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« My Goal | Main | More Info on My Diagnosis of CRPS »
Monday
Jul222013

The Stages of CRPS

The following information was compiled from www.RSDHope.org


American RSDHope
Description - Four Stages of CRPS

Doctors may classify CRPS into different stages. Although now most Doctors use these simply as guidelines since the more that is discovered about CRPS the more they learn that there are no definable timetables for these stages especially with the advent of the new terminology of CRPS TYPES I and II.

For more on the problems with using stages to classify CRPS be sure to read the information that follows "THE FOUR STAGES OF CRPS" below.

THE FOUR STAGES OF CRPS

STAGE ONE: Stage one is called the acute stage and can last one to three months from onset. The first two stages are considered the best stages during which the patient can have the disease reversed and/or put into remission.

Some characteristics are warmth, coolness, burning pain, edema, increased sensitivity to touch, increased pain, accelerated hair/nail growth, tenderness or stiffness in the joint, spasms, limited mobility, some bony changes may be visible on X-Ray, abnormal amount of pain for the injury. The pain will be significantly out of proportion to the inciting injury. In this stage there is decreased sympathetic activity. For the patient, she (75% of the time a female), may feel as if her limb is on fire and is amazed when it actually feels cool to the touch, this is due to the lack of blood flow to the extremities.

STAGE TWO: Stage two is called the Dystrophic Stage and can last three to six months post onset.

Pain is constant, as in stage one, and throbbing, burning, aching, crushing in nature and is exacerbated by any stimuli. The affected limb may still be edematous (swollen with an excessive accumulation of fluid), cool, cyanotic (discolored), or mottled (different shades). Nails are brittle and ridged. Pain and stiffness persists. Muscle wasting may begin. Patients usually starts experiencing short-term memory problems, as well as increased pain from noises and/or vibrations, and other changes in the limbic system. These may include, but are not limited to, the inability to concentrate, inability to find the right word when speaking, depression, and irritability. X-Rays may reveal signs of osteoporosis. Patients may start to repeat themselves. In this stage there are also signs of increased sympathetic activity.

Some Doctors will try and use tools such as X-rays, Bone Scans, thermograms, and others during Stage 2 and Stage 3 to confirm a diagnosis of CRPS. Understand that while these tests MAY show the presence of CRPS, they are rarely conclusive and they should not be used as the sole determining factor in whether a patient does or does not have CRPS. The only positive way of diagnosing CRPS is a physical exam by a Doctor knowlegeable in CRPS. These other tests should only be used as one of many tools to aid in that diagnosis. They are also useful in tracking the progress of the disease over the course of the time.

STAGE THREE: Stage three is called the atrophic stage and can last an unlimited amount of time. Typically if a patient has CRPS for a period of 3+ years, the data seems to indicate their pain level remains fairly constant after that, barring any further incident/injury which could of course, cause an exacerbation of the disease and even a possible spread.

Pain, as usual, is typically constant but can increase or decrease, depending on the person. The CRPS may spread to other parts of the body. At this stage irreversible tissue damage may occur. Skin becomes cool, thin, and shiny. Contraction of the extremity may occur as well as atrophy of the limb (decreased joint movement). Skin atrophies (wasting away) and loss of movement or mobility may also occur. X-Rays may show marked demineralization and increased osteoporosis. At this stage many CRPS patients are not likely to be effectively treated with blocks as the percentage of SIP (Sympathetically Independent Pain) is now much greater than the percentage of SMP (Sympathetically Mediated Pain); meaning the majority of the pain signals are now originating in the brain and not at the original CRPS site where a local block would help.

Ketamine infusions of all types, HBO Therapy, Pumps and Spinal Column Stimulators are usually discussed in Stage three but there are other treatments available and more are coming all the time. The first two types of treatments are generally not covered by insurance. and the surgical treatments such as these should only be considered as a last resort as invasive procedures can cause additional problems for CRPS patients. For many of the long-term CRPS patients who enter Stage three, they simply opt not to do any surgical intervention but rather, choose to develop a long-term lifestyle that will allow them to live alongside their chronic pain; a course of medications; consistent exercise; balanced diet; physical therapy when able/needed; and for those who take the time to learn, meditation, biofeedback, and relaxation exercises.

STAGE FOUR: Most patients will never advance to Stage 4.

In this Fourth Stage, CRPS is resistant to many forms of treatment. Also in this stage there is an involvement of the inner organs. Please do not allow any Doctor to amputate the affected limb unless it is a medical necessity, such as due to gangrene for instance. While it is infrequent, amputations in an effort to eliminate the CRPS pain are still being done. This is typically ineffective and extremely destructive; physically and mentally. It not only does not work but also, in most cases, will exacerbate the CRPS/RSDS and increase the spread rate. Always ask to speak to a Doctor's other patients before undergoing any type of implant or surgical procedure. Educate yourself on the internet. Talk to other patients. In the end, YOU are most responsible for what happens to your body. It is the only body you get, so treat it with the utmost care. You deserve first class care always!

THE PROBLEMS WITH STAGES

While being able to divide patients into neatly defined stages is seen as a plus for some diseases, it has always presented a problem for Doctors who are trying to make a diagnosis for CRPS and for patients who are trying to understand it, for the following reasons:
Most patients have symptoms from multiple stages at the same time making a definitive diagnosis difficult.
Stage 1 and Stage 2 can sometimes be very brief, often less than a few months, and few patients are diagnosed within those first few months.
Depending on which Type of CRPS you have, you may not develop many of the symptoms listed for each of the stages, again making for a confusing diagnosis.
Some patients may never advance to Stage 3 and only a very few patients will ever advance to Stage 4.
It may be difficult to determine your stage due to the combination and/or lack of symptoms.
A better benchmark of where your CRPS is may be mapping your percentages of SMP and SIP over a period of months. CRPS is a progressive disease, meaning it advances over time. Placing a patient into a clearly defined Stage with a highly fluid disease just doesn't make medical sense.
Not all Doctors even agree on the existence of a Fourth Stage.
CRPS is an evolving and constantly changing disease. The symptoms you have today may not be the symptoms you have next week, depending on how your body is reacting to the weather, your overall stress levels, your current medication, the time of day, your living conditions, the time of year, where you live, your stress level at home, the amount of sleep you have been getting, your reaction to your last medical treatment, where you are in the stage of the disease, etc. This makes it even more difficult for even the most knowledgeable Doctors to correctly diagnose and treat the disease. One more reason why the patient needs to educate themselves as much as possible.
Don't assume your Doctor knows everything there is to know about CRPS and especially about your individual case. It is a very difficult disease to treat.

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Reader Comments (2)

Sending you a TON of love and prayers to get through this. What stage has your Dr. said you are in at this point? XOXOXXO

July 22, 2013 | Unregistered CommenterCourtney

Hello Courtney!
I am somewhere between 3-4. With the loss of use in my left leg, and decline now in my right leg, 30% function in right arm, it has already spread. It's also passed the usual time frame of having the option to reverse the disease, so we are taking a long shot at physical therapy but gotta do it.

That said,here is what they say about using stages to define where one is at with it. Tons of hugs to you xo

THE PROBLEMS WITH STAGES

While being able to divide patients into neatly defined stages is seen as a plus for some diseases, it has always presented a problem for Doctors who are trying to make a diagnosis for CRPS and for patients who are trying to understand it, for the following reasons:
Most patients have symptoms from multiple stages at the same time making a definitive diagnosis difficult.
Stage 1 and Stage 2 can sometimes be very brief, often less than a few months, and few patients are diagnosed within those first few months.
Depending on which Type of CRPS you have, you may not develop many of the symptoms listed for each of the stages, again making for a confusing diagnosis.
Some patients may never advance to Stage 3 and only a very few patients will ever advance to Stage 4.
It may be difficult to determine your stage due to the combination and/or lack of symptoms.
A better benchmark of where your CRPS is may be mapping your percentages of SMP and SIP over a period of months. CRPS is a progressive disease, meaning it advances over time. Placing a patient into a clearly defined Stage with a highly fluid disease just doesn't make medical sense.
Not all Doctors even agree on the existence of a Fourth Stage.
CRPS is an evolving and constantly changing disease. The symptoms you have today may not be the symptoms you have next week, depending on how your body is reacting to the weather, your overall stress levels, your current medication, the time of day, your living conditions, the time of year, where you live, your stress level at home, the amount of sleep you have been getting, your reaction to your last medical treatment, where you are in the stage of the disease, etc. This makes it even more difficult for even the most knowledgeable Doctors to correctly diagnose and treat the disease. One more reason why the patient needs to educate themselves as much as possible.
Don't assume your Doctor knows everything there is to know about CRPS and especially about your individual case. It is a very difficult disease to treat.

July 22, 2013 | Registered CommenterFried Nerves and Jam

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