About CRPS/RSD/Causalgia

Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is a chronic neurological syndrome characterized by:

  • severe burning pain
  • pathological changes in bone and skin
  • excessive sweating
  • tissue swelling
  • extreme sensitivity to touch
  • Severe sensitivity to temperatures (severe heat or cold intolerance, although cold has proven to worsen RSD), and/or sweating
  • swelling (at the area of original injury, while for example, the whole limb would be involved, only part of it where the original injury occurred will swell-this can often by many specialists be considered diagnostic) and/or inflammation
  • muscle spasms, myoclonic jerks, or muscle tics
  • anxiety & depression (felt to be related to being in constant pain), trouble concentrating, irritability (usually due to lack of sleep)
  • bone loss (in later & more severe stages)
  • skin lesions (rare & in very severe cases and very late stages) & immune system problems (often due to nutritional difficulties, and chronic stress on the body from the energy put forth from severity of pain)
The most prominent symptom is being chronic pain.

The pain has been described as burning, shooting, stabbing and aching. Some report bizarre feelings of cold water being splashed on the affected area, goose bump, and distonia (difficulty initiating movement). Over time symptoms can change, become worse and sometimes spread to other areas apart from the original injury

There are Two Types of CRPS - Type I and Type II

  • CRPS Type I (also referred toD) - cases in which the nerve injury cannot be immediately identified
  • CRPS Type II (also referred to as Causalgia) - cases in which a distinct "major" nerve injury has occurred
  • CRPS is best described in terms of an injury to a nerve or soft tissue (e.g. broken bone) that does not follow the normal healing path
  • CRPS development does not appear to depend on the magnitude of the injury. The sympathetic nervous system seems to assume an abnormal function after an injury.
Since there is no single laboratory test to diagnose CRPS, the physician must assess and document both subjective complaints (medical history) and, if present, objective findings (physical examination).

Criteria for Diagnosing

Complex Regional Pain Syndrome Type I (RSD)

  • The presence of an initiating noxious event, or a cause of immobilization
  • Continuing pain, allodynia, or hyperalgesia with which the pain is disproportionate to any inciting event
  • Evidence at some time of edema, changes in skin blood flow (skin color changes, skin temperature changes more than 1.1°C difference from the homologous body part), or abnormal sudomotor activity in the region of the pain
  • This diagnosis is excluded by the existence of conditions that would otherwise account for the degree of pain and dysfunction
Allydonia: pain due to a stimulus that does not normally provoke pain.

Hyperalgesia: excessive sensitivity to pain. Not to be confused to hyperanalgesia; the excessive response to narcotic pain medications where the medications themselves are the cause the pain

Not to be confused with hyperANALGESIA: defined as the worsening of symptoms of pain due to the use of opiate narcotic pain medications.........

Complex Regional Pain Syndrome Type II (Causalgia)

  • The presence of continuing pain, allodynia, or hyperalgesia after a nerve injury, not necessarily limited to the distribution of the injured nerve
  • Evidence at some time of edema, changes in skin blood flow (skin color changes, skin temperature changes more than 1.1°C difference from the homologous body part), or abnormal sudomotor activity in the region of pain
  • This diagnosis is excluded by the existence of conditions that would otherwise account for
    The main basic definition is that the pain is continuing and in disproportionate to any expected outcome, or length of continuiation.
    1. Sensory: hyperesthesia and/or allodynia
    2. Vasomotor: Reports of temperature differences between, say if one leg or arm is affected, the two limbs, and/or skin color changes between the two limbs.
    3. Sudmotor/swelling: Reports of swelling, sweating changes, and differences between sides
    4. Motor/Trophic: Reports of decreased ROM (Range Of Motion) and or motor dysfunction (weakness, inability to initiate movement (dystonia), and/or changes in growth of hair, nail or skin.
    Must show objective (visible to the clinician at evaluation) TWO or more of the following:
    1. Sensory: hyperesthesia (to pin prick) and/or allodynia (light touch)
    2. Vasomotor: Measureable presence of temperature differences between, say if one leg or arm is affected, the two limbs, and/or skin color changes between the two limbs.
    3. Sudmotor/swelling: Presence of swelling, sweating changes, and differences between sides
    4. Motor/Trophic: Presence of decreased ROM (Range Of Motion) and or motor dysfunction (weakness, inability to initiate movement (dystonia), and/or changes in growth of hair, nail or skin.
    All other diagnoses have been ruled out, and nothing else makes sense. A sign is a clinically observable picture, such as swelling, presence of changes in color, or even for example, hyperalgesia that is clear cut: a good and well-trained, experienced clinician can discern a “false” positive in respect to a patient who may be attempting to get an RSD diagnosis for either attention-seeking or drug-seeking purposes.

    Since no clear “pathophysiology” is present, or agreed upon, at least, for RSD, then we have to go on what is present; and that would be to rule out everything else, such as for example, surgical complications like compartment syndrome, sciatica, diabetic neuropathy. But EMGs are generally not done in diagnosis of RSD as most agree it would definitely seem to be cruel to do this to someone who MIGHT even have RSD.
There are two types of RSD/CRPS

Type 1: Without evidence of significant evidence of nerve damage.

Type 2: With evidence of significant damage to nerves—such as injury to the nerves at the site of evidence of an injury (known also as Causalgia) the degree of pain and dysfunction

Description Symptoms

There are FOUR Main Symptoms/Criteria for a diagnosis of CRPS:

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

Not all four symptoms are required for a diagnosis but most patients do have at least three out of the four at any one time. There are a great many additional symptoms that can occur and not all patients will have all symptoms and some of the symptoms may even be transient depending on the time of day, weather, noise level, etc. What makes this disease even more difficult for Drs to diagnose and treat is that patients can present with different symptoms at different times, even from one appointment to the next

Not all four symptoms are required for a diagnosis but most patients do have at least three out of the four at any one time. There are a great many additional symptoms that can occur and not all patients will have all symptoms and some of the symptoms may even be transient depending on the time of day, weather, noise level, etc. What makes this disease even more difficult for Drs to diagnose and treat is that patients can present with different symptoms at different times, even from one appointment to the next.

CONSTANT PAIN can be described as burning pain as if a red hot poker were inserted into the affected area; as well as throbbing, aching stabbing, sharp, tingling, and/or crushing in the affected area (this is not always the site of the trauma). The affected area is usually hot or cold to the touch. The pain will be more severe than expected for the type of injury sustained. This is a hallmark of the disease. Allodynia is usually present as well (extreme sensitivity to touch). Something as simple as a light touch, clothing, sheets, even a breeze across the skin on the affected area can cause an extreme amount of pain to the patient. Pain can also be increased by sounds and vibrations, especially sharp sudden sounds and deep vibrations. This makes it increasingly difficult on the spouses, children, and other family members; as their softest touch can now cause pain instead of comfort. If the patient has not been properly diagnosed yet and these sensations not properly explained, these symptoms can cause extreme duress and confusion to all involved.

INFLAMMATION is not always present. It can take various forms, the skin may appear mottled, become easily bruised, bleeding in the skin, small red dots, have a shiny, dry, red, and tight look to it. An increase in sweating usually occurs as well as swelling in and around the joints (shoulders, knees, wrists). In some patients a lack of sweating may also occur, and may even go back and forth between the two.

SPASMS result in a feeling of coldness in the affected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back.

The fourth part of this square is
INSOMNIA and EMOTIONAL DISTURBANCE. CRPS affects the limbic system of the brain. Doctor Hooshang Hooshmand described it well; " The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called "limbic system". This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain." This causes many problems that might not initially be linked to a disease like CRPS. Chief among them are Depression, Insomnia and short-term memory problems. CRPS can cause Depression, NOT the other way around.

CRPS causes insomnia by not allowing the body to drift into REM, or rapid eye movement, sleep. This is the sleep that allows the body to use its own healing abilities. Without it, the patients pain cycle continues and becomes more entrenched. As the body cannot heal itself, it becomes harder to achieve that sleep which makes the pain worse and so the cycle continues. Many patients can feel they are losing their mind as their ability to remember things, short-term, greatly decreases. Things like; what someone told you an hour ago, what you had for lunch yesterday, whether you took your pills this morning, what you were just talking about, etc., are quickly forgotten. You are NOT losing your mind. Loss of short-term memory is part and parcel of CRPS. Other signs of problems here would include the inability to think of, um, well, ah, hmm, just the right word. The patients ability to concentrate is also lessened while their level of irritability is increased. These problems get even worse as the sleep cycle continues to worsen, weeks and months on end building a sleep deficit you cannot seem to recover from.

Do these symptoms sound familiar to you? Do you also sometimes have an increase in your pain when your stress level is higher? Or the noise level is higher? Do you want to crawl into a hole by yourself and pull it in after you? Does the simple rustling of a newspaper or the soft touch of your spouse send you through the ceiling in pain? Do you sometimes have trouble finding a certain word? Do you sometimes completely lose

Doctors classify CRPS into different stages. Although now most Doctors use these simply as guidelines since the more that is discovered about CRPS the more they learn that there are no definable timetables for these stages especially with the advent of the new terminology of CRPS TYPES I and II. For more on the problems with using stages to classify CRPS be sure to read the information that follow with stages III and IV


STAGE ONE: Stage one is called the acute stage and can last one to three months from onset. Some characteristics are warmth, coolness, burning pain, edema, increased sensitivity to touch, increased pain, accelerated hair/nail growth, tenderness or stiffness in the joint, spasms, limited mobility, some bony changes may be visible on X-Ray, abnormal amount of pain for the injury. In this stage there is decreased sympathetic activity. For the patient, she, (75% of the time a female), may feel as if their limb is on fire and is amazed when it actually feels cool to the touch. This is due to the lack of blood flow to the extremities.
STAGE TWO: Stage two is called the Dystrophic Stage and can last three months to one year. Pain is constant, as in stage one, and throbbing, burning, aching, crushing in nature and is exacerbated by any stimuli. The affected limb may still be edematous, cool, cyanotic (discolored), or mottled (different shades). Nails are brittle and ridged. Pain and stiffness persists. Muscle wasting may begin. Patient usually starts experiencing short-term memory problems , as well as increased pain from noises and/or vibrations, and other changes in the limbic system. These may include, but are not limited to; the inability to concentrate; inability to find the right word when speaking; depression; and irritability. X-Rays may reveal signs of osteoporosis. Patients may start to repeat themselves. In this stage there are also signs of increased sympathetic activity.

Some Doctors will try and use tools such as x-rays, Bone Scans, thermograms, and others during Stage 2 and Stage 3 to confirm a diagnosis of CRPS. Understand that while these tests
MAY show the presence of CRPS, they are rarely conclusive and they should not be used as the sole determining factor in whether a patient does or does not have CRPS. The only positive way of diagnosing CRPS is a physical exam by a Doctor knowlegeable in CRPS. These other tests should only be used as one of many tools to aid in that diagnosis. They are also useful in tracking the progress of the disease over the course of the time.
STAGE THREE: Stage three is called the atrophic stage and can last an unlimited amount of time. Pain, as usual, is typically constant but can increase or decrease, depending on the person, and the CRPS may spread to other parts of the body. At this stage irreversible tissue damage may occur. Skin becomes cool, thin, and shiny. Contraction of the extremity may occur as well as atrophy of the limb (decreased joint movement). Skin atrophies (wasting away) and loss of movement or mobility may also occur. X-Rays may show marked demineralization and increased osteoporosis. At this stage many CRPS patients are not likely to be effectively treated with blocks as the percentage of SIP (Sympathetically Independent Pain) is now much greater than the percentage of SMP (Sympathetically Mediated Pain); meaning the majority of the pain signals are now originating in the brain and not at the original CRPS site where a local block would help. Pumps and Spinal Column Stimulators are usually discussed at this stage but there are other treatments available and more are coming all the time. Surgical treatments such as these should only be considered as a last resort as invasive procedures can cause additional problems for CRPS patients.
STAGE FOUR: Most patients will never advance to Stage 4. In this Fourth Stage, CRPS is resistant to many forms of treatment. Also in this stage there is an involvement of the inner organs. Please do not allow any Doctor to amputate the affected limb unless it is a medical necessity due to gangrene or the like. While it is infrequent, amputations in an effort to eliminate the CRPS pain are still being done. This is typically ineffective and extremely destructive; physically and mentally. It not only does not work but also, in most cases, will exacerbate the CRPS/RSDS and increase the spread rate. Always ask to speak to a Doctor's other patients before undergoing any type of implant or surgical procedure. Educate yourself on the internet. Talk to other patients. In the end, YOU are most responsible for what happens to your body. It is the only body you get so treat it with the utmost care. You deserve first class care always!

THE PROBLEMS WITH STAGESWhile being able to divide patients into neatly defined stages is seen as a plus by some diseases it has always presented a problem for Doctors who are trying to make a diagnosis for CRPS and for patients who are trying to understand it, for the following reasons:

  • Most patients have symptoms from multiple stages at the same time making a definitive diagnosis difficult.
  • Stage 1 and Stage 2 are so brief, sometimes less than a few months, and very few patients are diagnosed within those first few months.
  • Depending on which Type of CRPS you have you may not develop many of the symptoms listed for each of the stages, again making for a confusing diagnosis.
  • Some patients may never advance to Stage 3 and only a very few patients will ever advance to Stage 4.
  • It may be difficult to determine your stage due to the combination and/or lack of symptoms.
  • A better benchmark of where your CRPS is may be mapping your percentages of SMP and IMP over a period of months. CRPS is a progressive disease, meaning it advances over time. Placing a patient into a clearly defined Stage with a highly fluid disease just doesn't make medical sense.
  • Not all Doctors even agree on the existence of a Fourth Stage.
  • CRPS is an evolving and constsantly changing disease. The symptoms you have today may not be the symptoms you have next week, depending on how your body is reacting to; the weather, your stress levels, your current medication, the time of day, your living conditions, the time of year, where you live, your stress level at home, the amount of sleep you have been getting, your reaction to your last medical treatment, where you are in the stage of the disease, etc. This makes it even more difficult for even the most knowledgeable Doctors to correctly diagnose and treat the disease. One more reason why the patient needs to educate themselves as much as possible. Don't assume your Doctor knows everything there is to know about CRPS and especially about your individual case. It is a very difficult disease to treat


    There have been so many questions about the name confusion surrounding CRPS in the last couple of years.

    Is there a difference between CRPS and RSDS?

    - What
    are the differences between CRPS and RSDS?

    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 between the two?

    CRPS, also known as Complex Regional Pain Syndrome, is fairly new to the lexicon.
    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 medical issues that end in “itis” ; bursitis, arthritis, and tendonitis to name a few. On this website, and most places on the internet and in the medical community it is now referred to as CRPS. It can involve minor nerve damage.CRPS TYPE II involves damage to a major nerve. It used to be called Causalgia. CRPS Type II also involves a clearly defined nerve injury. This is not always true of Type I where the source of the injury is not always known.

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

How is CRPS Diagnosed?

CRPS can be diagnosed in a number of different ways. The best and most accurate way is a clinical diagnosis by a CRPS-educated physician, most often a Neurologist. Now we need a few definitions. What is a clinical diagnosis and what is a CRPS-educated physician? Lastly, are there other ways of diagnosing CRPS?

We need to answer the second question first. A CRPS-educated physician is someone who is up-to-date with the latest information on Complex Regional Pain Syndrome, as well as someone who has treated a number of CRPS patients successfully. The information in this field is changing rapidly and in the last few years has taken enormous steps forward. The more that is learned, the more it is shown that the best treatments for CRPS are the ones that are the least invasive. If a physician, or therapist, is not familiar with treating CRPS patients then serious problems and setbacks can result.

A clinical diagnosis occurs when the patient presents himself to the physician. It is what the Doctor actually sees and hears in his office, not just reads in a test or report. To quote Sir William Osler: “
Observe, record, tabulate, communicate. Use your five senses.... Learn to see, learn to hear, learn to feel, learn to smell , and know that by practice alone you can become expert. Medicine is learned by the bedside and not in the classroom. Let not your conceptions of disease come from words heard in the lecture room and read from the book . See, and then reason and compare and control. But see first.”

What does the Doctor look for? Not all patients will have the symptoms listed below at every stage of the disease, especially early on, but the physican should be alerted to;
  1. Pain that exists long after the injury has healed.
  2. Pain that is out of proportion to the injury sustained. (these are two hallmarks of the disease that Drs look for).
  3. Changes to the skin; color/texture, dryness, tightness, redness, skin rashes, possible sores, as well as an increase, or sometimes decrease, in sweating.
  4. The presence of a constant chronic burning pain. While there are some cases where there is no burning pain, it is rare.
  5. Spasms; of the blood vessels and muscles.
  6. The existence of a prior injury that could have damaged a nerve.
  7. Use of casting, surgery difficulties, injury subsequent to the original incident.
  8. Lastly, they need to look for symptoms that the patient might not know to share. These are changes that occur in the limbic system that cause;
  • short-term memory loss
  • concentration difficulty
  • insomnia
  • difficulty finding the right word when speaking
  • sensitivity to sound, vibration, smell, barometric pressure changes, and touch
  • depression
There are other things to look for obviously but this gives you a basic idea. Are there other methods used to diagnose CRPS? Yes. Many are not very effective at truly diagnosing CRPS but are used none-the-less. Among these are thermography, MRI's, Cat-scans, X-rays, Bone-scans, accupuncture, EMG's, and many others. While some of these may show they presence of CRPS or some of its symptoms, often times it misses the disease altogether. It depends on the stage of the disease, the age of the patient, other diseases or problems the patient may be experiencing, how well medications might be working at the time of the test, as well as the skill level of the person administering the test. Unlike a "typical and straightforward" disease that is easily delineated and diagnosed with clearly defined symptoms, CRPS is a difficult diagnosis that takes a skilled and CRPS-experienced physician in a clinical setting where he can observe the patients symptoms, sometimes over several visits, at different times of the day, and under different stress levels.DOES IT MATTER WHEN PATIENTS ARE DIAGNOSED?
Patients must be diagnosed and treated aggressively within the first six to twelve months of the onset of symptoms if there is to be any real chance of reversal. While some Doctors may quote a lower figure all would agree that the odds decrease significantly every month after that with the greatest drop after twelve months. Also, the younger the patient the better their chances at reversal are; especially teenagers and below. There is now new information available to Doctors to help them in their diagnosis. Typically patients see between 5 and 10 Doctors before getting a correct diagnosis. According to a national survery conducted by American RSDHope; Our survey came back with 7-10 - 55%, 5-6 - 17%, 3-4 - 14%. That number is dropping slowly as the knowledge about CRPS increases

Medical Articles - Medical Treatments

There are many different types of treatments for CRPS. New ones seem to pop up every day and what works for one typically does not work for the majority. This makes treating this disease even more difficult. Most physicians seem to agree that a combination of diet, exercise, physical therapy, and medication hold the key to treating the disease for the majority of patients. Exactly what that combination is and which medications those are remains a sticking point and a point of contention among pain management doctors. As to diet, many subscribe to the theory that the chronic pain diet is a very good starting point. You can find that by going to http.www.RSDRX.com , that was first developed by Dr Hooshang Hooshmand.

As to what treatments you can use in addition to the above? We have shared some examples below but there are many, many others out there. Before you try anything new we urge you to seek out as much research as possible. Llook for double-blind studies if available. Talk to as many patients as you can find who have had the procedure done, years ago if at all possible, and see what they think now. Try to stay away from invasive procedures if you can (surgical) since CRPS seems to be aggravated by anything invasive. Learn about the procedure before you have it, don't just assume the Dr knows best, and ASK questions!

If your Dr tells you "if you don't have this procedure I simply cannot help you", move on to another Dr. Chances are there is a vested interest there and it is not yours. Find someone who will put your best interests first, they are out there. There are MANY wonderful Pain Management Physicians out there who seek to provide pain relief to their patients first and foremost!

Remember, no one is going to care more about what happens to you in the end than you. So be proactive! You have access to the internet, use it. Do your due diligence.

Aquatic Therapy and CRPS: Should you fear to tread…water?
by Melanie E. Swan, OTR/L
What is aquatic therapy?
Aquatic therapy is therapeutic exercise performed in a body of water-generally a lap pool or a deep water pool. Aquatic therapy often occurs in a group/class setting, though it may also be part of an individual treatment session with a therapist. Aquatic therapy may be used for people with RSD/ CRPS who have limited movement and/or have low tolerance for resistive therapeutic activities.
Why do you use water for therapy?
Water provides a combination of buoyancy and resistance/challenge. The buoyancy of the water supports your body weight differently, making you feel lighter and taking some of the pressure off joints so you can move more freely. The movement of the water during exercise challenges balance, helping to strengthen core/abdominal muscles. Moving faster or slower changes the resistance of the water, making it harder or easier to complete the exercises. Aquatic equipment, such as kickboards, foam noodles, webbed gloves, or aqua fins, can also increase the resistance of exercises.
What is an aquatic therapy session like?
An occupational therapist or physical therapist designs a series of exercises to promote increased strength, balance, and range of motion or weight bearing. Some programs may even involve floatation for relaxation of muscles. These exercises are tailored to meet the needs of the patient and the aquatic environment available.
What should the temperature of the water be?
There is no specific water temperature that is ideal for everyone. Most indoor pools are kept between 78 to 82° if they are used for vigorous swimming or exercise. Temperatures of 83 to 88° are optimal for moderate exercise. Temperatures warmer than 88° promote increased relaxation and circulation but can increase muscle fatigue more rapidly during exercise.
Will the water harm my CRPS if it feels cold?
Many people with RSD/CRPS prefer slightly warmer water during exercise, as often they are more sensitive to cold. Cooler water may initially produce some constriction of blood vessels; however, this is not harmful as it is your body's natural mechanism to conserve body heat. This response can be reduced by performing a few minutes of vigorous exercise to increase muscle activity and circulation. Neither heat nor cold has proven to be more effective in the progression of aquatic exercise. Varying water temperatures during exercise is also an excellent way to work on temperature desensitization.
Is there a difference between aquatic therapy in a lap pool or deep water pool?
Lap pools are relatively shallow (approximately 3.5 to 4.5 feet deep) but offer a greater ability for patients to work on weight bearing and balance exercises during ambulation activity-walking, side-stepping, running, hopping, etc. Deep water pools offer greater ability to perform exercises while treading water or wearing a floatation device. This allows a greater amount of the body to be submerged below the water surface and provides greater resistance to upper body activity. However, most exercises can be completed in either setting with the use of aquatic equipment and modification or creativity.
Is there a difference between aquatic exercises and therapeutic activities outside of the water?
The water provides a place to try new activities, to improve ease of movement, to decrease muscle guarding and begin working on strength and balance. However, these activities need to be transitioned into a land-based exercise program to improve daily function. Aquatic therapy may be a good place to start therapeutic exercise; however, it should not be the only therapeutic exercise used during the treatment of RSD/CRPS as the buoyancy of the water prevents full weight bearing or loading of the affected area. Should I have aquatic therapy for my CRPS?

You should consult your physician before beginning any exercise program. Your physician or your Physical Therapist/Occupational Therapist can help determine if aquatic therapy is the right intervention for you.

Melanie E. Swan, OTR/L is a Resource Clinician at the Rehabilitation Institute of Chicago , Chronic Pain Care Center, 1030 N. Clark Street, Suite 647, Chicago, IL 60610.

The use of Hypnosis in the treatment of RSD is somewhat controversial and has had mixed results. Some of this stems from the fact that RSD patients are wary of any treatment that might possibly insinuate the pain is in your head and that reported positive results have been few and far between. Because of the recent work by Dr Flemming though, some of these ideas need to be re-considered. He has had some very positive results but cautions that if done incorrectly, it can cause more harm than good. I recently had a discussion with him regarding this and he shared his results with me as follows. In RSD, hypnosis is the generation of images in the mind that can alter function of the autonomic nervous system. This is a normal ability -- examples include generation of images of food leading to salivation, imagining something scary which can lead to fast heart rate and so on. In a normal population, some people are totally fluent at this, some can barely do it at all. Most people have an average capacity, they can use images to alter autonomic function moderately well.

If RSD is vectored by autonomic function, (which it definitely is) one might not be surprised if using appropriate images can alter both symptoms and physical signs of RSD. My jaw hit the floor when I saw this happen the first time. The woman had long established RSD with her left arm contracted so it was stuck at her right shoulder with the head pulled down to the left. Using specific images, her arm relaxed totally, it became totally pain free, the muscular spasm faded and she regained full movement of her arm, shoulder neck and head. More importantly the vascular spasm released so the arm and hand became normally perfused. After recovering composure, I decided to explore this technique on a series of patients at the Univesity of Chicago, and in my first 13 patients, saw long term remission in about two thirds. We put these cases into the American Pain Society annual meeting as a poster presentation in about 1992, and at this meeting, found Michael Gainer, a psychologist who had been using similar techniques on a series of patients in Akron, Ohio. He and I decided to form a free-standing clinic specifically to treat RSD and this opened in 1994. We continued work until 1999 and closed after selling the clinic to a physician's practice management group.

Over these years, we saw approximately 1000 patients with RSD. Almost all these patients had been credibly diagnosed at academic pain treatment centers in the Chicago area and all had failed in conventional treatment protocols. We applied a seamlessly integration of standard medicine, advanced hypnotic and psycological methods together with rehabilitative therapy including massage therapy (not a la Craig's List). We were able to follow up firstly on about 42 patients in whom we saw the same outcome as our initial 13, and then on the 250 with whom we could still communicate. Again, 60% were able to gain long term remission as defined by loss of symptoms, absent need for medications and resotration of function. We published in the Clinical Bulletin of Myofascial Therapy (such a waste) and did a more extensive poster presentation at the APS.

This is a summary of what we learned:
1. RSD seemed to affect people at either of the extremes of hypnotic ability. An average hypnotic ability seemed to afford immunity to the disease.
2. People at the high end of the scale were able to modify symptoms with fluency. 85% of patients had an extreme hypnotic ability. 15% had essentially none.
3. People at the low end of the scale had no capacity to modify symptoms. None of these patients recovered.
4. The extent to which patients were able to reduce symptoms during their first experience of hypnosis was predictive of their ability to gain long term remission.
5. Patients able to reduce symptoms using hypnosis fell into 3 approximately even groups:
a. Group 1 -- patients quickly learned these techniques -- they essentially gained recovery during their first 2 weeks of treatment.
b. Group 2 -- in which RSD was kept alive by diagnosable sources of pain, such as nerve entrapment, mononeuropathy, arthritis and so on. I only remember one smoker who recovered -- nicotine stimulates sympathetic activity and makes it more difficult to take control using hypnosis.
c. Group 3 -- in which the symptoms of RSD formed the presentation of behavioral issues.

We were left convinced that hypnosis, when integrated with standard medical management and rehabilitative therapy has an extremely powerful role in the management of RSD.
Points to remember:
First -- it is difficult to discern which patient will fit into which group early in evaluation.
Second -- If a patient has a psychological/behavioral component to RSD, a lay hypnotist can cause SERIOUS DAMAGE by attempting to coax remission without addressing the psychological issues. This work requires EXTREME SKILL and must be taken VERY SERIOUSLY.
Third -- RSD is definitely a physical disease. However behavioral involvement is clear -- for example most patients describe worsening of symptoms with stress, the placebo response is about 60%, people with average hypnotizability don't seem to suffer from RSD, patients receiving specific forms of behavioral therapy seem to gain remission much more commonly than those who do not. Behavioral components do not necessily indicate psychological disease -- Again, behaviors can be normal responses to life's situations, but they can suggest routes to remission.

DO NOT BE AFRAID of psychological/behavioral issues to do with RSD. It does NOT mean that RSD is "all in your head." RSD is definitely a physical disease, but behavioral components do exist, as they do in practically all illnesses, and addressing them may be vital to gaining remission. The above represents only the tip of the iceberg of information applicable to this field. Please let me know if you would like more information, and if you would like me to send the text and figures from our scientific presentations. I am aware, of course, of the controversy in which various teams suggest that behavioral components exist vs. do not exist. Each side to this argument has merit, the most important feature of this note is the implied invitiation for the various contenders to begin sensible dialogue.

Best regards,

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