Managing painful condition achieved in a variety of ways

I sustained a ruptured disc from shoveling snow and then underwent a microdiscectomy, after which I developed severe nerve symptoms.

It took me years to get a correct diagnosis: I now know I have suffered from a debilitating condition called “reflex sympathetic dystrophy,” or complex regional pain syndrome, for the past 14 years. I have resisted taking opiates for pain, and rely mainly on gabapentin and tramadol.

My condition has slowly worsened through the years, and the medications I have been taking no longer help to keep my pain under control, especially during flare-ups.

Are there any new treatments available for my condition?

Complex regional pain syndrome — formerly called “reflex sympathetic dystrophy,” and before that “causalgia” and other names — is a painful condition, usually of the limbs, that often is associated with other neurologic findings and sometimes muscle atrophy. The cause is unknown.

The condition is more common in women, especially older women. It follows trauma, especially bone and nerve injuries or surgery, but the trauma is unrecognized up to 10 percent of the time. The symptoms — pain, redness and swelling, and warmth of the affected limb — begin within six weeks of the trauma.

Unfortunately, your experience with having the condition incorrectly diagnosed or undiagnosed for a prolonged time is common.

One confusing issue is that the pain does not follow the distribution of nerves, which makes it different from most other types of pain. I have, regretfully, seen patients who have been told they are making up the pain, because their physicians do not understand this disorder.

The course of the disease is variable, with 30 percent of people improving and 16 percent worsening in six years of follow-up.

The diagnosis is made clinically, by a careful history and physical exam, and by ruling out other causes. I find that the patient’s description of the pain and the symptoms of allodynia (pain from something that shouldn’t cause it, such as the touch of clothing) and hyperalgesia (heightened sensitivity to painful stimulation) to be very helpful in making the diagnosis.

Care should be directed by an expert in the condition, such as a pain-management specialist.

Multiple treatments are used, including: physical and occupational therapy; medications such as those you are taking; interventional procedures such as regional nerve block and trigger-point injections; and psychological techniques, such as imagery and relaxation techniques (usually with a psychologist). Spinal cord stimulation is sometimes helpful.

A great source of information and support is available at www.rsds.org.

— E.F.