An accurate history comes first. “Doctors have to
determine if it’s MS pain or not and rule out structural causes,” said Dr. Green. “Don’t immediately
blame MS for a pain if it’s different or new. Either
way, a doctor needs to look into it.”
To get that attention, people need to speak up—
which isn’t always easy. “Communication style is
so important,” said Rock Heyman, MD, chief,
Division of Neuroimmunology/Multiple Sclerosis
at the University of Pittsburgh School of Medicine. “For example, some doctors might tune
out a patient who seems very emotional.” He
suggests people put pain front and center by
using statements such as:
n “One of the biggest problems I want to talk
about is pain.”
n “One of my priorities in this visit is pain.”
n “My number one thing today is pain.”
Go to the appointment with a list of all
symptoms, including itching and burning.
Use descriptive wording like dull, throbbing,
radiating, stinging, and so on. Also note on
the list when the pain gets worse, such as late
in the day or when it’s warm. To help the
doctor check for drug interactions, bring a list
of all prescription and over-the-counter drugs,
as well as vitamins, herbal teas and other
supplements you are currently taking.
If, despite all the prep, pain still isn’t taken
seriously, “Move on to a new doctor willing
to work with you,” said Dr. Green.
“Don’t let anyone tell you that there is no such
thing as pain in MS because it just isn’t true!” said
Tammy Malkowski of St. Clair Shores, Mich.
Malkowski keeps a blog (www.picktammysbrain
. blogspot.com) about her experiences with MS.
Handling pain from
Spasticity includes stiffness, cramping, joint
contraction and muscle spasms (whether brief
twitches or short, sharp pain) and requires a special approach. Spasticity comes from spinal-cord
damage that hurts motor pathways, said Bruce
Cohen, MD, professor of Neurology at Northwestern University Feinberg School of Medicine.
Too much muscle tone can make joints stiff and
limbs (often the legs) heavy and hard to move.
MS can also cause clonus, which makes limbs
(again, usually the legs) shake rhythmically.
“People tend to just say, ‘It hurts, ’” said Dr.
Cohen. “It helps to know the circumstances
under which it hurts.” Medical therapies for
spasticity include baclofen and tizanidine, which
treat a range of spastic movement disorders;
muscle relaxants; and benzodiazepines. However, many “benzos” (often used for anxiety) are
sedating and can result in dependency. Anti-inflammatories, both prescription and over-the-counter, may also help.
Important therapies for spasticity include
stretching, avoiding known triggers such as
heat or fatigue, physical therapy and localized
warmth, if tolerable. The buoyancy and water
resistance of aquatic exercise help people with
weak muscles. People can also learn to balance
their water intake with adequate sodium and
potassium to avoid muscle cramps.
For severe spasticity, doctors may recommend
a more permanent solution such as an implanted
baclofen pump, which bathes the lower spinal
cord in very low levels of the drug. On the plus
side, pumps provide finely tuned doses, and
today’s pumps are more reliable than in the past,
with longer battery life and time-of-day rate controls. On the minus side, surgery always involves a
risk of infection and dysfunction. —RA