HYPERACUASIS

  What is Hyperacusis?

Imagine being at a movie where the sound track is turned to the highest volume. Actors' voices are screaming at you. After five minutes, you leave holding your ears and cursing the theater for its poor judgment. Turning newspaper pages, running water in the kitchen sink, your child placing dishes and silverware on the table - all are intolerable to your ears. A baby cries or a truck screeches its brakes to a halt and the sound is excruciating. What has happened to my ears?
The person who has hyperacusis can't simply get up and walk away from noise. Instead, the volume on the whole world seems stuck on high. Hyperacusis is defined as a collapsed tolerance to normal environmental sounds. Ears also lose most of their dynamic range.  What is dynamic range?
Dynamic range is the ability of the ear to deal with quick shifts in sound loudness. Suddenly everyday noises sound unbearably or painfully loud. The disorder is often chronic and usually accompanied by tinnitus (ringing in the ears), but can occur in patients who have little or no measurable hearing loss.
Hyperacusis differs from recruitment, which is an abnormal growth in the perception of loudness accompanied with hearing loss. With recruitment, loud noises are uncomfortable. With hyperacusis, all sounds are too loud.
Most patients also experience inner ear pain or a feeling of fullness (pressure) in the ears.  This pressure in the ears can best be described as the feeling one normally gets when descending in an airplane.  Hyperacusis can be devastating to the patient's career, relationships, and peace of mind. Finding the proper diagnosis is difficult because few doctors understand hyperacusis.
A LIFE ALTERING CONDITION
Hyperacusis makes living in this noisy world difficult and dramatically changes the patient's pattern of life. Moving about, traveling, and communicating with others is challenging. Ear protection must be worn in areas that seem too loud. This includes earplugs, industrial earmuffs or both if necessary.
Even then, many vocational and recreational activities must be curtailed or eliminated because, although protection reduces the noise entering the ears, it sometimes seems insufficient to block out certain frequencies or noise intensities. The things most of us take for granted, such as driving a car, walking down the street, riding a bicycle, listening to the TV, stereo, someone speaking over a telephone or microphone, shopping, attending indoor events, dining at restaurants, taking vacations, or participating in group activities often are difficult or impossible. Many have difficulty using a vacuum cleaner, a hammer, a lawn mower, power tools, ride a motor boat or motorcycle.
Most jobs involve some level of noise. In some cases, the patient may need to seek other employment or attempt to secure disability with the help of an understanding doctor. Loud noise exposure generally makes the condition worse and exacerbates the accompanying tinnitus. Patients report they perceive sound - even their own voice - as uncomfortably loud and this not only causes tinnitus to increase but may also cause inner ear discomfort or a popping reflex in the ear.  In fact some patients actually try to change the pitch of their own voice to accomodate their ears.  This may help their ears but a patient can become hoarse in the process.
In cases not involving aural trauma to the inner ear, hyperacusis can also be acquired as a result of damage to the brain or the neurological system. In these cases, hyperacusis can be defined as a cerebral processing problem specific to how the brain perceives sound. In rare cases, hyperacusis may be caused by a vestibular disorder. This type of hyperacusis, called vestibular hyperacusis, is caused by the brain perceiving certain sounds as motion input as well as auditory input.  In some cases, vestibular hyperacusis can affect the autonomic system and cause problems such as loss of consciousness, mental confusion, nausea, or extreme fatigue.

For more information visit this link:
 http://www.hyperacusis.net/hyperacusis/home/default.asp

SIGNS AND SYMPTOMS, HOW BAD IT CAN GET...

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Severely infected and swollen foot gram negative infection with greenish pigment. A pseudomonas infection. Stage III of RSD.

RSD SIGNS AND SYMPTOMS: HOW BAD CAN IT GET?? I MEAN REALLY/ PART II

Anchoring fibril deficiency. The patient sheds all of the skin from her arms and upper body. Stage III of RSD

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Blisters and livedo reticularis in Stage III of RSD

Atrophic skin of stage III patient Combination of loss of hair and increased thickness of hair

Demonstrates brawny edema Reddened thickened skin Increased nail growth of the great toe Deep ulcerated lesion on the top of the foot. Stage I of RSD

Anchoring fibril deficiency. The patient sheds all of the skin from her arms and upper body. Stage III of RSD

Example of deep ulcer stage III.

Commonly seen small punctate skin lesions that will ulcerate Stage III of RSD

Very severe bilateral RSD stage II Severe brawny edema, ulcerations, thickened curly hair

Severely infected and swollen foot gram negative infection with greenish pigment. A pseudomonas infection. Stage III of RSD

SIGNS AND SYMPTOMS OF RSD./CRPS; diagnosis and how bad it can get-Part I

Diagnosis

If one can demonstrate major nerve damage associated with the development of RSD / CRPS symptoms, the condition is called complex regional pain syndrome (CRPS) type II or causalgia. Generally, causalgia provides more objective evidence of disease due to neurological changes (numbness and weakness).

The terms complex regional pain syndrome (CRPS) type I and type II have been used since 1995, when the International Association for the Study of Pain (IASP) felt the respective names reflex sympathetic dystrophy and causalgia were inadequate to represent the full spectrum of signs and symptoms. The term "Complex" was added to convey the reality that RSD and causalgia express varied signs and symptoms. Many publications, particularly older ones, still use the names RSD and causalgia. To facilitate communication and understanding the designation RSD / CRPS is generally used throughout these practice guidelines. The principles applicable to the diagnosis and management of RSD are similar to those principles applicable to the diagnosis and management of causalgia.

To make the early diagnosis of RSD / CRPS, the practitioner must recognize that some features/manifestations of RSD / CRPS are more characteristic of the syndrome than others, and that the clinical diagnosis is established by piecing each bit of the puzzle together until a clear picture of the disorder emerges. Often the physician needs to rule out other potentially life-threatening disorders that may have clinical features similar to RSD / CRPS, e.g. a blood clot in a leg vein or a breast tumor spreading to lymph glands can cause a swollen, painful extremity. Indeed, RSD / CRPS may be a component part of another disease, (e.g. a herniated disc of the spine, carpal tunnel syndrome of the hand, heart attack). Thus, treating RSD / CRPS will often be directed to treating clinical features rather than a well defined disease. When RSD / CRPS spreads the diagnosis can be more complicated. For example, if it spreads to the opposite limb, it may be more difficult to establish a diagnosis because there is no normal side (control) to compare for objective findings. On the other hand, the spreading of RSD / CRPS symptoms may actually facilitate the diagnosis of RSD / CRPS because spreading symptoms is a characteristic of the disorder. (See below).

Importance of Objective Findings

Many patients who develop RSD / CRPS as the result of an injury do so in the context of legal liability. Some patients can be expected to defend their rights in courts of law. It is not uncommon for the defendant to accuse the patient of faking their condition, especially if there are no objective findings for RSD / CRPS documented on the medical record. Therefore, the evaluating physician must assess more than just subjective complaints (medical history). The physician must aggressively seek and document objective findings. For example, about 80% of RSD / CRPS cases have differences in temperature in opposite sides that may be either colder or warmer. These temperature changes may be associated with changes in skin color. Furthermore, the temperature differences are not static. The skin temperature can undergo dynamic changes in a relatively short period of time (within minutes) depending critically on room temperature, local temperature of the skin and emotional stress. In some cases, the differences in temperatures may fluctuate spontaneously even without any apparent provocation. ⁴ Thus, the objective finding of differences in temperature and color of the skin can be missed by the physician if only a single physical examination is made. A useful and relatively inexpensive instrument to have available at the time of the physical examination is a portable infrared thermometer to measure differences in skin temperature. Changes in skin temperature and color are only two examples of several objective findings that should be sought in the patients with RSD / CRPS.

Making the Diagnosis of RSD / CRPS

The diagnosis of RSD / CRPS can be made in the following context. A history of trauma to the affected area associated with pain that is disproportionate to the inciting event plus evidence at some time for one or more of the following:

• Abnormal function of the sympathetic nervous system, e.g., abnormal changes in skin blood flow, sweating or goose flesh.
• Swelling.
• Movement disorder.
• Changes in tissue growth (dystrophy and atrophy).

Thus patients do not have to meet all of the clinical manifestations listed above to make the diagnosis of RSD / CRPS. Note also that the criteria state "evidence at some time" for the clinical findings. This does not mean that the evidence for the clinical finding listed has to be constant. This explains why swelling, abnormal sweating, abnormal skin temperatures, etc., are not reported by the physician on some visits. Sometimes weather plays a factor or emotional stress or the patient may be in a flare-up or a remission stage. Patients have good and bad days.

 

The RSD / CRPS diagnosis is precluded by the existence of known pathology that can be explained by the observed symptoms and degree of pain. The pain and symptoms of RSD / CRPS may exceed both the magnitude and duration of symptoms expected from the normal healing process anticipated from the inciting event. There seems to be a small group of patients whose pain following trauma resolves over time, leaving the patient with more of a movement than a pain disorder.

 

Clinical Features of RSD / CRPS

1. Pain - The hallmark of RSD / CRPS is pain and mobility problems out of proportion to those expected from the initial injury. The first and primary complaint occurring in one or more extremities is described as severe, constant, burning and/or deep aching pain. All tactile stimulation of the skin (e.g. wearing clothing, a light breeze) may be perceived as painful (allodynia). Repetitive tactile stimulation (e.g. tapping on the skin) may cause increasing pain with each tap and when the repetitive stimulation stops, there may be a prolonged after-sensation of pain (hyperpathia). There may be diffuse tenderness or point-tender spots in the muscles of the affected region due to small muscle spasms called muscle trigger points (myofascial pain syndrome). There may be spontaneous sharp jabs of pain in the affected region that seem to come from nowhere (paroxysmal dysesthesias and lancinating pains).
   
   
2. Skin changes - skin may appear shiny (dystrophy-atrophy), dry or scaly. Hair may initially grow coarse and then thin. Nails in the affected extremity may be more brittle, grow faster and then slower. Faster growing nails is almost proof that the patient has RSD / CRPS. RSD / CRPS is associated with a variety of skin disorders including rashes, ulcers and pustules. ⁹ Although extremely rare, some patients have required amputation of an extremity due to life-threatening reoccurring infections of the skin. Abnormal sympathetic (vasomotor changes) activity may be associated with skin that is either warm or cold to touch. The patient may perceive sensations of warmth or coolness in the affected limb without even touching it (vasomotor changes). The skin may show increased sweating (sudomotor changes) or increased chilling of the skin with goose flesh (pilomotor changes). Changes in skin color can range from a white mottled appearance to a red or blue appearance. Changes in skin color (and pain) can be triggered by changes in the room temperature, especially cold environments. However, many of these changes occur without any apparent provocation. Patients describe their disease as though it had a mind of its own.
   
   
   
   Photo Gallery of Skin Lesions Associated with RSD / CRPS:   Dr. Robert J. Schwartzman, whose name is synonymous with RSD / CRPS, has contributed a photo gallery to the Clinical Practice Guidelines. His photos illustrate some of the objective findings that may be observed in patients with RSD / CRPS. It should be emphasized that patients with RSD / CRPS may not present with these objective findings, especially during the early stages of the disease.
   
   Dr. Schwartzman is Professor and Chairman of the Department of Neurology at Hahnemann School of Medicine in Philadelphia, PA, USA. He is a member the Scientific Advisory Committee. Through his numerous publications, lectures, and research efforts, he shares his clinical experience by making others aware of the effects of RSD / CRPS. Dr. Schwartzman has received several honors and awards, including the Mayo Clinic Neurology Teaching Award and the Dean's Special Award for Excellence in Teaching from Hahnemann University of Medicine in both 1998 and 1999

 RSD PHOTO GALLERY, PER RSD FOUNDATION:

Anchoring fibril deficiency. The patient sheds all of the skin from her arms and upper body. Stage III of RSD

Atrophic reddened skin. Shiny skin that later desquamated. Stage III of RSD

Atrophic skin of stage III patient Combination of loss of hair and increased thickness of hair

Demonstrates brawny edema Reddened thickened skin Increased nail growth of the great toe Deep ulcerated lesion on the top of the foot. Stage I of RSD

Example of atrophic skin with deep ulcer on the top of the right foot.  Atrophic skin, loss of hair on the affected, or unaffected limb

Example of Gardner-Diamond Syndrome

Commonly seen small punctate skin lesions that will ulcerate Stage III of RSD

Example of deep ulcer stage III.

Ligature signs, bilaterally below the knees Nothing had been placed on the legs  Stage III of RSD

Example of early lesions that become ulcerated in latter stages. Stage I of RSD-yeah, doesn't itch either

 How BAD CAN it really get???

See the next post.

 

WHAT ARE HER SYMPTOMS AND SIGNS

Paula, your actions haven't just affected PAULA.  CRPS, or RSD is a nightmare to live withm but when drones like you mucik up care for those of us who suffer with it:

I will show you a slide show of my most recent visit with my pain team...  The visit where I waaaas told that I had (personally and intentionally) "failed" conventional treatmentments." and that my "prognosis was very poor, if the Level System Were still used, I would be a Grade 4-since my RSD has gone full body-and let me show you the symptoms: see, we all can say "Horrible, nauseatingly painful jabs, etc that she has so perfectly (been coached?  Rehearsed?  It has been in some way studied, because ou fake it real well: and frankly I am sick of your shit-this has been my fun with CRPS: first subjected to intolerablle exam, kinda like this:

The Elizabeth Weiss Story Part I

The Elizabeth Weiss Story, Part II

Paula on Entertainment tonight

A webcam response to the Elizabeth Weiss video

My own video response took weeks to make--because since then?  This was what I got when trying to bring up a formerly good website on RSD with good and reliable information, and got this:

Reflex Sympathetic Dystrophy Syndrome

Topic Contents:

• Synonyms
• Disorder Subdivisions
• General Discussion
• Resources
• For a Complete Report

Reflex Sympathetic Dystrophy Syndrome Causes, Symptoms and Treatment and Related Disorders

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Important

It is possible that the main title of the report Reflex Sympathetic Dystrophy Syndrome is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

• Algodystrophy  (definition:  algodystrophy
  [al′gōdis′trəfē]
  a painful wasting of the muscles of the hands, often accompanied by tenderness and a loss of bone calcium. The condition may begin in the hand or in the shoulder and spread over the entire limb, causing contractures, edema, and cyanosis of the skin. It may also occur in the feet or legs. It may be associated with injury, heart disease, stroke, or a viral infection. Also called complex regional pain syndrome. See also reflex sympathetic dystrophy.
• Algoneurodystrophy- 

• Complex regional pain syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD)
  Classification and external resources
  ICD-10	M89.0, G56.4
  ICD-9	337.21, 337.22, 354.4, 355.71
  DiseasesDB	12635 16345
  eMedicine	pmr/123
  MeSH	D020918

  Complex regional pain syndrome (CRPS) is a chronic progressive disease characterized by severe pain, swelling and changes in the skin. There is no cure. The International Association for the Study of Pain has divided CRPS into two types based on the presence of nerve lesion following the injury.
  
• Type I, formerly known as reflex sympathetic dystrophy (RSD), Sudeck's atrophy, reflex neurovascular dystrophy (RND) or algoneurodystrophy, does not have demonstrable nerve lesions.
• Type II, formerly known as causalgia, has evidence of obvious nerve damage.

The cause of this syndrome is currently unknown. Precipitating factors include injury and surgery, although there are documented cases that have no demonstrable injury to the original site.

• Causalgia Syndrome (Major)
• Reflex Neurovascular Dystrophy
• RSDS
• Sudeck's Atrophy
• Complex Regional Pain Syndrome

• None

FROM rsdhope.ORG

 

 

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CRPS RSD OVERVIEW / DESCRIPTION

Reflex Sympathetic Dystrophy Syndrome, RSDS, is now referred to as Complex Regional Pain Syndrome, CRPS. CRPS is a progressive disease of the Autonomic Nervous System whose pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body.

CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index.

There are FOUR Main Symptoms/Criteria of CRPS:

1. Constant chronic burning pain (includes allodynia - extreme sensitivity to touch, sound, and vibration) 
2. Inflammation (this can affect the appearance of the skin, bruising, mottling, etc.) 
3. Spasms-in blood vessels and muscles of the extremities 
4. Insomnia/Emotional Disturbance (includes the major changes to the limbic system such as short-term memory problems, concentration difficulties, etc.)

There are a great many additional symptoms that can also occur over the course of the disease. Not all patients will have all symptoms and symptoms may change over time due to the stage the patient is in, the medications the patient is on, and/or the treatments the patient is receiving.


According to the IASP (International Association for the Study of Pain);

1. Know the common clinical characteristics of CRPS (Veldman et al. 1993; Birklein et all. 2000;
                  Baron and Wasner 2001; Wasner et al. 2003; Fördereuther et al. 2004).
       
     A. Know the common sensory signs and sensory signs and symptoms associated with CRPS;
                 1.Continuous burning pain in the distal part of the affected extremity.
                 2. Pain is disproportionate in intensity to the inciting (original) event and usually increases when the
                           extremity is in a dependent position.
                 3. Stimulus-evoked pains include mechanical and thermal allodynia and/or hyperalgesia, and deep
                           somatic allodynia (pain due to touching the joints and movement of joints).
   
     B. Know the common autonomic abnormalities associated with CRPS;
                 1) Swelling of the distal extremity especially in the acute phase
                 2) Hyper- or hypohidrosis (excessive sweating)
                 3) Vasodilatation or vasoconstriction
                 4) Changes in skin temperature

     C. Know the common trophic changes associated with CRPS:
                1) Abnormal nail growth
                2) Increased or decreased hair growth
                3) Fibrosis
                4) Thin, glossy skin
                5) Osteoporosis
 
     D) Know the common motor abnormalities associated with CRPS:
               1) Weakness
               2) Coordination deficits
               3) Tremor
               4) Dystonia
               5) Neglect-like symptoms or symptoms of disturbed body perception of the affected extremity

     E) Know that Sympathetically Maintained Pain (SMP) may occur in CRPS (Barron et al 1999; Ali et all
                2000; Baron et al 2002).  
               1) Be aware that thus pain component may be relieved through specific sympatholytic procedures (e.g.,
                sympathetic blocks).
               2) Know that SMP is defined to be a symptom or underlying mechanism in a subset of patients with CRPS
                and not a clinical entity. The positive effect of a sympathetic blockade is not essential for the diagnosis of
                CRPS. (nor does a negative result mean no CRPS is present - comment from RSDHope)                

     F) Understand that CRPS evolves through different stages, although the duration of each stage may be variable. 



courtesy of International Association for the Study of Pain (for the definition of many of these terms visit our Medical Terms page)

There are TWO TYPES OF CRPS

• CRPS Type I , formerly known as RSDS, can follow a minor nerve injury, a simple trauma (fall or sprain), break or fracture (especially wrist and ankle), a sharp force injury (such as a knife or bullet wound), heart problems, infections, surgery, spinal injuries/disorders, RSI's (Repetitive Stress Injuries), CTS (Carpal Tunnel Syndrome), Tarsal Tunnel Syndrome, injections, and even some partial paralysis injury cases. There are some cases of CRPS Type I where there the nerve injury cannot be immediately identified. As many as 65% of CRPS/RSDS cases come from soft tissue injuries; such as burns, sprains, strains, tears, and most of the problems that end in “itis” ; bursitis, arthritis, and tendonitis to name a few.
• CRPS TYPE II, once known as Causalgia, involves definable major nerve injury. 

Early recognition of the disease, correct diagnosis, and proper treatment, are all essential in keeping CRPS from becoming a chronic condition. Treatment must begin within months of onset or significant probability of long-term disability occur. Because there is no single test that correctly identifies the existence of CRPS in every patient the diagnosis must be made by the physician based on patient history and physical examination. It is essential to find an CRPS-educated physican to ensure an early and correct diangosis.

SOFT TISSUE INJURIES - CRPS/RSDS TYPE I
What exactly are soft tissue injuries? “Soft tissue” is an expression commonly used to refer to the “softer” aspects of the outer body, not including bones and joints. Muscles, tendons, and fascia are examples. Soft tissue injuries are commonplace and range from minor to very serious, depending on the nature of the injury. (Source: Healing Soft Tissue Injuries: Muscles, Tendons, Fascia and More). We have gradually made the change-over on the website from the old, accepted, formerly used term of RSD to the now more medically correct CRPS. For a more complete understanding of the two, please see the section CRPS OR RSDS?  From here on out we will be using the newer term CRPS.

WHAT PARTS OF THE BODY ARE INVOLVED?
CRPS is a multi-symptom condition typically affecting one, two, or sometimes even all four extremities. It can also be in the face, shoulders, back, eyes, and other areas of the body as well. CRPS is an involvement of nerves, skin, muscles, blood vessels (causing constriction, spasms, and pain) as well as bones.

The Orthopod website describes this aspect very well:
"Sympathetic nerves are responsible for conducting sensation signals to the spinal cord from the body. They also regulate blood vessels and sweat glands. Sympathetic ganglia are collections of these nerves near the spinal cord. They contain approximately 20,000-30,000 nerve cell bodies. CRPS is felt to occur as the result of stimulation of sensory nerve fibers. Those regions of the body rich in nerve endings such as the fingers, hands, wrist, and ankles are most commonly affected. When a nerve is excited, its endings release chemicals. These chemicals cause vasodilation (opening of the blood vessels). This allows fluid to leak from the blood vessel into the surrounding tissue. The result is inflammation or swelling leading to more stimulation of the sensory nerve fibers. This lowers the pain threshold. This entire process is called neurogenic inflammation. This explains the swelling, redness, and warmth of the skin in the involved area initially. It also explains the increased sensitivity to pain. As the symptoms go untreated, the affected area can become cool, have hair loss, and have brittle or cracked nails. Muscle atrophy or shrinkage, loss of bone density (calcium), contracture, swelling, and limited range of motion in joints can also occur in the affected limb. These are in part caused by decreased blood supply to the affected tissues as the condition progresses." (Source: A Patient's Guide to Pain Management: Complex Regional Pain Syndrome)

DOES CRPS SPREAD?
It may spread from one part of the body to another regardless of where the original injury occurred; and CRPS can spread in up to 70% of the cases. However, in a small number of cases (8% or less) it can become Systemic or body-wide. (Source: Healing Soft Tissue Injuries: Muscles, Tendons, Fascia and More) CRPS usually spreads up/down the same limb, or to the opposite limb, but in an increasing number of cases it spreads to other areas of the body. 

WHO GETS CRPS?
ANYONE can get CRPS. There are millions of Women, Men, and Children across the country with this disease. It is estimated there are between 1.5 and 3 million victims in the United States alone. It affects women many more times than men; as many as 75% of victims are women. The majority of victims develop the disease in their 30's and 40's but it affects all age groups from birth to 103. Although in recent years more and more patients in their teens seem to be developing the disease. (2) The exact number of patients is unknown and estimates can vary widely.

CRPS OR RSDS? WHICH IS IT?
CRPS, RSDS, TYPE I or TYPE II? WHAT SHALL WE CALL IT TODAY?
There have been so many questions about the name confusion surrounding RSD in the last couple of years. Is there a difference between RSDS and CRPS? What are the differences between RSDS and CRPS? One Dr tells me "You have RSD" while another says, "No, it is CRPS.", and a third tells me it is the same thing. Now I am totally confused. Which is the right term then? Why is a there a CRPS Type I and CRPS Type II; and what is the difference?

• CRPS, also known as Complex Regional Pain Syndrome, is new to many patients and even to some Doctors. 
• CRPS TYPE I is what, until recently has always been known as Reflex Sympathetic Dystrophy Syndrome, RSDS or classic RSD. It involves soft tissue injuries such as burns, sprains, strains, tears, and most of the problems that end in “itis” ; bursitis, arthritis, and tendonitis to name a few. It can even be caused by minor nerve injury. On this website, and most places on the internet and in the medical community it is now referred to as CRPS. 
• CRPS TYPE II involves damage to a major nerve. Plain and simple. It used to be called Causalgia.

So gradually everyone, Doctors, the medical community, and patients as well, have gradually been switching over to the new language; CRPS Types I and II.

CRPS - WHAT DOES IT FEEL LIKE?
I was asked recently at my Doctors office by a visiting intern, "What does CRPS feel like?" This is a question I get asked quite often by the media as well. They want to know what the typical CRPS patient feels when they experience this pain. Every patient is asked this question now and again and you have to think of your answer by the way the person asked. How interested are they in your answer and how detailed an answer are they looking for? If they are asking what is CRPS pain is like in comparison to other diseases you give the McGILL Pain Index answer, "CRPS pain is ranked as the most painful form of chronic pain that exists today and is ranked on the McGill Pain Index at a whopping 42!" (look for "causalgia" on the chart). If they are asking as a friend and you don't want to scare them away you simply say "It is the most pain I have ever experienced, it hurts constantly."

After all, many patients have already lost a great many friends because of the disease and they don't want to lose more. If they are a loved one you try and protect them. You don't want them to know how bad it is. You don't ever want them to truly understand how much you suffer because you know how much they would then suffer as well. Many times your answer is simply, "I am fine. It is nothing I can't handle." Once in a great while you may let them know how truly horrible it is, after all, they see it in your eyes. But most of the time you try and shield them from the depth of your pain. If you have only had it for a year or two you aren't as skilled at hiding your pain, or controlling it, as someone who has had it for ten or more.

I think long-term chronic pain patients get so good at masking their pain, our pain, that when we have to reveal it, when we come upon circumstances where medical professionals need to see the actual level of pain we are in, it is difficult for us to convey the depth of the pain, to truly let down our guard, those walls we have built up, for fear of not being able to put them back up again. It can actually be difficult to completely let down those protective barriers to reveal exactly how much pain we are in and many times our Drs, especially new ones, don't realize just how bad our pain actually is.

So, having said that, what does CRPS pain actually feel like? Let me share with you what I shared with my Doctor recently and maybe it will help you understand our pain a little better. CRPS pain can be anywhere in the body where there are nerves. Most commonly in the four extremities but some people have it in other areas such as eyes, ears, back, face, etc. What does it feel like? Well, if you had it in your hand, imagine your hand was doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out. Now imagine it both hands, arms, legs, feet, eyes, ears,; well, you get the picture. I sometimes sit there and am amazed that no one else can see the flames shooting off of my body.

The second component to CRPS is what is called Allodynia. Allodynia is an extreme sensitivity to touch, sound, and/or vibration. Imagine that same hand now has the skin all burned off and is completely raw. Next, rub some salt on top of it and then rub some sandpaper on top of that! THAT is allodynia! Picture getting pretty vivid? Now, because of the allodynia, any normal touch will cause pain; your clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by you in a crowded hallway, etc. In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. This is what allodynia is all about. Imagine going through your daily life where everything that you touch, or that touches you, where most every noise around you from a passing car or plane to children playing, causes you pain. In addition to the enormous pain you are already experiencing from the CRPS itself. Imagine living with that pain and allodynia 24 hours a day, every day, for months, years, and longer. There are many other symptoms which you can read about in our CRPS SYMPTOMS section but these are the two main ones that most patients talk about the most.

I hope this helps you understand what we deal with every day.
Peace, Keith Orsini

INCIDENCE OF CRPS
According to the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institutes of Health (NIH) "it has been estimated that CRPS may present itself in 2-5% of individuals with peripheral nerve injury" ( See National Institutes of Health - NIH CRPS INCIDENCE   or the NINDS website as well).

DOES CRPS GO INTO REMISSION? OR BURN ITSELF OUT?
These are two of the most commonly asked questions.

REMISSION AND CRPS
Will your CRPS go into remission? Unfortunately, not very likely but it depends on the age of the patient and the type of injury sustained. The incidence of remission is extremely low. It is highest for teens, especially if they are diagnosed within 1 to 12 months and treated aggressively. For adults, the need for quick diagnosis is even more urgent; within the first 3 to 6 months is imperative and that must be followed with aggresive therapy. The type of therapy depends on the type of CRPS you are diagnosed wit Newer treatments, especially the ketamine infusion in-hospital 5 day Awake technique, are proving successful in more than half of the patients treated and many are experiencing complete pain relief for up to 1, 2 years or more. As the study of CRPS continues and more is learned the hope is that more patients will be able to experience longer periods of pain relief. But again, the relief is temporary and not a cure. h.

IS IT CONSIDERED REMISSION IF I AM NOT IN PAIN BUT STILL TAKE PAIN MEDICATION?
This is a question we get asked quite often. Patients get their pain under control with the help of some of the wonderful physicans and therapists out there through the use of medications and physical therapy; usually a combination of aqua therapy and cardio, such as treadmill or stationary bike. The less pain they are in the more they can do physically, the better mood they are in emotionally, the better they sleep, sometimes leading to the need for even less pain medication; it is all a great healing cycle. For some, their pain goes away completely but they still need the medication to keep it away. Does this mean true remission then? The answer could be debated back and forth forever but the bottom line is, does it matter? If you have no pain and have improved your quality of life enjoy it! Take extra precautions, absolutely. Someone who has had CRPS once is more likely to have a recurrence than someone who has never had it, but don't let that thought rule your life.

WILL MY CRPS BURN ITSELF OUT IN A YEAR OR TWO?
No one is really sure how this Urban myth got started but it is amazing how many patients are told this by their Doctors still to this day with all the knowledge now available on this disease. The answer is no. Your CRPS will not burn itself out. Not in a year, not in two or three or more. (I sound like Dr Seuss!) What does that even mean? Ask your Doctor if they ever tell you that, to define what that phrase actually means, physiologically. Ask them to describe the process of CRPS burning out.

Does that mean you will have CRPS forever? Not everyone will, no. But there is simply no way to determine ahead of time how long yours will last. It could be a few years it could be many years. There just isn't enough empirical evidence collected to say one way or another. Much more research is needed into this disease. This is another reason why we need so desperately to raise awareness.

THE ORIGINS OF COMPLEX REGIONAL PAIN SYNDROME
CRPS has been documented since the Civil War under many different names. It was first studied by Dr. Weir Mitchell. In October of 1864 the first dent in the armor of CRPS was made. Weir Mitchell and his associates G.R. Moorheouse and W.W. Keen published a book called "Gunshot Wounds and Other Injuries of Nerves". We were fortunate to be able to procure a copy of this book. This book contained the account of the symptoms and signs of peripheral nerve injuries as they had observed them in Unionist soldiers at Turners Alne Hospital for Nervous Diseases in Philadelphia. Their description is so classic and vivid that it deserves an abbreviated quotation here.

"In our early experience of nerve wounds, we met with a small number of men were suffering from a pain which they described as ‘burning‘ or as ‘mustard red-hot‘ or as ‘red-hot file rasping the skin‘ ... The seat of burning pain is very various; but it never attacks the trunk, rarely the arm or thigh, and not often the forearm and leg. It's favored site is the foot or hand. In these parts it is to be found most often where the nutritive skin-changes are met with; ... Its intensity varies from the most trivial burning to a state of torture, which can hardly be credited, but which reacts on the whole economy, until the general health is seriously affected. The part itself is not alone subject to a deep burning sensation, but becomes exquisitely hyperesthectic, so that a touch or tap of the finger causes pain. Exposure to the air is avoided by the patient with a care which seems absurd, and most of the bad cases keep the hand constantly wet, finding relief in the moisture rather than the coolness of the application. As the pain increases, the general sympathy becomes more marked. The temper changes and grows irritable, and the face becomes anxious, and has a look of weariness and suffering. The sleep is restless, and the constitutional condition, reacting on the wounded limb, exasperates the hyperestic state so that the rattling of a newspaper, a breath of air, the step of another across the ward, the vibrations caused by a military band, or the shock of the feet in walking, gives rise to an increase of pain. Perhaps few persons who are not physicians can realize the influence which long continued and unendurable pain may have on both the body and mind. Under such torments the temper changes, the most amiable become irritable, the bravest soldier becomes a coward, and the strongest man is scarcely less nervous than the most hysterical girl."

Three years later, Mitchell first used the term Causalgia (from the Greek kausis-burning and algos-pain). It was right on the money then, and still is today. We must now teach Drs., Nurses, and others in the health care industry to diagnose it earlier and treat it faster and more aggressively.

McGill Pain Index   - For a more detailed explanation of the McGILL Pain Index visit HERE.

www.eorthopod.com/node/10966

NERVOUS SYSTEM
Here is a full body diagram showing the nervous system (click on it to enlarge)

NERVOUS SYSTEM CHART
HERE IS AN CHART OF THE NERVOUS SYSTEM (click on it to enlarge)

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