It never ceases to amaze me when I hear of an MS patient being told by their doctor "Oh Multiple Sclerosis is a painless disease". Two or three decades ago, it was a commonly accepted belief within the medical community that MS is a painless disease. Of course, I'm sure anyone with MS back in those times would strongly disagree. These days it's a proven fact that Multiple Sclerosis can be an extremely painful disease, and it blows my mind that there still Neurologists out there so out of date on their MS facts that they discredit their patients pain by telling them Multiple Sclerosis "shouldn't hurt".
On a personal level, I've been struggling with nerve pain in my face pretty severely for the last two weeks. It's bad enough that I spent most of last night up in tears, popping every pill I could find that could possibly help, praying that the stabbing pain migrating around the right side of my face would stop. I was within seconds of reaching the point of "too much" and going to the ER when the pain finally started to slowly subside. Needless to say, I had a long exhausting night.
Dr. Francois Bethoux, of the Mellen Center for Multiple Sclerosis Treatment and Research at The Cleveland Clinic, did a study specifically on the pain experienced by MS patients. "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. That's a staggering number for disease once believed to be painless.
So what makes MS pain different from other pain? For one, it has no rhyme or reason. "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."
Multiple Sclerosis pain can be confusing for doctors and patients alike. It's very hard to treat when the source of the pain is a malfunctioning nervous system rather than injury. 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."
The pain suffered by MS patients is typically categorized as the following:
▷Acute pain. Acute pain tends to come on suddenly and go away just as suddenly, but can be extremely intense. It's often described as burning, itching, shooting or radiating, stabbing, or tingling. Acute pain can occur anywhere on the body at any given time.
▷Trigeminal neuralgia is a form of acute pain that effects the nerves in the face. It's a stabbing, debilitating pain that can be brought on by chewing, brushing your teeth, touch, yawning, sneezing, or even something as simple as a gust of wind brushing across your face. Many MS patients have had teeth pulled needlessly because Trigerminal neuralgia is often confused with dental pain. The nickname doctors have given to Trigeminal neuralgia is "suicide pain" because of it's intensity, landing people in the hospital desperate for relief.
▷Lhermitte's sign is a brief pain that is best described as a stabbing or electrical sensation that races down the spine (and sometimes radiating into the limbs) brought on by bending the neck forward. It's caused by a lesion on the cervical spine, and while other diseases can cause Lhermitte's sign, it's common in MS patients and often seen as a tell-tale sign of MS by doctors.
▷Girdle band pain, commonly known as "The MS Hug", is caused by the tiny muscles between each rib going into spasms. It's called the 'hug' because of the tight, squeezing sensation it causes as the muscles spasm and tighten. This can occur as high as the chest and as low as the waist. It varies from person to person and is described as a tight, crushing, stabbing, sharp, dull, or even tingling sensation. Because it tends to 'wrap' around the torso, and can make breathing painful or difficult, it's often mistaken for a heart attack or panic attack when it's severe.
▷Chronic pain, defined as such for lasting longer than a month. This includes muscle spasticity, a common problem for MS patients. Spasticity can lead to muscle cramps, tight and achy joints, back pain, and musculoskeletal pain
As you can see, the pain experienced by those of us with Multiple Sclerosis is very real, varying greatly not only from person to person but from day to day. If you're an MS'er suffering from pain, talk to your doctor because there are things available to help bring you relief including medication, physical therapy, and even massage. If your doctor tries to tell you MS is a painless disease? Tell him perhaps he needs his brain examined even more than you do. ;)
Until next time, may you all have a pain free day!