When most people think of multiple sclerosis, they think of a disease that causes symptoms of weakness and motor problems -- not pain.
"About 10 or 20 years ago, there was a saying that MS causes all kinds of trouble but doesn't cause pain, which really isn't true," says Francois Bethoux, MD, director of rehabilitation services at the Mellen Center for Multiple Sclerosis Treatment and Research at The Cleveland Clinic.
Multiple sclerosis happens most often in adults, but doctors are diagnosing more children and teenagers with the condition. Of the 400,000 diagnosed cases of MS in the U.S., 8,000 to 10,000 are in people younger than age 18. Neurologists think there are probably many more kids with MS that haven’t been diagnosed.
MS pain differs from the kind of pain you might get with a headache, a joint injury, or muscle strain. "It's often more diffuse, affecting several areas of the body at a time. It often changes over time, getting worse or better for no apparent reason. It tends to fluctuate a lot," says Bethoux. "People often find it hard to describe: It's sometimes described as like a toothache, other times like a burning pain, and sometimes as a very intense sensation of pressure. It's very distressing for patients because they have a hard time explaining what their pain experience is."
So what's causing this baffling, complex, often debilitating pain? Bethoux describes it as "an illusion created by the nervous system." Normally, he explains, the nervous system sends pain signals as a warning phenomenon when something harmful happens to the body. "It's a natural defense mechanism telling us to avoid what's causing the pain," he says. "But in MS, the nerves are too active and they send pain signals with no good reason -- they're firing a pain message when they shouldn't be."
Acute MS pain. These come on suddenly and may go away suddenly. They are often intense but can be brief in duration. The description of these acute pain syndromes are sometimes referred to as burning, tingling, shooting, or stabbing.