Stand Up to MS

While multiple sclerosis (MS) is a mysterious and unpredictable disease that affects each person differently, scientists and health care providers have made impressive progress in recent years in better understanding how to diagnose and treat it. MS researchers are also recognizing the need for more and better research on the benefits of massage therapy in maintaining quality of life and treating symptoms such as spasticity, pain and fatigue.

For Bianca Weinstock-Guttman, M.D., director of the Jacobs Multiple Sclerosis Center for Treatment and Research at UBMD Neurology, State University of New York, Buffalo, massage therapy is a welcome option for her patients with MS.

“My patients really benefit from massage,” she says. “I recommend it often.” She emphasizes that while massage is often used to address acute problems such as back pain, it can also have long-term benefits for people with MS. “MS is a chronic disease,” she adds. “You need to provide massage therapy for a long time. The patients come back and ask to have their prescriptions for massage refilled.”

In a study by Dr. Weinstock-Guttman and colleagues published March 2018 in the Journal of Alternative and Complementary Medicine, massage therapy was found to be one of the three most frequently used integrative health care approaches by people with MS after their diagnosis. Some recent studies have continued to build on the evidence that massage therapy can help with many MS symptoms.

“Massage is so beneficial,” says Shavonne Thurman, 42, who was diagnosed with MS in 1999 and who participated in a 2016 study on the effects of massage therapy on MS-related fatigue, pain and spasticity. “If I could have one every day, I would.”

What Is MS?

In MS, the body’s immune cells attack the myelin sheath that protects the nerve cells in the central nervous system (CNS). The damage caused by this attack interferes with the nerve impulses traveling from the CNS to the rest of the body.

The hallmark of MS is unpredictability—it affects each person differently, and what course it will take over a person’s life is hard to foresee. That unpredictability of the disease can be particularly stressful for people living with it—they don’t know what to expect, sometimes on a daily basis.

Caroline Craven, 51, who lives in La Cañada Flintridge, California, turned to massage therapy shortly after her diagnosis in 2001. Her symptoms included walking and vision issues, tingling and “electric shocks” that she says feel like a phone vibrating in her pocket. “Massage really helps with that,” she explains. “It helps ground my body.”

Dr. Weinstock-Guttman’s study found that the most frequent reasons for using integrative health care strategies were MS symptom relief, back problems and pain. The study also found that overall usage was higher in people diagnosed with primary progressive MS, a form of MS for which there is only one treatment, just approved last year by the FDA. “In general, people with PPMS are not treated and are older,” says Dr. Weinstock-Guttman.

Craven says when she was diagnosed with a progressive form of MS, she tried integrative therapies that included changes in diet, cannabis, yoga and massage. “I tried massage as soon as I got sick,” she says. “In MS, it’s easy to feel like your body is pulled in a hundred different directions. Massage feels like it connects everything together.”

Pay Attention to These Symptoms

People with MS say massage helps them “feel good.” But many use it for very specific symptoms, some of which may come with caveats.

Many people with MS find massage helps relieve spasticity. But spasticity is tricky; too much massage can exacerbate the symptom. “There have been instances where people experienced increased spasticity [with massage therapy],” says Deborah Backus, PT, Ph.D, director of Multiple Sclerosis Research at Shepherd Center in Atlanta. “All massage therapists try to be responsive to their clients, but knowing what spasticity is and how to work with it is critical.”

Barbara Payne, BS, LMT, the founder of B.Payne.Free Therapeutic Massage in New York City, has been working with the same client since his diagnosis with MS several years ago. She works on his spasticity using specific techniques that they have found work well for him. “Long, soothing strokes help,” she says, but warns, “with spasticity you don’t want to go too deep.” She also rhythmically shakes, jostles and rocks his limbs. “He loves that,” she says. She also uses diaphragmatic breathing and elevates his feet with a wedge pillow in addition to lymphatic drainage, Golgi tendon work and passive range of motion, which she says “helps to lubricate his joints when he’s not moving much.”

In a pilot study on the effects of massage therapy on MS-related fatigue, pain and spasticity, the same study in which Thurman participated, Backus found that massage helped with fatigue in particular. In the study, published in 2016 in the International Journal of Therapeutic Massage & Bodywork, researchers found a significant improvement in the Modified Fatigue Index Scale (MFIS). “We weren’t sure how massage would affect fatigue,” says Backus. “It was rewarding to see that there was a meaningful decrease. Decreasing fatigue and pain can help people with MS stay more active as these are two debilitating symptoms that significantly affect their physical activity, social participation and quality of life.” She adds that “there’s definitely an interest” in using the data for a larger follow-up study.

People with MS are often sensitive to heat, which can exacerbate symptoms. Craven asks her therapist not to use a heated table or hot towels. Craven also has bladder issues. “I have the bladder of a 90-year-old man,” she admits. “And a lot of times the bathroom isn’t near the massage room. Sometimes I have to get up in the middle of the session.” For that reason, it’s helpful for therapists to let clients with MS know the location of the bathroom before the session starts.

Thurman, who uses forearm crutches, points out that massage therapists should also be aware of mobility issues. “Because I have balance issues, to get on the massage table was difficult. It was also hard to move from being on my belly to being on my back,” says the Fayetteville, Georgia, resident. She says her therapist helped her rotate on the table so she felt more comfortable. She also found that she had to take some time after a session to “get my bearings” as she puts it. “After the massages, I was disoriented because my body was so relaxed.”

Payne has noticed a similar phenomenon. “In a lot of MS clients, you find the spasticity may be the only thing holding them up, so if you take away everything, they may have no strength. It’s a fine line to work a muscle just enough to calm it down, but not to turn off completely.”

Opening Communication

While establishing good communication with every client is important, clear communication is a must when working with clients with MS.

“You do feel insecure with MS, especially if you have trouble walking,” says Thurman. Mobility issues, bladder and bowel challenges, and even cognitive issues caused by MS, can all be a possible source of embarrassment. “We’re pretty beat up,” agrees Craven. “People will have different issues in different parts of their body based on their MS and their history.”

“Communication is key with people with MS,” says Payne. “You want to make sure they are comfortable—that they are able to talk to you and tell you how they are feeling. I constantly remind [my client] to let me know what feels good or what doesn’t. I ask how his strength has been and whether he has been doing his exercises. I also check on whether there have been any changes in his medical history. You have to get a full picture of their day-to-day life.”

But client-therapist communication isn’t the only communication that is useful. “We really support [the health care provider] being in direct communication with the massage therapist,” says Dr. Weinstock-Guttman. “They may pick up on things we didn’t pick up on, something that didn’t work or something that needs additional intervention.”

Payne made sure to stay in touch with her client’s physical therapist for just that reason. “Even if it’s a five-minute conversation, it makes the client feel more secure with what’s going on in the treatment process. At the end of the day, that’s what you want. You want the client to feel really good and confident.”

"AMTA is an awesome organization. I can’t imagine any massage therapist not joining."

Karen T., AMTA member since 2002