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.
A person with primary progressive multiple sclerosis (PPMS) may first see a doctor because of leg weakness or trouble walking. Those are the most common symptoms of this type of MS.
Once it starts, PPMS gets worse over time. How fast it happens or how much disability a person will have varies a lot, so it’s hard to predict. Unlike some other types of MS, there are no relapses or remissions.
Ten percent to 15% of people with multiple sclerosis have this type of the disease. They usually get their...
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.