You are likely here at the RSDSA website because you or a loved one are experiencing unexplained moderate-to-severe pain and are trying to find the cause. Perhaps a Google search of the symptoms led you to this page as you may have already visited one or more physicians.
A physician may have suggested that your symptoms could possibly be CRPS, Complex Regional Pain Syndrome, or RSD, Reflex Sympathetic Dystrophy, but that they do not specialize in this condition. You are on a journey for a concrete diagnosis. We can help.
First, you may or may not have CRPS/RSD. There are a number of conditions that have serious, chronic pain as a symptom, along with others that are also present in CRPS/RSD. Here you can learn more about this condition and its symptoms to help you and your doctor rule it in, or rule it out.
What is CRPS/RSD?
CRPS/RSD is a chronic neuro-inflammatory disorder. It is classified as a rare disorder by the United States Food and Drug Administration (FDA). 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 is measured as one of the most severe on the McGill University Pain Scale.
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!
Making the Diagnosis
There is no single diagnostic tool for CRPS/RSD. Physicians diagnose it based on patient history, clinical examination, and laboratory results. Physicians must rule out any other condition that would otherwise account for the degree of pain and dysfunction before considering CRPS/RSD.
Early diagnosis and appropriate treatment offer the highest probability of effective treatment and possible remission of CRPS/RSD.
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
Please keep in mind that this information is not intended as medical advice, nor is it a substitute for a diagnosis by a qualified, medical professional. Please feel free to share the information with your physician(s). You may also feel free to contact us with any questions you might have about CRPS/RSD and how to find qualified medical assistance based on recommendations from our community.