Reflex Sympathetic Dystrophy

Researched & Compiled by Robyn, 2001                                    

“ . . . The pain of RSD is enough to drive anybody out of their mind but
      what I admire is the fact that RSD patients still keep their sanity. . . ”
                                                                               Dr H. Hooshmand, M. D., P.A.

"If Hell were a clinical medical condition, it might look something like reflex sympathetic dystrophy or RSD." 
                                                                     Tom Haederle - Johns Hopkins University

Reflex Sympathetic Dystrophy (RSD) is a somewhat rare, complicated and devastating disease.

In most cases it is developed after an injury or surgery to the extremities but it can develop for no apparent reason.  In most cases it begins in the limbs but it can spread to the rest of the body. This virtually unknown (ask anyone if they’ve ever heard of it!) and misunderstood disease is estimated to effect some six million people worldwide who have had a trauma of some kind to the extremities. A disease for which there is no known cure and little effective treatment. 

It is known by a number of names including Reflex Sympathetic Pain Syndrome, Causalgia, Complex Regional Pain Syndrome and others.  It is often misdiagnosed as any variety of ailments including Fibromialgia, Common Chronic Pain Disorder, Chronic Neuropathic Pain Syndrome and even nothing more than a common winter flu.  I have even had one physician tell me  “There’s no such thing!”   The only commonality from sufferer to sufferer seems to be that of extremely severe, excruciating pain.

For those of you in unexplained, severe pain, a warning: some practitioners  will tell you that it is all “in your head” and that you should stop searching for a diagnosis of your pain as this search is interfering with your emotional healing!  I warn you:  Do not listen to this.  If you know there is something physically wrong, don’t let it end with your family doctor ~ search until you find the cause because the only way to “overcome” this disease is with early diagnosis and treatment.  The later the diagnosis, the less chance there is of any help at all.  Unless diagnosed and treated within three months of developing symptoms (in many cases), some sufferers have reported that treatment has little or no effect or at worst the treatment makes the condition worse.

To define RSD one needs a simple understanding of the nervous system.

There are three different types of nervous “systems” controlling the body. One is the sensory nervous system which makes us aware of various stimuli including sound, touch, taste, smell, vibration, temperature and pain.  In this component of the nervous system nerve endings in the tissues become active and send chemical signals to the brain. 

There is also the motor nervous system.  This component of the nervous system allows us to respond to stimuli by prompting us to move or use our muscles by sending messages from our brain to our muscles. We can influence our response through the judgment of higher centres of the brain.

The third system is the autonomic nervous system. This system concerns itself with  maintenance of the "internal environment". The name implies that it is autonomous - kind of having a mind of its own. It is almost autonomous but it can be influenced to a certain extent by the conscious brain as well. This system controls such functioning as the beating of the heart, blood pressure, sweating and other autonomous organ activity. This system has two subdivisions: the sympathetic and the parasympathetic nervous systems and each oppose the other thus; the sympathetic system is the “fight” component of the well-known "fight or flight" response. On the “fight” end, the sympathetic system increases the internal temperature, raises the blood pressure, strengthens the protective function of the skin, makes the skin cold so that there would be no waste of temperature, makes the skin sweat excessively (so that there would be no extreme increase of the internal temperature); increases muscle metabolism, bone circulation, circulation of the brain and digestive systems. The end result is that one is ready to “fight”. On the other hand, is the parasympathetic system; the system that is the balancer of the autonomic nervous system.  The parasympathetic system drops the blood pressure, slows down the pulse, relaxes the muscles, and preserves energy by cutting down the calories burned in the body. As such, the parasympathetic system works in the opposite way to the sympathetic system.

Reflex Sympathetic Dystrophy is one form of disturbance of the function of the autonomic nervous system as outlined above. However, simply having a hyperactive sympathetic nervous system does not mean one has RSD. 

RSD can develop after an injury or after a surgical procedure, but only in less than 5% of cases.  Research shows approximately 4% for arm/elbow/wrist injuries/surgeries and less than 1% for leg/knee/ankle injuries/surgeries.  These injuries or surgical procedures need not be serious or life threatening ~ bumping an elbow on a table has been reported as causing RSD to develop. One particular case I know of developed for no apparent reason – no surgery, no trauma, no inciting event was reported.

RSD and it’s development is defined by the International Association for the Study of Pain as:

“A pain syndrome that usually develops after an initiating noxious event, not limited to the distribution of a single peripheral nerve, and is apparently disproportionate to the inciting event.  It is associated at some point with evidence of oedema, changes in skin blood flow, abnormal sudomotor activity in the region of the pain, and allodynia or hyperalgesia.”

Some clarification is in order here:-

-  “initiating noxious event” -  in adults RSD can develop as described above – even after a minor trauma or surgery, but this is not necessarily so.

-  “not limited to a single peripheral nerve” – this means that the pain and the disease can spread – it is not limited to the site of injury or surgery.

- “disproportionate to the inciting event” -  this is a very important feature of RSD.  The pain is disproportionate because the nerve endings and pain nerve pathways of the autonomic nervous system have become extremely sensitive and over-reactive – they have become “sensitised”.

- “oedema” – swelling, usually of the arm or leg, or part thereof.

- “changes in skin blood flow” – this means that the painful part of the body is hot or cold, or red, blue, purple or white, compared to the unaffected side.

-  “abnormal sudomotor activity in the region of pain" - sudomotor means perspiration - the affected area may perspire more or less than the uneffected area.

- "allodynia" - this means a painful response to a normally non-painful stimulus, for example,  one notices that a light touch or brushing of ones clothing against the effected area causes a painful and unpleasant sensation.

- "hyperalgesia" - this refers to an excessively painful response to a normally painful stimulus, for example, pressure against the effected region can cause extreme pain, even agony.

- extreme pain – in the effected limb or in the other extremities. Sufferers of RSD often describe the pain with words such as “horrific”  “devastating”  “ unbearable”  and  “unimaginable”.

- swelling – of the effected limb or in the other extremities. Some sufferers have enormous swelling – for example where a forearm ends up the size of a thigh or larger.

- extremes of skin temperature – in the effected limb or in the other extremities - from extremely hot and burning as if one is on fire to extremely cold and a feeling of being almost frozen.

- extremes of skin colour – mottled blue, white or red is common.

By “pre-requisite four” symptoms, it is meant that it is these four symptoms in combination that will generally lead to a diagnosis of RSD being made by the learned physician.  But as noted below, the symptoms of RSD vary markedly. 

Common symptoms endured by RSD sufferers can include memory, balance and visual disturbances as well as migraine headaches, and lancinating 'electric shock'  type of pains travelling up and down the body. These lancinating pains can be anything from a mild twitch to sharp, stabbing pains. One can also have both of these pains in addition to the “main” pain.  There may also be evidence of Parkinson’s-disease-like shaking from mild to quite severe. 

There is also a disruption to the limbic system which causes poor memory and irritability as well as insomnia.   This disruption can also lead to a condition known as lymphoedema which is a dreadful, painful, visually unpleasant development of RSD.  It is estimated that most sufferers of RSD develop this condition because of poor medical advice and treatment regimes.

Another symptom that can make any mobility extremely difficult is the lack of endurance in the muscles. An example of this would be that despite using wheelchairs or crutches for many years, these aids may, in many cases, still be used only over very short distances.  One would think that using a manual wheelchair would lead to a strong upper body and great endurance when pushing the chair.  In RSD this simply is not the case. Before my left arm became virtually unusable, and despite having used a chair for over two and a half years,  I found that I could only push it about 2 to 3 hundred metres and no further – after this my arms are beyond exhausted.  With my crutches too, I could only use these for about 10 to 20 metres and this is with partial weight bearing. With my RSD effected leg raised completely I can only go about 10 metres.  After these distances pain, cramping and exhaustion in my RSD “uneffected” arms stops me. This is one thing that Occupational Therapists need to take into account when assessing/assisting a sufferers mobility.  For many of us a motorised wheelchair is the only option that allows mobility with some semblance of comfort.

Further symptoms include a breakdown of the immune system leading to  permanent coughs and colds;  a dry, scaly rash on the skin;  dry, cracked lips and the list goes on.  There are more symptoms of RSD that one can count!

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