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.
"In a national survey of more than 7,000 MS patients, 70% of them had experienced some kind of pain, and at least 50% were experiencing some kind of pain at the time of the survey," Bethoux says.
The National Multiple Sclerosis Society reports that almost half of all people with MS are troubled by chronic pain.
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."
Some of the most common types of pain experienced by multiple sclerosis patients include:
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.
Trigeminal neuralgia or "tic doloureux." A stabbing pain in the face that can be brought on by almost any facial movement, such as chewing, yawning, sneezing, or washing your face. People with MS typically confuse it with dental pain. Most people can get sudden attacks of pain that can be triggered by touch, chewing, or even brushing the teeth.
Lhermitte's sign. A brief, stabbing, electric-shock-like sensation that runs from the back of the head down the spine, brought on by bending the neck forward.
Burning, aching, or "girdling" around the body. This is called dysesthesia by physicians.
There are also some types of pain related to MS that are described as being chronic in nature -- lasting for more than a month -- including pain from spasticity that can lead to muscle cramps, tight and aching joints, and back or musculoskeletal pain. These chronic pain syndromes can often be relieved by anti-inflammatory drugs, massage, and physical therapy.