Here are some facts:
Reflex Sympathetic Dystrophy Syndrome (RSD) is also known as Complex Regional Pain Syndrome (CRPS). RSD/CRPS is a multi-symptom, multi-system, syndrome usually affecting one or more extremities, but may affect virtually any part of the body. Although it was clearly described 125 years ago by Drs. Mitchell, Moorehouse and Keen, RSD/CRPS remains poorly understood and is often unrecognized.
The best way to describe RSD/CRPS is in terms of an injury to a nerve or soft tissue (e.g. broken bone) that does not follow the normal healing path. The development of RSD/CRPS does not appear to depend on the magnitude of the injury (e.g. a sliver in the finger can trigger the disease). In fact, the injury may be so slight that the patient may not recall ever having received an injury. For reasons we do not understand, the sympathetic nervous system seems
There is no single laboratory test to diagnose RSD/CRPS. Therefore, the physician must assess and document both subjective complaints (medical history) and, if present, objective findings (physical examination), in order to support the diagnosis. There is a natural tendency to rush to the diagnosis of RSD/CRPS with minimal objective findings because early diagnosis is critical. If undiagnosed and untreated, RSD/CRPS can spread to all extremities, making the rehabilitation process a much more difficult one. If diagnosed early, physicians can use mobilization of the affected extremity (physical therapy) and sympathetic nerve blocks to cure or mitigate the disease. If untreated, RSD/CRPS can become extremely expensive due to permanent deformities and chronic pain. There are no studies showing that RSD/CRPS affects the patient's life span. The potential exists for long-term financial consequences. At an advanced state of the illness, patients may have significant psychosocial and psychiatric problems, they may have dependency on narcotics and may be completely incapacitated by the disease. The treatment of patients with advanced RSD is a challenging and time-consuming task.
If one can demonstrate major nerve damage associated with the development of RSD/CRPS symptoms, the condition is called complex regional pain syndrome (CRPS) type II or causalgia. Generally, causalgia provides more objective evidence of disease due to neurological changes (numbness and weakness).
The terms complex regional pain syndrome (CRPS) type I and type II have been used since 1995, when the International Association for the Study of Pain (IASP) felt the respective names reflex sympathetic dystrophy and causalgia were inadequate to represent the full spectrum of signs and symptoms. 1-8 The term "Complex" was added to convey the reality that RSD and causalgia express varied signs and symptoms. Many publications, particularly older ones, still use the names RSD and causalgia. To facilitate communication and understanding the designation RSD/CRPS is generally used throughout these practice guidelines. The principles applicable to the diagnosis and management of RSD are similar to those principles applicable to the diagnosis and management of causalgia.
To make the early diagnosis of RSD/CRPS, the practitioner must recognize that some features/manifestations of RSD/CRPS are more characteristic of the syndrome than others, and that the clinical diagnosis is established by piecing each bit of the puzzle together until a clear picture of the disorder emerges. Often the physician needs to rule out other potentially life-threatening disorders that may have clinical features similar to RSD/CRPS, e.g. a blood clot in a leg vein or a breast tumor spreading to lymph glands can cause a swollen, painful extremity. Indeed, RSD/CRPS may be a component part of another disease, (e.g. a herniated disc of the spine, carpal tunnel syndrome of the hand, heart attack). Thus, treating RSD/CRPS will often be directed to treating clinical features rather than a well defined disease. When RSD/CRPS spreads the diagnosis can be more complicated. For example, if it spreads to the opposite limb, it may be more difficult to establish a diagnosis because there is no normal side (control) to compare for objective findings. On the other hand, the spreading of RSD/CRPS symptoms may actually facilitate the diagnosis of RSD/CRPS because spreading symptoms is a characteristic of the disorder.
The diagnosis of RSD/CRPS can be made in the following context. A history of trauma to the affected area associated with pain that is disproportionate to the inciting event plus one or more of the following: I have 95% of these symptoms. I do not have contractions of limbs, I do not have swelling, and my nails do not grow faster quite the opposite.
It is a hard thing to live with. I am 44 years old and I never thought I would be using a walker and cane or be in severe pain 24/7.
I go to a pain Dr on June 11th, for a second opinion on a spine stimulator or a pain pump. I need one implanted the spine stimulator really scares, but I will see what he has to say.
I hope this gives you all some insight into my disorder I will be checking into some fundraisers for the RSD organization.
God Bless you all!!
- Abnormal function of the sympathetic nervous system.
- Movement disorder.
- Changes in tissue growth (dystrophy and atrophy).
Clinical Features of RSD/CRPS
- Pain – The hallmark of RSD/CRPS is pain and mobility problems out of proportion to those expected from the initial injury. The first and primary complaint occurring in one or more extremities is described as severe, constant, burning and/or deep aching pain. All tactile stimulation of the skin (e.g. wearing clothing, a light breeze) may be perceived as painful (allodynia). Repetitive tactile stimulation (e.g. tapping on the skin) may cause increasing pain with each tap and when the repetitive stimulation stops, there may be a prolonged after-sensation of pain (hyperpathia). There may be diffuse tenderness or point-tender spots in the muscles of the affected region due to small muscle spasms called muscle trigger points (myofascial pain syndrome). There may be spontaneous sharp jabs of pain in the affected region that seem to come from nowhere (paroxysmal dysesthesias and lancinating pains).
- Skin changes - skin may appear shiny (dystrophy-atrophy), dry or scaly. Hair may initially grow coarse and then thin. Nails in the affected extremity may be more brittle, grow faster and then slower. Faster growing nails is almost proof that the patient has RSD/CRPS. RSD/CRPS is associated with a variety of skin disorders including rashes, ulcers and pustules. 9 Although extremely rare, some patients have required amputation of an extremity due to life-threatening reoccurring infections of the skin. Abnormal sympathetic (vasomotor changes) activity may be associated with skin that is either warm or cold to touch. The patient may perceive sensations of warmth or coolness in the affected limb without even touching it (vasomotor changes). The skin may show increased sweating (sudomotor changes) or increased chilling of the skin with goose flesh (pilomotor changes). Changes in skin color can range from a white mottled appearance to a red or blue appearance. Changes in skin color (and pain) can be triggered by changes in the room temperature, especially cold environments. However, many of these changes occur without any apparent provocation. Patients describe their disease as though it had a mind of its own.
- Swelling - pitting or hard (brawny) edema is usually diffuse and localized to the painful and tender region. If the edema is sharply demarcated on the surface of the skin along a line, it is almost proof that the patient has RSD/CRPS. However, some patients will show a sharply demarcated edema because they tie a band around the extremity for comfort. Therefore, one has to be certain that the sharply demarcated edema is not due to a previously wrapped bandage around the extremity.
- Movement Disorder - Patients with RSD/CRPS have difficulty moving because they hurt when they move. In addition, there seems to be a direct inhibitory effect of RSD/CRPS on muscle contraction. Patients describe difficulty in initiating movement, as though they have "stiff" joints. This phenomena of stiffness is most noticeable to some patients after a sympathetic nerve block when the stiffness may disappear. Decreased mobilization of extremities can lead to wasting of muscles (disuse atrophy). Some patients have little pain due to RSD/CRPS but instead they have a great deal of stiffness and difficulty initiating movement.7 Tremors and involuntary severe jerking of extremities may be present. Psychological stress may exacerbate these symptoms. Sudden onset of muscle cramps (spasms) can be severe and completely incapacitating. Some patients describe a slow "drawing up of muscles" in the extremity due to increased muscle tone leaving the hand-fingers or foot-toes in a fixed position (dystonia). Patients with such seemly bizarre movements might be inaccurately diagnosed with a psychogenic movement disorder. Additionally, the fact that quite extreme behavioral changes often follow rather trivial injuries in patients with RSD/CRPS, this observation might contribute to the perception that the patient suffers from a psychogenic disorder as well.
Specific diagnostic criteria have been established for the diagnosis of psychogenic movement disorders in cases involving RSD/CRPS. 10 Unfortunately, physicians sometimes fail to follow these diagnostic guidelines and carelessly report a "psychogenic" disorder. 11 This misdiagnosis can be devastating to the patient and can lead to delaying urgent medical care.
A clinical test sometimes used to demonstrate that a patient is faking muscle weakness is called "give away weakness". This test is NOT a reliable indicator of a psychogenic movement disorder. Patients with RSD/CRPS will give away when a force is applied to their extremity because of pain. Also, because patients with RSD/CRPS have difficulty sustaining muscle contraction, they will give away as well.
- Spreading Symptoms
- A "continuity type" of spread where the symptoms spread upward from the initial site, e.g. from the hand to the shoulder.
- A "mirror-image type" where the spread was to the opposite limb.
- An "independent type" where symptoms spread to a separate, distant region of the body. This type of spread may be related to a second trauma.
- Initially, RSD/CRPS symptoms are generally localized to the site of injury. As time progresses, the pain and symptoms tend to become more diffuse. Typically, the disorder starts in an extremity. However, the pain may occur in the trunk or side of the face. On the other hand, the disorder may start in the distal extremity and spread to the trunk and face. At this stage of the disorder, an entire quadrant of the body may be involved. Maleki et. al. recently described three patterns of spreading symptoms in RSD/CRPS: 12
- Bone changes – X-rays may show wasting of bone (patchy osteoporosis) or a bone scan may show increased or decreased uptake of a certain radioactive substance (technecium 99m) in bones after intravenous injection.
- Duration of RSD/CRPS – The duration of RSD/CRPS varies, in mild cases it may last for weeks followed by remission; in many cases the pain continues for years and in some cases, indefinitely. Some patients experience periods of remission and exacerbation. Periods of remission may last for weeks, months, or years.
- Onset of severe, pain limited to the site of injury
- Increased sensitivity of skin to touch and light pressure (hyperasthesia).
- Localized swelling
- Muscle cramps
- Stiffness and limited mobility
- At onset, skin is usually warm, red and dry and then it may change to a blue (cyanotic) in appearance and become cold and sweaty.
- Increased sweating (hyperhydrosis).
- In mild cases this stage lasts a few weeks, then subsides spontaneously or responds rapidly to treatment.
- Pain becomes even more severe and more diffuse
- Hair may become coarse then scant, nails may grow faster then grow slower and become brittle, cracked and heavily grooved
- Spotty wasting of bone (osteoporosis) occurs early but may become severe and diffuse
- Muscle wasting begins STAGE III
- Marked wasting of tissue (atrophic) eventually become irreversible.
- For many patients the pain becomes intractable and may involve the entire limb.
- A small percentage of patients have developed generalized RSD affecting the entire body
Stages of RSD/CRPS:
The staging of RSD/CRPS is a concept that is dying. The course of the disease seems to be so unpredictable between various patients that staging is not helpful in the treatment of RSD/CRPS. Not all of the clinical features listed below for the various stages of RSD/CRPS may be present. The speed of progression varies greatly in different individuals. Stage I and II symptoms begin to appear within a year. Some patients do not progress to Stage III. Furthermore, some of the early symptoms (Stage I and II) may fade as the disease progresses to Stage III. The following stages are presented in these guidelines merely for historical significance.
Swelling tends to spread and it may change from a soft to hard (brawny) type