This page isn’t public yet… It’s a place to collect my thoughts and research and ramblings about my journey since being diagnosed with CRPS.
CRPS/RSD is a chronic nerve disorder characterized by inflammation and severe pain. It is classified as a rare disorder by the United States Food and Drug Administration. However, up to 200,000 individuals experience this condition in the United States, alone, in any given year.
CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain in CRPS is measured as one of the most severe conditions on the McGill University Pain Scale, worse for some than childbirth, cancer, and even amputation.
CRPS generally follows a musculoskeletal injury, a nerve injury, surgery or immobilization.
The persistent pain and disability associated with CRPS/RSD require coordinated, interdisciplinary, patient-centered care to achieve pain reduction/cessation and better function.
It has been shown that early diagnosis is generally the key to better outcomes. However diagnosing CRPS/RSD is not a simple matter and many patients search for months or years for a definitive diagnosis.
It is important to know that research has proven that CRPS/RSD is a physical disorder. Unfortunately, it has not been unusual for medical professionals to suggest that people with CRPS/RSD exaggerate their pain for psychological reasons. Trust your body and continue to seek a diagnosis. If it’s CRPS/RSD, the pain is not in your mind!
CRPS/RSD Signs and Symptoms Checklist
There is no gold standard for diagnosing CRPS/RSD. If the pain is getting worse, not better, and if the pain is more severe than one would expect from the original injury, it might be CRPS/RSD.
Look for these telltale signs and symptoms:
Pain that is described as deep, aching, cold, burning, and/or increased skin sensitivity
An initiating injury or traumatic event, such as a sprain, fracture, minor surgery, etc., that should not cause as severe pain as being experienced or where the pain does not subside with healing
Pain (moderate-to-severe) associated with allodynia, that is, pain from something that should not cause pain, such as the touch of clothing or a shower
Continuing pain (moderate-to-severe) associated with hyperalgesia, that is, heightened sensitivity to painful stimulation)
Abnormal swelling in the affected area
Abnormal hair or nail growth
Abnormal skin color changes
Abnormal skin temperature, that is, one side of the body is warmer or colder than the other by more than 1°C
Abnormal sweating of the affected area
Limited range of motion, weakness, or other motor disorders such as paralysis or dystonia
Symptoms and signs can wax and wane
Can affect anyone, but is more common in women, with a recent increase in the number of children and adolescents who are diagnosed