At my appointment at the psychiatrist’s office, just before I’m ready to leave (my prescriptions clutched tightly in my fist), she stopped me.
“You describe your pain as burning pain, correct” asked Dr. M
“I feel like a fucking Phoenix.” I replied
Dr. M: “But burning, right? Any skin sensitivity or numbness?”
Me: “Yes and yes.”
Dr. M: “Excessive sweating?”
Me: Embarrassed, but I answer “Yes.”
Dr. M: “Hmmm…” (at this point I sat back down and watched her do what I knew was probably a google search). “RSD… why do I remember that? Who did I know who had that? Hmmm….”
Me: Is this something to do with my pain?
Dr. M: Proudly producing a printed out fact sheet, she proclaimed “RSD!” and rushed over to hand it to me in her funky studded heeled booties.
Reflex Sympathetic Dystrophy (RSD) Syndrome
Also known as Complex Regional Pain Syndrome (CRPS)
RSD is an older term used to describe one form of Complex Regional Pain Syndrome (CRPS). Both RSD and CRPS are nerve disorders characterized by chronic severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch. RSD is sometimes called Type I CRPS, which is triggered by tissue injury where there is no underlying nerve injury, while Type II CRPS refers to cases where a high-velocity impact (such as a bullet wound) occurred at the site and is clearly associated with nerve injury. Type II used to be called “causalgia” and was first documented over 100 years ago by doctors concerned about the pain that Civil War veterans suffered even after their wounds had healed. RSD is unique in that it affects the nerves, skin, muscles, blood vessels and bones at the same time.
Continuous, intense pain that is out of proportion to the severity of the injury (if an injury occurred) and which gets worse rather than better over time. It most often affects the arms, legs, hands or feet and is accompanied by:
- “burning” pain
- increased skin sensitivity
- changes in skin temperature: warmer or cooler compared to the opposite extremity
- changes in skin color: often blotchy, purple, pale or red
- changes in skin texture: shiny and thin, sometimes excessively sweaty
- changes in nail and hair growth patterns
- swelling and stiffness in affected joint
- motor disability, with decreased ability to move affected body part
How is RSD Caused?
RSD has no apparent cause. Initially, the condition was thought to be a malfunctioning of the sympathetic nervous system but researchers are questioning this theory. Since it is most often caused by trauma to the extremities, some conditions that can bring RSD about are sprains, fractures, surgery, damage to blood vessels or nerves and certain brain injuries.
How is RSD treated?
Physical therapy is a primary component of treatment. There also are several types of medications that can be used and sometimes elevating the affected extremity may be helpful. There also are surgical procedures that are used in some cases. Treatment needs to be individualized and treatment plans often incorporate several of these measures. Treatment if begun early, ideally within the first three months after symptoms begin, can result in remission. Early diagnosis is the key.
Is there a cure?
Not at this time, but research continues. Advances have resulted in some new and effective treatments.
While I don’t have *all* the symptoms, and the burning is more down my side and across the chest (instead of in the extremity), I do have *a lot* of the symptoms.
Plan: Find a doctor who knows what the hell this is and how to diagnose it!