Tangled Web

Unraveling fibromyalgia’s precarious mind-body connection.

“I woke up with horrible pain in my neck and upper back. It felt like whiplash,” says Susan Rubinstein, a mother of two from Brookhaven. “No one could figure out what was wrong.”

Three years later, Rubinstein was diagnosed with fibromyalgia syndrome (FMS), a chronic disease that attacks the musculoskeletal system, causing acute tenderness, pain, stiffness and fatigue. One day you’re Superwoman, juggling a full-time job, caring for your family, playing tennis; the next day you can’t get out of bed. Searing pains shoot through your body. The fatigue is overwhelming, mind-numbing. Medication doesn’t help.

Slowly, over time, you recover. You pick up the pieces of your life. Then it strikes again—and this time, it’s even more severe. You’re forced to quit your job; your home life falls apart; and everyone thinks it’s all in your head. This is the nightmare of FMS.

- Advertisement -

While the National Fibromyalgia Association estimates that as many as 10 million Americans suffer from the disorder and the American College of Rheumatology backs them up, medical experts on the other side of the fence disagree. According to a January New York Times article, Dr. Frederick Wolfe, lead author of a 1990 paper that first defined the diagnostic guidelines of FMS, now considers the condition “a physical response to stress, depression and anxiety.” FMS victims are isolated—not just by their inability to function normally, but by the suspicion that they’re faking their illness. Previously, it went by other names: fibrositis, chronic muscle pain syndrome, psychogenic rheumatism and tension myalgias. Although the intensity of symptoms vary, they never completely disappear. Living with the frustration of chronic pain for which there is no known cure often leads to depression, abandoning successful careers and the dissolution of marriages.

Since the majority of FMS patients are women, mostly of menopausal age, their complaints of insomnia, stiffness, fatigue and muscle aches are often mistaken for the normal signs of aging. Doctors write them prescriptions for antidepressants but fail to recognize the signs of FMS. Others give patients the wrong diagnosis. “I was misdiagnosed with multiple sclerosis for 20 years,” says Karen Newman of Ardmore.

A former tennis player, downhill skier and reading teacher, the mother of two was forced to stop teaching and give up her active lifestyle. “Sleep helps,” says Newman. “I take Tylenol—and when the pain is really bad, I add a shot of vodka.”

“There is no test for fibromyalgia,” says Dr. Andre Garabedian, director of the Fibromyalgia and Fatigue Center of Philadelphia in King of Prussia. “In 1990, the American College of Rheumatology came out with a general guideline, identifying 11 out of 18 trigger points for pain. But we don’t have a valid marker.”

Trigger points refer to particular locations on all four quadrants of the body that are painful to the touch. Garabedian acknowledges that many physicians believed the disease was psychosomatic. “Doctors were addressing the symptoms with pain management, but not the underlying cause,” he says. “We now believe FMS is caused by abnormal proteins in the spinal fluid. We think it is a neuro-hormonal disorder affecting the adrenal gland. These changes in the body chemistry increase sensitivity to pain, causing a decrease in serotonin levels.”

- Partner Content -

The good news is FMS is not a progressive or life-threatening disease. With proper self-care and the multidisciplinary approach advocated at the Fibromyalgia and Fatigue Center, sufferers of the disorder can dramatically improve their quality of life. Lyrica has been touted as the new wonder drug for FMS, though it’s not new. “It’s one of many medications we’ve been using for several years, along with Neurontin, as an off-label treatment for FMS,” Garabedian explains.

Originally approved to treat diabetic nerve pain, Lyrica was officially approved for the treatment of FMS in June 2007. “We use many analgesics—Tylenol, Advil, Codeine—as well as antidepressants. Depression is a response to living with chronic pain and feelings of helplessness,” says Garabedian.

Medication can dull the pain of fibromyalgia and relieve depression, but many who suffer from the disorder want more: They want their lives back. That’s what led Upper Darby’s Sandra Ghilardi to Dr. Maria Sykorova-Pritz’s water exercise classes at Healthplex Sports Club in Springfield. The low-impact aquatic program was designed specifically for those suffering from FMS and chronic pain.

“I was diagnosed with fibromyalgia when I was 19,” says Ghilardi. “Over the years, my functioning level went up and down. At one point, I was a Pilates instructor. At other times, I could barely move.”

Ghilardi had taken aquatic classes before, with negative results. “[But] Maria was different from day one,” she says. “She focuses on the whole person, not just the pain.”

- Advertisement -

Highly personable, with a charming Slovakian accent, Sykorova-Pritz stands at the edge of the pool, greeting her regulars with smiles and concern. Her approach is holistic, building both range of movement and self-esteem. “I see it as regaining a sense of balance. How you think and feel emotionally can affect how you feel physically,” she says. “How you feel physically impacts your thoughts and emotions.”

As the participants enter the pool, Sykorova-Pritz turns on New Age music and passes out noodle-shaped flotation devices. “Bend your knees, take your feet off the bottom, let your head fall forward and relax,” she tells her students. “Let go of everything. Find your own safe space. Like a baby in a womb.”

An exercise physiologist and a wellness and aquatic exercise specialist, Sykorova-Pritz is a member of the Aquatic Exercise Association Research Council. Her clinical research on the effects of water exercise in FMS patients has been presented nationally and internationally. “I call it the SykorovaSynchro technique, which focuses on achieving physical symmetry between the muscular and skeletal systems, as well as between the body and the brain,” she says. “The goal is to re-train the neuromuscular path.”

Each session, participants experience total relaxation. “It’s a very safe environment. They can let go of everything—stress, anxiety, pain,” she says. “Then, slowly, I give them gentle exercises so they can become aware of which movements are free of pain and which are limited. In the process, they re-train the pathways between the brain and muscles and become more confident.”

Along with the physical benefits come socializing, frequent laughter and a feeling of normalcy. “Since coming to Maria’s aquatic classes, I’m more aware of my body and have a greater range of motion,” says Ghilardi. “I got a quality of life back I never had before.”

Shirley Loveless of Media adds, “I was skeptical of all this New Age, touchy-feely stuff, but it has greatly enhanced my flexibility. I’m walking differently, and my pain has been reduced by half.”

While each underwater exercise is gentle, the results add up. “Maria makes it fun,” says Loveless. “You don’t realize you’re working your muscles, but the improvement is marvelous. Even my doctor is impressed.”

“An aquatic, low-impact exercise program is an excellent medium for reducing the symptoms of FMS,” says Sykorova-Pritz. “The social aspects of my class build positive behavioral changes, creating feelings of trust, respect and normalcy. The physical component of the class increases endurance, strength, circulation and oxygen consumption.”

However, it’s the “somatic” connection that Sykorova-Pritz credits with her patients’ success. “Water exercise slows down their movements and enhances their awareness of balance, touch, sight and hearing,” she says. “This allows time for the body to regain flexibility in a pain-free, weightless environment.”

In addition to water therapy, Sykorova-Pritz offers hands-on bodywork in her Media office for people suffering from FMS and chronic pain. “What I do isn’t massage. It’s an assessment of the individual’s range of movement, and a process by which that range is increased and pain is decreased,” says Sykorova-Pritz. “A key component is restoring their self-confidence and feeling of control. The goal of all my techniques is to improve basic functions and lifestyle. I put people back together again—literally and figuratively—by balancing their bodies and releasing the flow of healing energy.”

For details on Sykorova-Pritz’s water exercise classes, call (610) 328-8888. To learn more about FMS, visit fibroandfatigue.com.

FMS Symptoms and Risk Factors

Pain. FMS causes pain when pressure is applied to the back of the head, upper back and neck, upper chest, elbows, hips and knees. It may last for months and is accompanied by stiffness.

Fatigue and insomnia. FMS sufferers wake up feeling tired even though they seem to get plenty of sleep. It’s believed they suffer from a disorder that interrupts their ability to experience deep sleep.

Irritable bowel syndrome (IBS). Constipation, diarrhea, bloating and abdominal pain.

Headaches. People with FMS experience headaches and facial pain related to stiffness in their neck and shoulders. TMJ is also common.

Sensitivity. It’s common for FMS patients to be overly sensitive to odors, noises, lights and touch.

Other symptoms: Depression, anxiety, mood changes, tingling, numbness, chest pain, dry eyes, dizziness.

Risk factors: FMS occurs more in women than men and tends to develop during early or middle adulthood. It can also occur in kids and older adults. If you have rheumatoid arthritis, lupus, restless leg syndrome, sleep apnea or a family history of FMS, you may be more likely to develop the disorder.

Holistic FMS Treatments
Interdisciplinary treatments that combine relaxation techniques, biofeedback, massage and meditation are beneficial. Many people with FMS often push themselves too hard. Deep-breathing exercises and other stress management techniques can help.

While physical exercise might be painful at first, symptoms decrease and levels of functioning increase in the long run. A physical therapist can design a home exercise program that combines gentle stretching, flexibility and relaxation. Walking, swimming, biking and water aerobics are effective, especially under the guidance of an instructor trained in chronic pain management.

In 2006, a Mayo Clinic study showed that acupuncture significantly improved FMS symptoms. Chiropractic care, massage therapy and osteopathy are alternative treatment options.

Our Best of the Main Line Elimination Ballot is open through February 22!