By Ed Coghlan.
November is CRPS Awareness Month.
CRPS/RSD is a chronic neuro-inflammatory disorder. 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. And in all candor, that number may be much higher.
If you or a loved one, have CRPS you know it’s a very difficult disease to manage.
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.
If you have CRPS, please send us a note (firstname.lastname@example.org) and share your story.
Quite frankly, diagnosing CRPS is a problem because a lot of doctors think it may be something else or just haven’t been exposed to it to know what to look for.
The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) is trying to change that. RSDSA provides support, education, and hope to all affected by the pain and disability of CRPS/RSD.
CRPS generally follows a musculoskeletal injury, a nerve injury, surgery or immobilization. The National Pain Report’s Katie O’Leary is an example—she was a college athlete who was injured.
Her stories about her journey have been some of our best-read stories on NPR. Here are some examples.
Here are the telltale signs and symptoms of CRPS:
- 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 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.
As the disease is more accurately predicted, CRPS is projected to be the second-fastest growing application of spinal cord stimulators in the market. In case you’re wondering, failed back surgery syndrome (FBBS) is still the leading reason that people decide on spinal cord stimulation.
A reminder, if you have CRPS and want to leave a comment about what you need to in order to live with the syndrome, let us know.