we had so carefully treated" (Brand 120). Certainly, this is a valid reason to appreciate pain. Pain aids in preventing and healing injuries. My personal experience has generally shown two responses to this. Some sincerely want to never experience pain. They do not feel satisfied if a doctor does not completely eradicate their pain. Others see pain as a gift and cannot understand why others need relief. This second general group tends to be the group of people who do not believe that CRPS exists, or they create causation of the pain and thus, the condition.

Brand wrote of a woman whom experienced CRPS in such a light. Her CRPS developed after an operation which required her to keep her arm in an uncomfortable position for three weeks. By the time she visited Brand, the woman was incredibly angry with her original surgeon who had ignored her pain. She had an advanced case of CRPS. Though the chapter in which Brand describes her case is entitled "Intensifiers of Pain," he also states causation "I concluded the woman had lost use of her hand because of anger and distress. I could find no other physiological cause" (Brand, 268). Certainly, anger does increase sympathetic nervous system activity; however, it has already been shown that CRPS is not always sympathetically maintained. This implied causation is harmful to any patient, with any condition. Like the war metaphor, it places the burden mostly on the patient. While a patient must take responsibility for his or her own recovery, these metaphors do not usually point out beneficial areas of responsibility, rather, they waste the patient's time, chasing after problems and societal ideologies that rarely benefit in the long run.

Since there are so many unhelpful metaphors that do not fully or accurately describe the experience of a person with pain, it is important to examine both the metaphors used by and the lived experiences of people with pain. One reason pain is so poorly understood by society, besides the obvious biological complexities of pain is that people with pain struggle to explain their own narratives. "Narrative conventions call for coherence; stories should integrate life experiences and create a whole. For chronic pain sufferers that seems to be a challenging task, for if pain continuously destroys or threatens the self and the world then every narrative of the self in pain remains fragile" (Becker, 1999). This passage appeared in an article discussing pain in later life. It portrays the challenge of describing the experience of pain and its effect on the person. Indeed, I have personally experienced the fragileness of my own sense of self. Writing this paper, and portraying my experiences and those 'of others with pain has been one of the most challenging writing projects I have ever participated in. Indeed, my experience of writing about or talking about CRPS and living with pain has felt fractured and fragile. Others also embody this fragility and sense of a fractured narrative. As Brand described her, the woman he operated on whom CRPS had told her story in such a way that he struggled to understand what had happened to cause her pain (Brand 268). For this woman, pain stole her sense of self. She could not release her anger because her pain remained unrelieved.

Pain not only destroys the sense of self and the ability to construct a narrative, by its nature, it prevents a narrative from being formed. In "Pain: The Disease," Elaine Scarry explained "pain is not a linguistic experience; it returns us to the world of cries and whispers. Patients grope at far-fetched metaphors” (Thernstrom, 2001). Concrete descriptions of pain are challenging, because many times, a patient does not actually know what pathology is causing the pain. Even when a condition like CRPS is diagnosed, few people have experienced or identified this type of pain. A vivid description such as "it feels like my leg is on fire", is an experience few people are unfortunate enough to have. Most CRPS patients have probably not experienced the concrete version of the metaphor.

Fortunately, there are metaphors that can be easily understood and pictured by others. They may not always describe the pain itself, but they can portray the experience of living with pain. "Chronic pain is like water damage to a house—if it goes on long enough, the house collapses. By the time most patients make their way to a pain clinic, it's very late," Dr. Daniel Carr, director of the pain clinic at the New England Medical Center explained (Qtd. in Thernstrom, 2001). This metaphor describes the experience of a person with chronic pain, its effect on a person's life, without placing burden only on the shoulders of the patient. It avoids the guilt that is so often present in descriptions of pain. Water damage to a house usually invokes compassion. No one would say "if you only tried harder, you would not have had that flood last year."

It is important to remember that describing pain has implications beyond explaining CRPS to friends, family and strangers who cannot understand why a young woman or man is using a cane, wheelchair or walker, or why a patient is wearing gloves on a hot but windy day. It is also important that doctors be able to understand the quality and quantity of a patient’s pain to either diagnose a patient's condition or track the progress of treatment. Fortunately, doctors can choose among several methods to evaluate pain. One such method, the McGill Pain Index relies on the language of pain and indirectly relies upon some of the metaphors described above. The index uses a questionnaire in which patients describe their pain's qualities by choosing words from various groups. The groups allow physicians to see a pattern in the type of pain that is described. "Pain is scaled in four categories: sensory, affective, evaluative, and miscellaneous. Affective words would include `exhausting,` `frightful,` `vicious,` and `torturing.` Sensory words would include `throbbing,` `aching,` `dull,` `stabbing,` and `piercing.` Evaluative words would include `mild,` `excruciating,` and `agonizing" (Moskowitz and Lang, 55). These groupings can create helpful dialogue about the pain, and even with a patient who has seen a particular physician for years, the groupings can provide information about which treatments might still be needed. Certainly, they give a patient a general idea of where to start to describe the pain. I personally found that this questionnaire helped me to know how to talk with family members and friends.

The authors of the scale also created a chart to demonstrate the intensities of various pain conditions. Causalgia, the name used with CRPS Type II ranks at the top of the scale. To help the general public and doctors who are unfamiliar with the conditions described, the authors compared the pain conditions to child birth and accidents. CRPS ranked above forty on the scale, which is comparable only to amputation of a finger (Juris, 149).

One other method of describing the quantity of pain is using the ten point scale. A patient is asked to rate the pain on a scale of zero to ten, where zero is no pain and ten is the worst possible pain. The idea is that this gives the patient a good way to tell the physician how much pain she or he is in. In reality, a ten point scale cannot possibly convey pain fully. I experience many types of sixes on the pain scale. I also find that my concept of the scale changes. What I thought of as an eight one year ago, I would now view as a four. This does give my doctor and I somewhere to start, however. With practice, I have learned to translate the language of pain in words such as "ouch" or "it hurts" to more descriptive phrases like "I am at a nine on the pain scale. This thunder storm is making my pain increase. Mostly, it is burning, but there is some electrical shock like pain and quite a bit of aching." This new language, combined with the more helpful metaphors and thought about narrative can help to create a better meaning for the pain of CRPS.

While CRPS can be both physically and emotionally devastating to a patient, and can indeed feel like "hell", war or a collapsing house, scientists and physicians are making progress. Patients can, in many cases, retain and regain function. Metaphors and narratives can adjust to promote healing. A CRPS sufferer can regain a sense of self and the house of her life can be rebuilt.


Works Cited

Fishman, Scott, and Lisa Berger. The War on Pain. Harper Paperbacks, 2001.

"Four Stages of RSDS." American RSD Hope. 2007. 10 May 2007 <http://www.rsdhope.org/showpage.asp?page_id=5>.

Galer, Bradley S. "Complex Regional Pain Syndrome:." RSDSA. 2006. 5 May 2007 <http://www.rsds.org/3/education/galer_2006.htm>.

Getson, Philip. "Overview of Ketamine Infusion Therapy." RSDSA. 2007. 13 May 2007 <http://www.rsdsa.org/3/treatment/ketamine.html>.

Groopman, Jerome. "When Pain Remains." The New Yorker 10 Oct. 2005: 36-41. Academic Search Premier. Ebsco. College of St. Catherine, St. Paul.

Harden, Norman. "Complex Regional Pain Syndrome: Treatment Guidelines." RSDSA. 2005. 5 May 2007 <http://www.rsdsa.org/3/clinical_guidelines/index.html>.

Juris, Elena, and Edward Carden. Positive Options for Reflex Sympathetic Dystrophy. Alameda: Hunter House, 2005.

Moskowitz, Peter, and Linda Lang. Living with RSDS. Oakland: New Harbinger Publications, Inc., 2003.

Thernstrom, Melanie. "Pain: the Disease." New York Times 16 Dec. 2001. 6 May 2007 <http://query.nytimes.com/gst/fullpage.html?sec=health&res=9c02e4dd163ff935a25751c1a9679c8b63>.

Yancey, Philip, and Paul Brand. The Gift of Pain. Grand Rapids: Zondervan, 1997.

Comments

( 9 shots of espresso — Add a shot of espresso )
capricorn_sistr
May. 17th, 2007 08:15 pm (UTC)
Great Paper - A+
the ten point scale.

When I told one of my nurses that my pain was a "14" - she just stood there :::blink, blink::: She wasn't at all familiar with an RSD patient. I said I was feeling 'half past dead' and she finally got it. The shot of Dilaudid soon followed.

puppybraille
May. 26th, 2007 12:11 am (UTC)
Re: Great Paper - A+
That is an excellent description, and I think I can relate. I am glad you liked the paper.
ext_5829
May. 21st, 2007 06:22 pm (UTC)
the language of pain
thank you so much for this important contribution to exploring the hell of CRPS. it's interesting to see that the mcgill questionnaire is still valuable. robert melzack, who is one of the main people who worked on this, is one of my heroes :)

i was particularly intrigued by your precise description "I am at a nine on the pain scale. This thunder storm is making my pain increase. Mostly, it is burning, but there is some electrical shock like pain and quite a bit of aching." there is a feeling of ... dignity in that description.
puppybraille
May. 26th, 2007 12:14 am (UTC)
Re: the language of pain
Thank you for your comment. I think that dignity is challenging to keep when dealing with really high pain levels. Which is where I think language starts to fail us.
mr_vangunst
May. 25th, 2007 12:20 am (UTC)
RSD PAPER
Hoo-rah! thats alot of ink. do you know what you got on it?
puppybraille
May. 26th, 2007 12:15 am (UTC)
Re: RSD PAPER
I'm not sure what I got on the paper, it looked like an 85 out of 90, but I have trouble reading my scores on blackboard, even though it's online.
(Anonymous)
Jan. 24th, 2008 06:16 pm (UTC)
I understand that! I don't know what to do wiht that horrible back pain! There is no useful cure for it!
http://www.alleviatebackpain.net/back-pain-cure
(Anonymous)
Dec. 2nd, 2008 11:36 pm (UTC)
Fantastic work
My wife has suffered for the past 3 years after carpul tunnel release. I have read many docs on CRPS but yours is remarkable. Reding this I can understand more than ever before what she is going through.
I love my wife dearly, your story put a lump in my throat when recognising majority of people do not believe. It is sad that some family members have this same opinion. Why is it the people closest can be so ignorant about this condition? I have sent a link to this story to all of my family. Hopefully they will read your story & finnally understand & give my wife the praise & recognition she deserves for being a increadibly strong, enduring person.
I never doubted my wifes description of the pain & do whatever I can to help her cope.
I wish you & all sufferers all of my best & hope that some day CRPS can be cured.
(Anonymous)
Jul. 22nd, 2009 07:47 pm (UTC)
Thank You
Thank you so much for sharing your essay. I've had CRPS for two years now and everything you've said I completely understand. It was the title of your paper that actually caught my eye; I have often said (much to my very-religious mother's chagrin) that I am no longer afraid of dying, because I am already in hell. I feel like your handling of the disease is similar to my own; this is a condition that can leave you feeling completely disempowered and permanently victimized. For me, the best way I have found to regain a semblance of control over my pain is to learn as much as I can about the condition; if I can at least understand what is happening to me, it makes me feel less like a passive victim. I have had to drop out of college because of the condition, but before I did I was actually planning on completing my senior thesis in a manner similar to your paper: comparing the medical, socio-linguistic, and artistic/literary ways in which pain conditions like CRPS can be comprehended and understood. (I was an Anthropology and English major). Hopefully, I will be able to return eventually. I get the sense from reading your paper that you and I handle the disease in similar ways. Again, I just wanted to thank you for sharing. It is always helpful to know that you're not alone!
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