After my last post where I offered FAQ’s on CRPS, I was contacted by Victoria Abbott-Fleming. She is the founder of Burning Nights CRPS Support, a non-profit foundation in the United Kingdom. Victoria thanked me for writing about my experience with CRPS and offered the use of the infographic she created with more useful information on diagnosis and treatment of this disease. Take a look at the Burning Nights website and learn more about Victoria’s story and her charity at http://www.burningnightscrps.org/sufferers/crps-rsd-treatments.
You may have heard I’ve been on Sabbatical since February 1, 2016. I decided I needed time to adjust to the diagnosis of CRPS in my foot and consider how to continue my work. I am committed to writing during this time, blogging and beginning a draft on a new book.
I get a lot of questions about how I’m doing, what CRPS is, and why I don’t seem to be getting any better. CRPS is not common, so I’ve created a Q&A here for you.
Let me know if you have other questions!
Q: What is CRPS or RSD?
Complex Regional Pain Syndrome (formerly known as Regional Sympathetic Dystrophy or RSD) is a chronic nerve disorder characterized by inflammation and severe pain. 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.
In addition to severe pain, sufferers may experience muscle spasms or tremors, increased sensitivity to even light touch, muscle atrophy, increased sweating, color and/or temperature changes in the skin, altered hair and nail growth. Patients may also experience many internal manifestations such as hoarseness, sensitivity to light and sound, digestive issues, bladder problems, irregular heart rhythms, gynecologic issues, memory loss and compromised immune system functioning.
Once CRPS has progressed in one area, it can move to other parts of the body.
Q: What causes CRPS?
CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma, such as a bad sprain, broken bone, surgery, or less frequently, something as minor as being stuck by a needle. The nerves misfire, sending constant pain signals to the brain.
Q. Who is most susceptible to getting RSD/CRPS?
A. Women get the disorder about four times more often than men. There is no age limitation – patients range from the very young to the elderly.
Some theories suggest a genetic predisposition for the disorder. It is not uncommon to see families with more than one member who suffers from CRPS.
Q: How common is CRPS?
CRPS is considered a rare disorder by the U.S. FDA with 2-5% of people (1 – 5 million) in the United States being diagnosed. However most experts believe the condition is under-diagnosed and attributed to other diseases.
Q. When I read about CRPS, it almost sounds like fibromyalgia. How do they compare?
A. Many experts believe fibromyalgia is really a form of CRPS. Fibromyalgia and CRPS have many similarities: Both involve serious pain and mostly afflict women. However, CRPS is far more involved with more intense pain levels and internal organ manifestations.
Q. If so many people have CRPS, why haven’t I heard more about it?
A. CRPS has no national spokesperson and research funding is limited. Furthermore, because the disease is poorly understood, the chronic pain from RSD/CRPS may be mistaken for pain from other physical or psychological conditions. This leads to a decrease in accurate diagnoses.
Q. How is RSD/CRPS diagnosed?
A. As with most medical conditions, your doctor will take a comprehensive history and perform a physical exam. Conventional testing such as x-ray, CAT scan and MRI will serve only to eliminate other possible disorders but will not confirm the diagnosis of CRPS. Nuclear bone scans, once though to be a diagnostic aid have not proven useful.
Thermography or Infrared imaging shows the sympathetic dysfunction and identify the disorder. This test is contact-free and painless making it ideal for a pain-afflicted individual.
Clinicians use the mnemonic “COLDER” to aid the diagnosis of painful diseases. They will ask the patient to describe the Character, Onset, Location, and Duration of the painful symptoms, as well as what might Exacerbate or Relieve their pain.
With CRPS the description might look like this:
Character: Sharp, burning, spasming
Exacerbation: Touch, activity
Relief: Elevation, narcotics
Q. Is the condition curable?
A. No. Many diseases are not “curable” but are treatable and controllable. This is the goal of treatment in CRPS – to control the dysfunction and facilitate as normal a lifestyle as possible.
Q. What about treatment?
A. There are a number of treatment options with varying degrees of success for CRPS patients. Physical therapy can be helpful in the early stages. However, the patient should be cautioned to be extremely careful in their choice of therapy because excessive or incorrect therapy can be quite harmful.
Many also use medications to treat the symptoms. Medications include anti-seizure drugs, muscle relaxants, anti-inflammatory agents and pain medicines.
Interventional treatments include nerve block injections, ketamine infusions and spinal cord stimulator implants. Some doctors might recommend a sympathectomy, or cutting of the nerve in the affected limb, but research has shown this treatment is not effective and can cause the disease to move to another part of the body.
Some recommend dietary changes with the goal of reducing pain and other symptoms. Adjusting the diet to exclude gluten and other highly inflammatory foods has been successful for some.
Alternative treatments including prayer, meditation, and Reiki have not been researched but can offer comfort and stress relief to patients.
Additionally, a positive attitude and support from family and friends leads to better outcomes.