Information About RSD and CRPS

WHAT IS REFLEX SYMPATHETIC DYSTROPHY? In 1993, the name of reflex sympathetic dystrophy was changed to COMPLEX REGIONAL PAIN SYNDROME (CRPS) mainly for research purposes and to avoid confusion with the many labels that have been attached to RSD in the past. CRPS type one is formerly known as RSD and CRPS type two was causalgia. CRPS type one (formerly RSD) is a debilitating disease which involves the skin, nerves, blood vessels and bone. The sympathetic nervous system reacts to a stimulus for example, an injury. Blood flow may be affected in reaction to a burn, cut, or severe temperature changes. To prevent you from further using an injured limb, the limb swells. Sometimes, and no one knows why, an abnormal or prolonged sympathetic reflex begins in a limb as reaction to a trauma. The sympathetic nerves become overactive and can cause a variety of symptoms that may cause debilitating consequences. There can be many symptoms, but the most common one is burning pain. Some of the other symptoms include: swelling temperature changes color changes diminished motor function severe sweating These symptoms usually happen in a limb but can occur in other body parts (i.e. face…)  Symptoms may vary with each individual who has CRPS type one (RSD). COMMON CAUSES OF CRPS Type 1: Trauma (often minor) i.e. soft-tissue injuries, fractures heart disease (caused by inadequate blood supply) Spinal cord disorders Cerebral lesions Infections Surgery Repetitive motion disorder (RSD) or cumulative conditions causing conditions such as carpal tunnel syndrome. In many cases, a definite cause of CRPS Type 1(RSD) has never been found. It is not known why these factors cause CRPS but there are many hypotheses that are the subject of research around the world even today. CRPS Type 2 (formerly causalgia) CRPS type two (causalgia) is defined by burning pain, allodynia, and onset usually occurs after nerve injury but it may be delayed.  The most common nerves involved are the median, sciatic, ulnar, tibial and tibia. The burning pain is constant and exacerbated by: Light, touch, stress, temperature, movement of the limb, or emotional disturbance. Abnormalities in skin temperature and blood flow may occur as well as sudomotor dysfunction. Dystrophic changes may occur in the skin, hair or nails. SPECIFIC SYMPTOMS OF CRPS The main difference between CRPS type 1 (RSD) and CRPS type 2(Causalgia) is that Type 2 is caused by a nerve injury. The symptoms of both diseases are identical. There are four cardinal signs that indicate CRPS Type 1 and 2: PAIN is constant and characterized by burning. The non-relenting pain is enhanced with every movement. SWELLING is sometimes localized, but often unrelenting, and progressive. Swelling intensifies the pain and promotes stiffness which can be the beginning of atrophy and deformity. When tissue is injured or inflamed, excess fluid enters the tissues from damaged blood vessels within these injured tissues. If the veins cannot remove all of this fluid, the part swells (edema). However this swelling is usually only temporary, because the tissues heal and the blood vessels no longer leak excessively. Swelling is one of the symptoms of RSD. Early in the course of the disease, this inflammatory process causes edema. The swelling in RSD may exist far longer than it would take normal tissue to heal because RSD: Prevents healing Causes constant inflammation May cause dilation of the arteries which will cause more fluid to leak, and May cause the veins to contract, which also prevent the normal removal of non-protein fluid from tissues. It is pretty easy to see that the edema of CRPS may last for long periods of time. STIFFNESS like swelling is progressive resulting in less motion of the joints, which again, results in increased swelling and pain.  This in turn, can produce further deformity and joint changes. DISCOLORATION indicates circulatory changes that diminish the nutrition of the tissues of the skin, ligaments, bones and tendons. The result is thin, shiny skin, pencil-like fingers and changes in ligaments. This further contributes to stiffness and pain. CRPS in the upper extremities had been classified in the following five ways, based on the location and intensity of symptoms: CLASSIFICATION EXAMPLE minor causalgia fingertip crush, localized burning, pain, swelling, stiffness and discoloration minor traumatic dystrophy result of a crush, sprain or laceration to the back of the hand which may produce pain over more than one nerve distribution shoulder-hand syndrome result of a crush, sprain or laceration to the back of the hand which may produce pain over more than one nerve distribution major traumatic dystrophy the most severe non-specific nerve injury in response to surgery, open fracture or disease which may affect the entire extremity major causalgia severe muscle reduction appearing as early as one week following trauma to a major mixed nerve (most commonly the median nerve) often affecting the entire extremity PHILOSOPHY CRPS is frequently dismissed by health professionals for many reasons including: They don't understand the diagnosis and/or they are not familiar with the disease. They understand the diagnosis but lack experience in how to treat it properly. Many think that the patient is pretending to be ill. CRPS is thought to be hopeless and there is no cure. (There is hope!) CRPS is purely psychological and that it is not a medical condition, i.e. "It's all in your head". (This is a myth.) Many people who work within the health care system dread accepting a patient with CRPS because effective treatment requires an ongoing, almost daily assessment of the condition to develop the proper regimen. It is far too time consuming for most doctors / clinics to adequately care for CRPS patients. Due to the nature of CRPS, the condition can quickly change for better or worse for reasons that are not fully understood. Therefore it is necessary to schedule evenly spaced treatment sessions in order to benefit the patient. The health care provider must address the plan of care very carefully once the diagnosis is made and must thoroughly customize therapy for each patient. All individual characteristics (psychological, social, and physiological) must be taken into account during therapy and treatment of this disease / syndrome. Communication between the family members, health professionals, and the patient must be clear, ongoing and become well established. It is common for the patient to have failed in a previous program if a positive, creative, caring relationship was not established. If either the patient or the therapist senses a communication problem, it is far better to acknowledge that another clinician may be of greater benefit to the patient's progress or to get open communication as soon as possible. DIAGNOSIS Diagnosis is determined through X-rays, three phase bone scan, skin tests, joint fluid analysis, and thermo graphic studies. Sometimes the phentolamine test is used. Thermography is more sensitive than any other diagnostic tool when diagnosing CRPS according to Dr. H. Hooshmand. He states that diagnosing CRPS without thermography is like diagnosing a heart attack without an EKG. It should be noted that the CT scan, EMG, and MRI studies may be normal during the first stage of CRPS. Along with the tests, signs and symptoms of CRPS are taken into account. All the pieces of the puzzle must fit to render a proper diagnosis. NOTE: In some parts of the US, thermography studies are available. Some doctors are used to dealing with them to see the actual heat related changes, while other doctors are still opposed to them because they don’t have all the information to know how valuable they can be when working with CRPS as a diagnostic tool. We are trying to get better diagnostic tools which will mean earlier diagnosis of CRPS and faster, more efficient treatment. WHAT CAN BE DONE??? In the first place, the task is to eliminate or treat all possible causes. If there is no known cause, or if with the removal of the cause, the symptoms do not satisfactorily disappear, then there are only the symptoms of CRPS to be treated. SUCCESSFUL TREATMENT OF CRPS is dependent on: Early diagnosis. If diagnosed early, the prognosis is very good. Begin treatment of the underlying cause, if there is one. If not, then focus on the treatment of the CRPS process. Effective sympathetic blocks by blocking nerve impulses with anesthetic agents used in severe pain. Blocks may provide permanent or temporary relief. Sustained physical therapy to maintain flexibility, strength and range of motion. No use of the limb can result in atrophy and eventually not being able to use the limb. Progressive management techniques, if necessary for example, biofeedback to control pain and blood flow, pain management techniques, counseling, etc. MAKING CIRCUMSTANCES FAVOURABLE It is the task of the practitioner to give advice concerning the limits of the patient's endurance. The outcome of the treatment is not only in the hands of the doctor or therapist but also in the hands of the patient him/herself. Listening and following advice regarding the stress applied, in relation to the current stress tolerance, (of the affected extremity) becomes a problem that reoccurs in treatment. The patient and the doctor can work together towards the common goal and good of the patient’s outcome. Too much or too little exercise of the arm or leg is not good. It often requires an adjustment of lifestyle and sensible handling of the burden of the affected arm or leg. Rehabilitation is appropriate and must be ongoing. One must make the circumstances for recovery as favourable as possible. Due to the mysteries surrounding CRPS, problems can arise concerning the patient's disabilities, social functioning, employment, relationships, and the environment. These problems also need to be addressed. REHABILITATION As part of the treatment, if recovery fails to materialize, and if the patient is limited by circumstances in everyday life i.e. getting around, then special steps may be necessary. A referral to a rehabilitation specialist is always sensible in this case. We know that a minority of CRPS patients will be left with disabilities and that treatment may be insufficient for them. Patients and doctor(s) must keep an eye on the treatment, its progress and make changes if necessary. If recovery is complete, people can, in principle, function fully again. Even with incomplete recovery, work is often possible but one must take into account chronic pain, and the decreased ability to bear weight. THE SECOND OPINION For the patient, there is always the possibility of asking for a second opinion. This should be done in consultation with the doctor, but permission is not necessary. A second opinion certainly does not mean that the doctor who gives it will then begin treating the patient. However, a second opinion is reasonable in cases of CRPS. RSD NETWORKS Complex Regional Pain Syndrome is an illness that can truly disrupt people's lives. Recovery may take a long time. If recovery does not seem possible, permanent disability can be the result. Patients often feel misunderstood and unable to cope with specific problems in their immediate environment.  If this happens it is extremely important to reach out to others that have CRPS or consider seeking help from a licensed therapist.

Please forward this information to your friends and others to keep it going.  This is the only way that we will get the word out on CRPS!  I need YOUR help to reach as many people as possible - to try to reach the goal of raising a total of $1Million.  Yes, I know this will take time, but it is greatly needed for research on CRPS in the US and to work with the FDA to get treatments approved that are already working & approved in other countries like Germany.  Please contact me at:
Traci Patterson
14242 Raintree Rd.
Tustin, CA 92780