Chronic Regional Pain Syndrome
Have you been diagnosed with “Chronic Regional Pain Syndrome (CRPS)”? The purpose of this page is to help you understand what this diagnosis means. As is the case with many medical diagnoses, a diagnosis of CRPS is not based on singular test with a crystal clear, black and white result. It is not as straight forward as it is to, for example, have a blood culture taken to test for and diagnose a bacterial infection. The diagnosis of CRPS is based on your medical history, an analysis of the events leading up to the onset of your pain and an analysis of your symptoms and symptom behaviour over time. Many CRPS signs and symptoms can exist independently from each other, and independently from the diagnosis of CRPS.
It’s worth stating all this because it is important to understand that a “diagnosis” of CRPS is always a little bit grey around the edges… there do exist a few “classical” clinical presentations that tick all the diagnostic criteria, but very often there is a great deal of overlap between chronic pain conditions that qualify as CRPS, and those that do not.
CRPS is basically a label used to describe a cluster of symptoms. Attaching diagnostic labels to clusters of symptoms is a tricky thing… it helps researchers to plan and carry out more studies so that we can learn more. But the downside is that a diagnostic label can be problematic for you, the patient. It is easy for the worst features of a diagnosis to become the most commonly known features. The corollary is that the popularly or widely held understanding of a prognosis for a given condition can become skewed towards the worst case scenario. Within the context of CRPS, the risk is that the prognosis is popularly understood as a condition for which a lifetime of pain and and intractable suffering is a fait accompli. We know that this is not the case.
We know that most young people who are diagnosed with CRPS completely recover, while patients of all ages do much better with early education and treatment, than those who do not receive early interventions. We also know that pessimism with regards to the prognosis of persistent pain, is associated with passive coping and higher pain scores. So there is value in taking steps to help sustain, and even improve your optimism with regards to your prognosis. I encourage you read widely and learn as much as you can about CRPS. This will help ensure that your level of optimism reflects what is most likely to happen you, as opposed to the worst case scenario, which less likely to applies to you.
In my view, the key features of the diagnosis of CRPS is the acknowledgement that you;
- are experiencing pain, usually in a single arm or leg, that was not initially associated with any obvious precipitating injury
- you are experiencing pain that is disproportionately high relative to what might be commonly described as “normal” for a given precipitating injury
- you are experiencing pain that has outlasted the expected healing time for a given injury
- you have increased sensitivity in the affected area, such that even light touch or contact can be painful
The “classical” symptoms and clinical features that tend to lead to a diagnosis of CRPS include;
- skin colour changes to blotchy, blue, purple, pale, or red colour
- swelling of the affected limb
- abnormal sweating pattern in the affected area or surrounding areas
- changes in nail and hair growth patterns of the affected limb
- pain in an entire arm or leg, even though any precipitating injury might have been only to a finger or toe.
- pain that spreads over time to the opposite extremity
- decreased ability to move the affected body part
- abnormal movement in the affected limb- a fixated position, tremors in or jerking of the affected limb.
There are many people suffering from longstanding pain, whose symptoms do not fit neatly within the classical presentation of CRPS. The good news is that you don’t need a clearly defined diagnosis in order to take steps towards resolving, or at least coping better with your pain. For those of you who have been diagnosed with CRPS, I think it is important to keep in mind that the diagnosis doesn’t determine your outcome. It really is only a label used to describe a cluster of symptoms that tend to manifest when there is something amiss in your body’s nervous system physiology.
Exactly what it is amiss, is the question that many researchers are hard at work trying to answer. It does not appear that the symptoms of CRPS specifically, or persistent pain generally, are caused by a singular or discrete injury or damage to any particular part of your nervous system. Rather, it seem more likely that when such symptoms emerge, the “problem” is multifactorial and is associated with altered nerve cell signaling and sensitivity in brain, spinal cord and nerves. That is quite a mouthful of a sentence… Unfortunately, it is tricky to state it in simpler terms. We know that sometimes these changes are triggered by an injury, and that sometimes they occur in the absence of any identifiable trigger. We also know that improving one’s understanding of pain physiology is associated with improved pain outcomes. So, the first step to resolving your pain may lie in a decision to learn more about how pain works.