My first phone call for a massage (that wasn’t from someone I already knew) was from a very nice lady. She got my card from someone else, and she was really hoping she could schedule an appointment with me. I was so excited! I opened my brand-new appointment book and got ready to take down her information. Then, she said it: “By the way, I’m recovering from Guillain-Barré Syndrome. That won’t be a problem, will it?”
This was in 1984. It was pre-Google. It was even before I owned the American Medical Association Family Medical Guide or any other resources. All I had was an out-of-date medical encyclopedia, and I didn’t know how to spell “Guillain” or “Barré”—and neither did she. All she knew is that it had something to do with her nerves. Reluctantly (but ethically), I told her I didn’t have enough information to know if I could treat her safely. I didn’t make the appointment. It broke my heart, and I decided that would never happen to me again.
That phone call led to an amazing career of learning and teaching about the interface between massage therapy and complicated health challenges. I don’t remember that lady’s name. If I could, I would send her flowers, and give her a great massage.
The last Pathology Perspectives column in Massage & Bodywork focused on Zika virus (November/December 2016, page 40), with the promise that in this issue we would look at the Zika virus complication that is most likely to affect adults: Guillain-Barré Syndrome (GBS).

Zika Review
Here’s a quick synopsis of the last article: Zika virus is a pathogen that can be spread by mosquitoes or through sexual activity. An outbreak in Brazil in 2016 spread through much of South and Central America and into the southern part of the United States. Travel-related Zika has been now diagnosed in all 50 states, but mosquito-borne infections have only happened in Florida as of this writing.
Zika infections are totally silent in about 80 percent of everyone infected; those people may never know they’ve been exposed. Symptoms, when any emerge, include fever, body aches, headache, fatigue—it looks a lot like flu. The infection runs its course within two weeks, and then the person appears to have resistance to any future viral attacks.
For a small number of people, however, exposure to Zika carries two important risks: women who are pregnant when they contract Zika have a risk of serious birth defects for their babies, and older adults who are infected with Zika have a low risk of developing GBS—a serious autoimmune condition that can damage the peripheral nervous system.

What is Guillain-Barré Syndrome?
GBS is an autoimmune attack on the myelin sheaths of peripheral nerves. It was first documented in England in 1859, but a team of French doctors (including neurologists Georges Guillain and Jean-Alexandre Barré) named the condition after studying it in 1916.
With GBS, white blood cells and antibodies destroy patches of myelin on spinal or cranial nerves. Some forms of GBS can extend the damage to the neuron fibers themselves. It usually begins in the extremities—bilaterally in the fingers and toes—and then moves toward the core. One form, called bulbar GBS, affects the vagus nerve and can dramatically impair swallowing, breathing, and other vital functions.
GBS is the most common form of acute multinerve infection in the Western Hemisphere. Even so, it is relatively rare, affecting between 3,000 and 6,000 people in the United States each year. Mature adults are affected more often than other age groups, and men are slightly more frequently affected than women. Most people who develop GBS have full or nearly full recovery, but 3–5 percent die from respiratory failure, blood clots, infection, or cardiac arrest.
Epidemiologists are watching to see if the spread of Zika in North America will also be linked to increasing rates in GBS diagnosis here; so far, that has not come about. This may be because the precise cause-and-effect links between Zika exposure and GBS are more complicated than first thought. Some evidence suggests that a person is more likely to develop post-Zika GBS if they have also been exposed to dengue fever—a closely related viral infection that is spread by the same species of mosquitoes that are most likely to carry Zika. As of this writing, only a few cases of GBS in the United States have been linked to Zika exposure, but that number may increase.
When it was first documented in the early twentieth century, GBS was considered to be a single condition. Now, several subtypes have been identified, but they all have the same qualities of being autoimmune attacks on myelin in the peripheral nervous system, usually triggered by a preceding bacterial or viral infection.
In the United States, the most common form of GBS is called acute inflammatory demyelinating polyradiculoneuropathy—a mouthful, but this simply means that it has a sudden onset, and it affects the myelin of multiple peripheral nerves. Other forms of GBS are more prevalent in other parts of the world.
It is rare for GBS to develop without some triggering event—usually an infection with some organism that has some markers that resemble myelin. Until recently, the most common pathogenic trigger for GBS in the United States has been exposure to Campylobacter jejuni, a bacterium that frequently causes food poisoning. In some cases, the trigger for GBS does not appear to be an infection. Instead, it could be a reaction to a vaccine, surgery, pregnancy, or trauma.

What Happens When Someone Has GBS?
The sequence of how a person progresses from an infection or trauma to GBS is not entirely clear. Researchers believe the triggering pathogen (Zika virus, C. jejuni, or whatever else) must have some proteins that resemble myelin in such a way that the immune system—especially certain lymphocytes and antibodies—launch a sudden and aggressive attack against it in patchy areas throughout the body. All peripheral nerves are vulnerable, including both spinal and cranial nerves. This is especially serious when the autoimmune attack affects the vagus nerve or nerves that supply the face.
Myelin both speeds transmission of electrical nerve impulses and offers insulation that prevents the messages from jumping unintentionally from one neuron to another. Nerve fibers with damaged myelin cannot send messages as efficiently as unaffected nerve fibers: without myelin, we are vulnerable to slow messages and “short circuiting” of the impulses. This is similar to the etiology of multiple sclerosis (MS), except that GBS affects nerves of the peripheral nervous system, where MS is restricted to the central nervous system.
The net result of the damage to myelin covering on peripheral nerve tissue is a rapid onset of any combination of pain, numbness, tingling, and weakness in the affected areas. Some people report early symptoms in their face, but a more typical progression moves from mild tingling in fingers or toes to full, or nearly full, weakness or flaccid paralysis, often with the need for a ventilator, within a few days. This is followed by a recovery period that tends to be long and slow—it can take up to 18 months for a GBS patient to regain full or nearly full function, and some people end up with permanent weakness.

Treatment
Treatment for GBS is aimed at shortening the immune system attack and keeping the patient safe while they recover. This involves interrupting the activity of the rogue white blood cells and antibodies that are tearing up the myelin, while making sure the patient is able to breathe during recovery. Patients are usually hospitalized, and treatments can include any combination of plasma exchange, immunoglobulin injections, ventilator assistance if breathing is very weak, anticoagulants, and painkillers.
After the acute phase has passed, some GBS patients need help to recover full muscular function. Speech therapy may also be called for if the patient has weakness in the muscles that control healthy swallowing. Occupational therapy, physical therapy, and massage therapy can be useful at this point.
Implications for Massage
The implications of massage for GBS are complex and not easily generalizable. An excellent story of how one MT worked with one patient with GBS is told in the October 2010 and January 2011 editions of Massage Therapy Canada. These articles tracked how a massage therapist began working with a patient with GBS in the hospital. The articles provide a snapshot into a single case where massage therapy appeared to be helpful, but they also emphasize how variable this disease is, and how much it calls for massage therapists to be flexible and adaptable to unexpected changes in the client’s condition.
Although it usually has a good prognosis, GBS can be a distressing and painful experience. The autoimmune attack on the myelin sheaths can affect both motor and sensory neurons, so while some level of weakness or paralysis is common, the pain involved with these attacks on spinal nerves can be excruciating.
The treatment challenge is that the nervous system is compromised and to suppress it further with narcotic painkillers is risky. These drugs also suppress the respiratory drive: a serious concern for GBS patients. Consequently, finding nonopioid options for pain management is an important part of the treatment strategy for people with GBS, and this is where massage therapy might be most helpful.
As with every other question about massage therapy and pathology, working with a client who has GBS boils down to three questions: What are the risks? What are the benefits? How can I design a session or a series of sessions that eliminates the risks while maximizing the benefits?

The Risks
Overwhelm. A person who is still in the acute phase of this condition—that is, getting worse instead of better—is probably better off with gentle touch that supports, comforts, and soothes rather than challenges any processes in the body. This person’s immune system is confused and overactive; they don’t need more overwhelming stimulus.

Numbness. Furthermore, many people with GBS experience some sensory paralysis. This is a caution for massage, because they can’t give accurate feedback about pressure or comfort.

Communication. A final caution concerns the most severe cases where a person might have some facial paralysis and/or spend some time on a ventilator to assist with respiration. Not only does this mean they are at great risk for secondary infection, it also means their ability to communicate is limited and any bodywork must be tuned to nonverbal signals about comfort.
That said, acute GBS can be both frightening and painful. Any noninvasive comfort that massage can offer—as long as all the involved health-care providers are in the loop and the massage therapist is qualified to work in a hospital setting—can make this time a little easier.

The Benefits
A person who is being successfully treated for GBS, or who is in the long-term recovery period, may enjoy the more typical benefits of massage therapy, including boosting local circulation; stretching and manipulating disused muscles; and reducing pain, anxiety, and fatigue.
One important benefit that massage can offer people with GBS is a nonpharmacological way to help manage pain. This disease is both acutely painful and involves a compromised nervous system and a weak respiratory drive. This means the most powerful analgesics are avoided if at all possible, because depressing the nervous system with opioids can open the door to other complications. Massage therapy has a good evidence base for pain reduction, and while it may not be the only intervention that a person uses, it seems safe to suggest that massage might reduce the amount of overall painkiller medication a patient needs. This is a substantial benefit, especially in a situation where the side effects of medication are so potentially dangerous.
A person who had GBS in the past and who has achieved full or nearly full recovery is a good candidate for any massage they enjoy. The only caveat is for people who experience permanent weakness or numbness; the affected areas must be treated with extra care.

Resources
Andary, M. T. Medscape. “Guillain-Barré Syndrome.” Accessed November 2016.
http://emedicine.medscape.com/article/315632-overview.
Cunningham, B. “Guillain-Barré Syndrome: Is There a Role for Massage Therapy?
Part 1.” Massage Therapy Canada (October 2010). Accessed November 2016.
www.massagetherapycanada.com/operations/guillain-barre-syndrome-1759.
Cunningham, B. “Guillain-Barré Syndrome: Is There a Role for Massage Therapy?
Part 2.” Massage Therapy Canada (January 2011). Accessed November 2016.
www.massagetherapycanada.com/technique/guillain-barre-syndrome-1802.
National Institute of Neurological Disorders and Stroke. “Guillain-Barré Syndrome Fact Sheet.” Accessed November 2016. www.ninds.nih.gov/disorders/gbs/detail_gbs.htm.
World Health Organization. “Guillain-Barré Fact Sheet.” Accessed November 2016.
www.who.int/mediacentre/factsheets/guillain-barre-syndrome/en/.

Ruth Werner, BCTMB, is a former massage therapist, a writer, and an NCBTMB-approved provider of continuing education. She wrote A Massage Therapist’s Guide to Pathology (Lippincott Williams & Wilkins, 2016), now in its sixth edition, which is used in massage schools worldwide. Werner is available at www.ruthwerner.com.