Originally uploaded by rsdscrpsnews.
Many of you may be saying what the heck is that??? That is what I said when my surgeon told me I had it from my knee surgery healing wrong. I have met a man with full blown RSDS through his whole body, he live’s very near me. We are not sure what is worse, the pain and agony, or trying to explaine to people and doctors what it is and the strange looks we get.
I encourage any one of you to read this as it can happen by a simple bee sting, a sprain,a bruise and many live in pain never knowing what it is.
I can say my RSDS is in remission and has been for aver a year now. I do still suffer from the nerve damage in my whole left leg, also my knee ache’s 24/7 and I will be soon having a full leg brace on my left leg to try and get the muscle back over my knee cap as well as make my muscles stronger, if that don’t work it’s surgery again which could flare up the RSDS again. I have to be very careful as to what I do, a fall can flare it back up however I have had a few fall’s from my knee giving out and thank god no flare up.
RSDS also effect’s your memory, that is why my spelling is not so good, it’s made me a bit dyslexic and have to work very hard to re-read everything i write.
Here are some good fact’s of RSDS
What is RSD?
Reflex Sympathetic Dystrophy Syndrome (RSD) – also known as Complex Regional Pain Syndrome (CRPS) – is a chronic neurological syndrome characterized by:
severe burning pain
pathological changes in bone and skin
extreme sensitivity to touch
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. 8 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. 6 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).
Spreading Symptoms – 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: 9
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
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. 10
RSD/CRPS may present in three stages:
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.
Onset of severe, pain limited to the site of injury
Increased sensitivity of skin to touch and light pressure (hyperasthesia).
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
Swelling tends to spread and it may change from a soft to hard (brawny) type
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
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. 5
Activation of the sympathetic nervous system following an injury is part of a fright-flight response to an emergency situation. This response is very important for survival. For example, firing of sympathetic nerves causes blood vessels in the skin to contract, forcing blood deep into muscle and enabling the victim to use his muscle to get up after an acute injury and escape from further danger. Also the decreased supply of blood to the skin reduces blood loss through superficial injuries that may occur on the surface of the body. Ordinarily, the sympathetic nervous system shuts down within minutes to hours after an injury. For reasons we do not understand, individuals who go on to develop RSD/CRPS, the sympathetic nervous system appears to assume an abnormal function. Theoretically, this sympathetic activity at the site of injury could cause an inflammatory response causing the blood vessels to spasm leading to more swelling and pain. (See B, C, and D in Figure 1) The events could lead to more pain which triggers another response, establishing a vicious cycle of pain.
Laboratory Diagnostic Aids:
There is no laboratory test that can stand alone as proof of RSD/CRPS. However, there are a couple of tests (thermogram and bone scan) which can be useful in providing evidence for RSD/CRPS.
Thermogram – A thermogram is a noninvasive means of measuring heat emission from the body surface using a special infrared video camera. It is one of the most widely used tests in suspected cases of RSD/CRPS. As noted, detecting an abnormal change in skin temperature in RSD/CRPS depends on many factors. A normal thermogram does not necessarily mean the patient does not have RSD/CRPS. An abnormal thermogram may be helpful before a jury in a court of law when there are minimal objective findings for RSD/CRPS documented in the medical record. Furthermore, certain patterns of abnormal heat emission from the body (e.g. circumferential versus dermatomal changes) are more indicative of the existence of RSD/CRPS than others. The thermogram should be performed at a reputable medical facility. The quality of the test may vary among providers.
Three phase radionuclide bone scanning – the role of the 3 phase bone scan in the diagnosis of RSD/CRPS has been debated and is controversial.
Sympathetic blocks – See below under “sympathetic blocks”.
X-rays, EMG, Nerve Conduction Studies, CAT scan and MRI studies – All of these tests may be normal in RSD/CRPS. These studies may help to identify other possible causes of pain; for example, RSD/CRPS plus a carpal tunnel syndrome.
Submitted by: Sheryl Rackliff
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