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RSD and Does does it affect our internal organs?

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Post  byrd45 on Fri Jan 09, 2009 1:04 pm

3.The same is true with a lot of minor injuries to the knee with full-blown clinical picture of cold extremity, flexion, weakness and atrophy of the muscles around the knee, difficulty with weight bearing, severe constant burning pain, all of which prompt the surgeon to explore the knee with obvious disastrous results.

Opposite to the prevalent notion of "treat the source" the proper principle should be treat the RSD and then see what happens to the so-called source.

Even nerve blocks should not be done in the area of inflammation of RSD (over the wrist, ankle, dorsum of the foot, dorsum of the hand or the knee). Instead the nerve blocks which are very effective in treatment of RSD, should be done in axial area (over the spine) where the nerves enter and exit from the spinal cord to the involved part of the extremity.

Simply said, do not needle, amputate, or operate the area of inflammation of the RSD.


The diagnosis is achieved by the physician's familiarity with the triad of RSD, as mentioned above. Confirmatory tests, such as beneficial effect from sympathetic nerve block, as well as the use of bone scan or thermography are quite helpful. None of the above tests yield 100% positive diagnostic proof. Even sympathetic nerve block is positive and relieves the pain in early stages of the disease. In the later stages, there has been enough damage - due to vasoconstriction - in the involved area, that non-sympathetic pain contaminates the clinical picture and the patient does not receive 100% relief from the nerve block.


Early diagnosis in the first six months to maximal two years is the key to successful treatment [6]. Surgical procedures have no place in treatment of RSD. Sympathectomy or removal of a part of the chain of sympathetic ganglia on the side of the spine) has an extremely high rate of failure. It has been reported to help the war type of RSD, which is quite different from civil type. In the war type, the soldier is a young teenager who responds favorably to treatment, regardless of the mode of treatment. The war time RSD is due to high velocity damage to the nerves in the proximal parts of the extremities and sympathectomy, even in these cases, has a high rate of failure in the long run. The civil type of RSD is due to a small damage of the sympathetic nerves in the central or peripheral nervous system.

If the patient lives longer than five years, the rate of failure from sympathectomy is over 80%. The scar of the surgical procedure becomes a new source of RSD. Removal of a part of sympathetic ganglia does not prevent spread of the disease in the areas of the body where the sympathetic nerves have been removed. This is due to the fact that the adjacent sympathetic nerves eventually compensate for the lack of sympathetic function due to surgery.


Insertion of epidural spinal stimulators has been quite vogues. In our comparison of 41 RSD patients treated with spinal stimulators vs. 40 non-RSD chronic pain patients who received the same treatment, the RSD group of patients had only maximum three and one half to four months relief of pain. Afterwards, the stimulator acted as a foreign body and became a new source of RSD. The reason may be due to the fact that the stimulators are digital in nature with predicted rhythmic stimulation, whereas the pain of RSD is practically constant and analog (variable) in nature.

No single physician is smart and potent enough to treat RSD. Successful treatment requires a teamwork of physical medicine, anesthesiology, and neuropharmacology physicians. The keys to successful treatment are early diagnosis, early mobilization and extensive physical therapy, and early detoxification of the patient from addicting narcotics, alcohol and addicting tranquilizers.

The anesthesiologist should interrupt the sympathetic hyperactivity by doing repetitive, successive (six) nerve blocks, combined in the same day with physical therapy and exercise. Discontinuation of ice and all other assistive devices, such as wheelchair, brace, cast, walker, etc., is essential.

The addicting drugs should be replaced with the treatment of choice for chronic pain in the form of newer-generation antidepressants, Paxil, Zoloft, and Trazodone, which are not trycyclic antidepressants. Trazodone is the treatment of choice to replace the tranquilizers and sleeping pills. It provides normal sleep, as well as prevention of chronic pain. The patient can be detoxified quickly and easily by discontinuation of the narcotics and replacement with nonaddicting ones, such as Stadol. The use of muscle relaxant, Baclofen, which selectively works on the spinal cord, counteracts the spasm, clumsiness and tremor.


In severe brain or spinal cord injuries that result in severe crippling spasticity, the infusion pump can be very effective in the treatment of spasticity. Unfortunately, not enough infusion pumps are being used for treatment of severe head and spinal cord injuries. With the use of Baclofen in the pump, such victims of severe crippling spasticity can become mobilized and can be spared from life-threatening inactivity and bed sores.

The infusion pump has been used for treatment of severe pain. In our studies of over 400 cases of advanced RSD, over three dozen patients have been treated with infusion pump, with close to 90% success rate. Through the pump, a drip irrigation form of pain medication is introduced to the spinal fluid. The pain medication given in one month is equivalent to the amount of medication given in two to three days by mouth or by IM injection.

Infusion pump should not be mistaken with other forms of narcotic administration. The infusion pump is totally different and practically opposite to administration of narcotics in the muscle (IM), IV, by skin patch, or simply in the epidural space.

The intrathecal infusion pump (administration of the medication directly to the spinal fluid that surrounds the brain and spinal cord), provides direct access to the brain and spinal cord bypassing liver, kidney and other organs. As a result, the patient requires only 1/20 monthly dose of the narcotic to provide complete relief of pain. In addition, when the pain is optimally achieved by use of as little as 1 to 7 mg a day (usually 3mg a day) of Morphine sulfate, if the patient for other reasons has pain (such as drinking alcohol or simultaneously taking other addicting narcotics by mouth), increasing the dosage of Morphine in the spinal fluid over and above 9mg per day, causes recurrence of severe pain. This is because the system is so flooded by such a strong dose of narcotics that the brain does not form its own endorphines, and the large doses of Morphine in the pump only causes drowsiness, causes the patient respiratory trouble, but does not completely control the pain.

The above phenomenon emphasizes the importance of optimal small dose of narcotic infusion in the spinal fluid which is obviously non-addicting. When distress is violated by increasing the dosage of medicine in the pump, then it becomes like any other form of addicting narcotic administration. The patient develops severe pain due to the fact that the brain cannot form its own endorphines. If the brain manufactures its own endorphine in the face of large doses of narcotic applied in the spinal fluid, then the patient faces the risk of dying from arrest of respiration. So it becomes obvious that the infusion pump is not just another form of giving addicting medications. It works because a very small amount (usually 1/20 to 1/30 dose) of pain medication is given in the form of drip irrigation directly in the spinal fluid with complete control of pain and complete relief of symptoms and signs of RSD.


The use of proper diet, with avoidance of chocolate (phenyletholamine), hot dog, liver and sausage, and alcohol is essential in management of RSD.

I hope the articles I picked helped a little there really isn't as much out there as I wish there would be. If you have any specific questions that weren't hit on in the articles or what I wrote before this and will write after feel free to post and I will be happy to answer anything you are wanting to know.

I know my memory has changed so much and I forget things I never would have before. I have to write everything down on my calendar and if it is a good day I remember to read asked if the symptoms are the same well they are certainly similiar like the burning is there on my stomach and my back and some really not fun places too at times ouch!My skin gets real red and hot too like when you have a sunburn or a fever.I also get these nasty red lumps under the skin that itch and itch until you finally open them then they look ugly until they heal. I usually get them on my face neck or legs does this sound familiar to anyone else? My skin has also become extremely dry no matter what I put on it mainly my forehead and sides of face. It seems like RSD is messing with my skin lately. I get the chills and when I go into a flare since going full body it really feels alot like getting the flu to me. Now keep in mind we are all different yet we have our similiarities for instance you might not feel intense burning yet or you might have it as intensely as I do. RSD has no rules I've learned that much in the past 7 years. Just when you think you have it all figured out it throws you for a loop so I have found it's best to roll with the punches and laugh whenever you are up to it.Humour is what helps me survive and also to thrive as you said because it really isn't enough to just survive... I really did like that line! Thanks for sharing your outlook it was wonderful hearing it. I would have to say that I am a living breathing example that RSD can spread to your organs or as my doctor explained it to the small fibers of my bowel.Are you currently living with RSD and it is affecting your organs: then please if you can take a minute to respond, so others can learn from your experience. It is hard when there isn't alot of information out thereon a subject that we want to learn about. Also if you see something out there from a legitimate RSD site about this topic then please feel free to add it to this post.Anyone who has a comment can just add it to this post.



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From: shellie Sent: 1/24/2008 1:22 PM

I am going to print this and give it to the doctor next time I go. He said he would have to read up on it to answer if it could be effecting my heart and causing the pain and the ton of bricks on my chest and the tightness I feel most of the time.

Mylanta or 2 tums at bedtime does the trick for me no cramps or gas. I also have the "shy" bladder going on. I use a pad to help with the leak.

I had a hysterectomy vaginally they did a bladder and bowel repair back in 92 at the same time. The scar has always hurt inside if it got bumped but I got to ask does sex hurt anyone else? After were done it feels like you hit your thumb with a hammer, only inside. I try telling him it hurts and we have tried anything we can to make it better but now its to the point that it is hurting too much to try so I dodge it as much as I can and say just hold me, find a girlfriend just come back home to me. Sex also makes my intestines hurt and since they left the ovaries it makes them feel like it did when they would swell with a cyst. I'm sure if he felt it each time he would not ask that once a week. Please tell me this is just a stage and it will ease up. I really miss that time but it is hurting enough that I am starting to resent it. Sure glad you can not see my red face for asking. This is something I can not ask the doctor.

Thanks for all this great info.

Love and (((HUGS)))

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Post  byrd45 on Fri Jan 09, 2009 1:03 pm

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From: byrd45 Sent: 1/24/2008 10:37 AM
Table 1
Pain Perception

1. Somatic (simple common pain)
Parietal Cortex
2. Sympathetic (Neuropathic)

3. Bilateral Limbic System / Anterior Frontal Temporal Lobes [2]

Table 2
RSD Components

1. Sensory: Burning Pain

2. Motor: Cold Extremity Tremor/Flexor Spasm [3,4]

3. Inflammation: Swelling, Skin Rash, Bruising of Skin,

Osteoporosis, Fractures, Fluids in Joints

4. Limbic System Dysfunction

(Emotional Control Centers of Temporal and Frontal Lobes):

Insomnia, Agitation, Depression, Poor Judgment

As the condition becomes more persistent and chronic, the physician unknowingly perpetuates and aggravates the condition by the good intention of trying surgical procedures in the area affected by RSD.

The disease was first recognized by the Civil War surgeon from Atlanta (Dr. S.W. Mitchell); however, even a century later, this condition remains enigmatic, and is often diagnosed too late for successful treatment; not infrequently, it is complicated by unnecessary surgical operations, along with addicting narcotic and tranquilizer treatment. Any operation in the injured area can result in new scar formation and therefore a new source of pain. The treatment with narcotics and tranquilizers deprives the brain of it's own endogenous hormones (endorphines); this causes a new source of pain due to drug dependence. The scar of surgical procedure, added to drug dependency causes rapid deterioration; at this point, the treatment becomes the source of the disease.

Eventually, the four major manifestations of RSD evolve (see RSD Components, Table 2).The combination of a constant burning pain, which is instigated by even a simple touch (allodynia, muscle spasm and tremor, anxiety, depression and agitation, may result in a confusing, confounding and frustrating clinical picture, making the diagnosis and proper treatment quite difficult.

As a result, the source of this condition is mistaken for "psychological causes; e.g., malingering, hysteria and hypochondriasis.

In 1992, Doctor Mary E. Lynch had found no significant pre-existing psychopathology in RSD patients[5].

As the disease becomes chronic, it goes through four stages; these stages are not distinctive or clear-cut, but develop in an overlapping fashion. Stages I and II are the earliest and easiest to treat. If the disease is diagnosed and properly treated in the first six months, then stages III and IV shall be aborted. Any attempt at proper treatment, in the form of physical therapy or sympathetic block, will prevent serious complications seen in stage III and IV. (Table 3) As a result, because the classical advanced complications are not seen in partially treated patients, the clinician does not arrive at the proper diagnosis of RSD.

The staging of RSD is not as critically done on the basis of dysfunction (stage I) meaning abnormal function of the sympathetic system in the extremity, dystrophy (stage II , meaning trophic and inflammatory changes, skin changes and other signs of inflammation), atrophy (stage III, meaning usually minimal degree of atrophy in the involved muscles), or stage IV (meaning disturbance of the immune system, suicidal attempts, stroke, heart attacks, intractable hypertension and chest pain, and in some cases development of cancer). The prognosis is more related to the temporal development of the above four stages.

Table 3

Stages of RSD

Stage I: A sympathetic dysfunction with thermatomal distribution of the pain. The pain may spread in a mirror fashion to contralateral extremity or to adjacent regions on the same side of the body. In stage one, the pain is usually SMP in nature.

Stage II: The dysfunction changes to dystrophy manifested by edema, hyperhidrosis, neurovascular instability with fluctuation of livedo reticularis and cyanosis causing change of temperature and color of the skin in matter of minutes. The dystrophic changes also include bouts of hair loss, ridging, dystrophic, brittle and discolored nails, skin rash, subcutaneous bleeding, neurodermatitis, and ulcerative lesions (Fig. 5). Due to the confusing clinical manifestations, the patient may be accused of self-mutilation and even "Münchausen syndrome." All these dystrophic changes may not be present at the same time nor in the same patient. Careful history taken is important in this regard.

Stage III: Inflammation becomes more problematic and release of neuropeptides from c-fiber terminals results in multiple inflammatory and immune dysfunctions. The secondary release of substance P may damage mast cells and destroy muscle cells and fibroblasts.
Stage IV: Identifies the final stage of RSD / CRPS manifested by:

1. Failure of the immune system, reduction of helper T-cell lymphocytes and elevation of killer T-cell lymphocytes. This is in contrast to the opposite, up-regulated function of immune system in early stages.

2. The hypertension in early stages due to alpha-1 up-regulation reverses to eventual exhaustion and to the common occurrence of orthostatic hypotension in this late stage. Blood pressure changes in this stage are due to autonomic failure. The failure of the sympathetic system exaggerates the response to drugs that lower or raise the blood pressure.

3. Intractable generalized extremity and visceral edema involving the abdomen, pelvis, lungs, and extremities due to long-standing disturbance of sodium-potassium and calcium magnesium pumps usually left untreated for several years. The same organs may eventually be subject to multiple abscesses due to failure of immune function.

4. Ulcerative skin lesions.

5. High risks of cancer and suicide.

6. Multiple surgical procedures seem to be precipitating factors for development of stage IV.

This late stage is almost the flip side of earlier stages, and points to exhaustion of sympathetic and immune systems. Ganglion blocks in this stage are useless and treatment should be aimed at improving the edema and the failing immune system.

The use of addicting narcotics and benzodiazepines (tranquilizers), results in withdrawal pain every 4 to 5 hours. The use of such addicting medications puts an end to the brain manufacturing its own narcotics and BZs.

As a result, 4 to 5 hours after the administration of such medications, even though the patient does not have a new injury affecting his body, feels withdrawal pain because of the lack of endorphines and endoBZs.

The combination of the above three factors, use of ice, immobilization and addicting drugs, exaggerates the SMP (sympathetically maintained pain) due to the original minor trauma.

As the condition becomes chronic, the other aspects of this syndrome complete the clinical picture. Inflammation develops, insomnia, agitation and depression affect the patient's diurnal cycle, deprive the patient of resting well and sleeping normally at night and the end result is the full-blown picture of RSD.

The one extreme in the case of major causalgia with significant damage to the sympathetic nerve, the status 1 through 3 can develop in a matter of weeks or a few months.

On the other extreme, for example in the case of heart attack or stroke causing RSD, the stages evolve in a very slow fashion and it may take a few years before stages III and IV are seen.

The faster the stages develop, the more severe the RSD and the treatment should be applied in a more aggressive fashion.

On the other hand, even a partial or minimal treatment of chronic stages of RSD can change the clinical picture of stage III (atrophy) back to stage II or stage I. That is a good sign, but that does not mean that the patient's condition is mild just because the patient is in stage I. The more chronic the disease the more likely the persistence of the symptoms and complications even though the bed side examination shows reversal to stages I and II from stages III and IV.

If properly treated with extensive physical therapy, heat, mobilization, exercise and sympathetic nerve blocks, the success rate for full recovery in the first six months (stages I and II) is better than 80% [6].


Even in the early stages, laboratory tests such as triphasic bone scanning or thermography show a spread of the disease from one side to the other. The headache and facial pain becomes bilateral, the facial pain is complicated by dizziness, tinnitus (buzzing in the ear). In the later stages of the disease, the spread is both horizontal and vertical (e.g., from right arm to left, down the legs). The reason for this spread is the anatomical structure of the sympathetic nervous system. The majority of the Sympathetic nerve fibers do not allow the standard somatic nerve fibers, but follow the wall of the blood vessels and end up in the chain of clumps of the nerve cells, called sympathetic ganglia", which are present on each side of the spine. Input of pain into any part of these chains of nerves causes the impulse to spread both vertically and horizontally[7]. This is the main reason sympathectomy or removal of the ganglia is fraught with an extremely high percentage of failure.

This complex clinical picture of the spread of this disease has played a major role in confusing and delaying the proper diagnosis and treatment of RSD. to begin with, the injury causes such a small scar that may be barely visible. This is followed by a constant burning pain, severe neck pain and headache, spread of pain to the opposite side, followed by dizziness, fatigue, insomnia, agitation and irritability.

On this background, the patient may develop pain in the arm, tremor of the hand, may have trouble walking, spasms in the legs, and may end up in a wheelchair. It is obvious that such a patient may be viewed as a neurotic, depressed, and a hypochondriac.

The condition is further compounded by the fact that the patient has normal MRI, CAT scans, and x-rays. The pain is a physiological phenomenon, due to the disturbance of small sympathetic nerve fibers; CAT scan and MRI will not show such an abnormality. An individual who suffers a heart attack and goes to the emergency room, has a normal CAT scan and MRI in the face of a potentially fatal disease. By the time MRI is abnormal, showing fluid in the involved joints or damage to the bone due to increased circulation in the deep structures, the disease is quite advanced and easy to diagnose.

Eventually, the spasm may spread to the truncal muscles; as a result, an accordion-like jamming effect of the vertebrae evolves, with resultant bulging of the lower lumbar discs noted on MRI. This may result in unnecessary surgical operation. The RSD causes constriction of blood vessels to the hands; in this clinical picture, the patient is often mis-diagnosed as carpal tunnel syndrome, tardy ulnar nerve palsy, or thoracic outlet syndrome.

Not infrequently, such patients undergo multiple operations over the arms and cervical and lumbar spine regions, with rapid acceleration and deterioration of the RSD.

The worst risk factor, and the cardinal sin, is amputation of a limb. If the patient has any sympathetic mediated pain, amputation is going to multiply the disease by several times, due to the fact that the stump of the Amputation causes scar formation at the cut ending of the nerves with marked exacerbation of RSD in the most severe form, called "Causalgia".

Even without application, surgical procedure over the inflamed area of involvement of the RSD (such as ankle, knee or wrist), is a major aggravator of RSD which overnight changes as stage I RSD to stage III or later.

The Three areas that are most commonly and unfortunately operated on are:

1.Wrist according to the diagnosis of carpal tunnel syndrome. This has already discussed in the RSD quiz related to carpal tunnel syndrome. Simply put, carpal tunnel syndrome rarely causes RSD but in rare cases of RSD the inflammation of the soft tissue at the wrist results in a clinical picture identical to carpal tunnel syndrome (CTS). This form of carpal tunnel syndrome is the effect not the cause. It is the result of RSD rather than being the cause of RSD. In this type of CTS, the entire hand, wrist and forearm are quite hypopathic, allodynic and sensitive to touch in contrast to the true somatic carpal syndrome. In this form of RSD, treatment with nerve blocks and anti-inflammatory medications Baclofen, moist heat and Epsom salt clears up the symptoms and signs of CTS. On the other hand, surgery ends up with disastrous results.

2.The same is true in the case of so-called tarsal tunnel syndrome which is over-diagnosed and over-treated universally by the podiatrists and surgery over the tarsal tunnel on the ankle rapidly deteriorates the already existing RSD.

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RSD and Does does it affect our internal organs?

Post  byrd45 on Fri Jan 09, 2009 1:00 pm

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From: byrd45 (Original Message) Sent: 1/24/2008 9:44 AM
Hi Everyone,
In answer to Bethanna's post:
From: bethanna (Original Message) Sent: 1/22/2008 4:30 PM
I'm posting this to any one on the list that might have systemic RSD - though, Robyn, your symptoms are what moves me to ask.

What are the effects of RSD on organs? Does it destroy the organ and cause it to not function? Is it the horrific pain as in the limbs? Is it life threatening?



I would like to discuss if RSD affects our organs. What do they mean by systemic RSD and how does it affect your body. First from person experience I have been going through alot of problems myself that have been saying my RSD has spread internally or systemically. My symptoms involve my bowel,stomache,heart and thyroid. I have nausea(RSD of the bowel),extreme tiredness(thyroid),chronic constipation(thyroid and RSD of the bowel),sharp pains in my stomache(RSD of the bowel),abdomen and under my rib cage and sharp pains through my back there too(RSD of the bowel). I also had alot of gas(RSD of the bowel),pain in my neck(thyroid),trouble swallowing(thyroid),choking on food because throat would clamp closed before I would finish swallowing(thyroid),alot of burping,weight gain(thyroid),swelling,(nerves squeezing my heart they had to put me on blood pressure meds to help that problem,Thyroid is swollen they don't know why yet,from my lower abdomen to the bottom of my rib cage is swollen too from the RSD spreading to my bowel.)When I was having problems with the nerves squeezing my heart I had alot of trouble breathing and getting a deep breath. It felt like there was an elephant on my chest. It is a good thing they found out about my heart when they did a few years ago otherwise the cardiologist said things could have gotten very bad for me. If that was left like that much longer it would have led to an enlarged heart (god forbid!) so I feel real lucky and don't mind taking blood pressure pills twice a day for the rest of my life unless they find a cure. If they do some day the doctor is convinced that the nerves would go back to normal in that case. That would be wonderful gotta keep the faith.Another problem I have is when I have to go to the bathroom and have to go real bad I don't get alot of time to get there some days and other days I have to go really bad and sit down and nothing will come out for an hour or longer sometimes I am referring to urinating here. I am always slow on bowel movements and sitting for an hour was the norm for me until I was put on a better regimen from the Gastro doctor which helps keep me regular without all the cramping of what they had me on before. Now things are alot better for me thanks to them and it seems knock on wood that my problem urinating or not hasn't been doing that either lately. Maybe breaking that bad bathroom irregular cycle has helped calm down the nerves there. I think it would push me into flares when I would try so hard to go to the bathroom. Don't mean to be gross but if anyone is going through this please know there is help out there for you. I was so frustrated when I was referred to this doctor but now I am so glad I went.I also have further spread in my original area recently too. It's like the RSD has made a full circle and once it went full body a few years back I figured it would stop there or come to where things are now. In answer to your curiosity about spinal injuries yes I too have two parts of my spine injured from the day I got RSD. A disc in my lower back and three in my neck are herniated but they couldn't fix them because of the RSD. Good thing they didn't or it could have made things much worse for me.I think this is so much to take in at first but keep in mind that I have had RSD since May of 2001 and I have continued to regress because of RSD witholding treatment from me for two and a half years while they kept it tied up in court and then the judge said they had to take care of me. You always have to figure in when the person was diagnosed within the first year is best. If they were given appropriate treatment for their RSD right away. I wasn't in fact the therapy or WC doctors didn't want to admit what was wrong with me at first so I would get iced down for my therapy which is horrible for RSD. I didn't know anything about it back then I had never heard of it until someone finally diagnosed me honestly.Whenever you read anything about RSD just keep that kind of thing in mind okay it helps for your own sanity. Well didn't mean to get so far off base so lets look into what they mean by systemic RSD:
Reflex Sympathetic Dystrophy Syndrome, RSDS, is now referred to as Complex Regional Pain Syndrome, CRPS. It is a progressive disease of the Autonomic Nervous System .
RSD/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 RSD/CRPS:

1) Constant chronic burning pain.
2) Inflammation
3) Spasms-in blood vessels and muscles of the extremities
4) Insomnia/Emotional Disturbance For a more detailed explanation of the 4 Main Symptoms as well as a complete listing of the Symptoms/criteria involved in a diagnosis of RSD/CRPS please visit RSD SYMPTOMS

A more in depth explanation of RSD/CRPS is;

CRPS Type I , formerly known as RSD, 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.

CRPS TYPE II once known as Causalgia, involves definable major nerve injury. Type II .

As many as 65% of RSD/CRPS 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.

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 RSD/CRPS in every patient the diagnosis must be made by the physician based on patient history and examination. It is essential to find an RSD-educated physican to ensure an early and correct diangosis.


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. (1)

On the majority of pages on this website both types of RSD/CRPS will be referred to as RSD except where it is necessary to differentiate between the two. Otherwise it will be too confusing to continually write RSDS/CRPS Type I everytime.


RSD/CRPS is a multi-symptom condition affecting one, two, or sometimes even all four of the extremities. It can also be in the face, shoulders, back, eyes, and other areas as well. RSD/CRPS is an involvement of nerves, skin, muscles, blood vessels (causing constriction 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." INFORMATION SUPPLIED BY ORTHOPOD


It may spread from one part of the body to another regardless of where the original injury occurred; and RSD/CRPS can spread in up to 70% of the cases.(1) However, in a small number of cases (8% or less) it can become Systemic or body-wide. (1) Most often those who develop full-body or systemic RSD/CRPS had a spinal injury as the precipitating cause or as an additional injury.


ANYONE can get RSD/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 70-75% of victims are women; and affects all age groups from 3 to 103 although in recent years more and more patietns in their teens seem to be developing RSD/CRPS. (2) The exact number of patients is unknown and estimates can vary widely.


Until late 2005 there was no way to test for or confirm Type CRPS Type I, formerly called RSD, and often times patients were disbelieved because of that. Then new information became available and hope for a possible test is on the horizon. More research needs to be done but it is a step in the right direction.










2 - According to a National Survey completed by American RSDHope of 809 RSD Patients.

RSD Information

Dysautonomia is Stage 3 CRPS and/or Stage 4 RSD people who have CRPS type III. This disease is considered fatal because of the side affects of the disease.

The initial's stand for Complex Regional Pain Syndrome type II, however some of you may know this disease or disorder as Reflex Sympathetic Dystrophy Syndrome. Causalgia, to RSDS, to CRPS is to differentiate the different types of CRPS, this disease is about two and a half time's more painful than terminal cancer, it is very important to those of us with this disease to have our families and friends involved. although it is a lot to take in, you need them to be there and understand not only for emotional support but most importantly so that you are not left alone. This disease causes so many different things in our bodies. There are major organs that are affected Heart, kidneys, and lungs. Just to name a few... our blood pressure alone gets so high sometimes it tops the charts, in some cases terrifyingly low as well. A heart attack or stroke, seizures, Memory loss is not uncommon for an RSD patient. This disease causes serious complications, and also affects many other parts of the body. Such as our immune system, autonomic nervous an central nervous system, breathing, eyes, hearing, hair nails skin, muscles, bones, nerves circulatory system. This disease has been known to also cause diabetes, MS, Arthritis, Osteoporosis, to name just a few. Which I am sure you have been told by your doctor. It is important that you understand your own body as well as those who take care of you, in case you need medical attention right away. It is also very important to understand that these conditions are bought on by the RSD NOT the other way around; it is horrifying to know just what this monster of a disease can branch out into. It is also been said that RSD patients don't want their families and loved one to know how painful the disease really is because it would hurt them even more, however they do need them to believe them and understand that the pain is a constant struggle, and to support them. It is also important to understand the other names of this disease; at one point there were at least 17 different names for RSD, Many feel this is the reason it’s taken so long for doctors to diagnose this disease, before it gets to stages 3 an 4. In stage 4 RSD this part of our disease is considered to be the systemic stage or Dysautonomia.

I can find no research evidence or even anecdotal opinion from reputable authors that would indicate that RSD - even in systemic presentation - would statistically lead to a high mortality rate. Even if this were so it would remain an extremely small proportion of the RSD population. I know of only one published fatality that could be attributed to RSD - that of a young American Teenager - and NONE in the UK. Research based evidence from highly reputable Medical teams indicates that mortality in RSD is negligible.

Equally the issues of seizures and memory loss, a common enough problem experienced regularly by countless millions of Epileptics. Seizures may be easily controlled today and a 6 minute fit is by no means long - I have seen individuals fit for hours - but with ITU intervention recover to a normal state of health. As for episodes of high or low blood pressure (Hypo or Hypertension) these are easily enough to monitor and control although I do not doubt that they are very frightening at the time. Countless illness lead to episodes such as this and blood pressure control is subject to vast international research.

Dave Barton - Group Organiser of SKIP (Supporting Kids In Pain)

RSD is not a killer but, for many people, it does bring on a problem that can be life threatening… the problem of loneliness. The number of suicides among RSD sufferers is not statistically large, but suicide is probably at the root of rumours that RSD can kill. Of course, loneliness can be caused by many of life's problems, and the best treatment is friendship and caring support. If you feel weighed down by constant pain and feel that "nobody understands how I feel" you would do well to join a Support Group of find other ways of sharing your burden with people who will support and affirm you as a person. Check out the "Help Groups" pages on RSD Alert or write to one of the RSD Alert Team to share your concerns. But don't worry that the RSD itself might kill you… it won't.
Derrick Phillips - Editor of RSD Alert

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