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Your Good Health: Pain syndrome often incorrectly diagnosed

Dear Dr. Roach: I sustained a ruptured disc from shovelling snow, then underwent a microdiscectomy, after which I developed severe nerve symptoms. It took me years to get a correct diagnosis.

Dear Dr. Roach: I sustained a ruptured disc from shovelling snow, 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 14 years. I have resisted taking opiates for pain, and rely mainly on gabapentin and tramadol.

My condition has slowly worsened over the years, and I find that 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?

E.F.

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

It 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 per cent 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 seen patients who have been told they are making up the pain because their physicians do not understand the disorder. The course of the disease is variable, with 30 per cent of people improving and 16 per cent worsening in six years of follow-up.

The diagnosis is made clinically, by a careful history and physical examination, 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. Several treatments are used. They include: 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 at rsds.org.

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Dear Dr. Roach: I am 20. I started gaining weight about a year ago. I feel uncomfortable with all this weight on me. I am 190 pounds and almost six feet tall. My doctor has given me suggestions on how to improve my diet and physical activity. Is there a smartphone app I can use to help me keep track of my diet each day?

J.D.

You don’t need a smartphone app to have a good diet, and following your doctor’s recommendations can be very simple.

However, I know some people like to use these apps, and I have seen apps that I think are easy to use and may be effective at helping people lose weight.

The two most commonly used apps I see are MyFitnessPal and Lose it!, both of which can do a good job of keeping track of calories taken in and expended. Perhaps the most useful thing about these apps, like any food diary, is knowing you need to account for everything you eat and that you will be going over your food choices with your doctor (or dietitian).

Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to [email protected].
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