Lifestyle changes can help patients deal with fibromyalgia’s pain and fatigue.
by Lisa James
Pain has been Lynne Matallana’s companion since she was a child. However, “I was always told that pain was a sign of weakness and should be ignored.”
As Matallana got older the pain was joined by other woes including endometriosis, in which patches of uterine lining appear in other parts of the body. What’s more, the operation that was supposed to help bring relief only made things worse.
“All of a sudden everything didn’t work; it felt like acid was running through my veins,” recalls Matallana, now 58 and living in Newport Beach, California. “That was the beginning of what was eventually diagnosed as fibromyalgia.”
According to the National Fibromyalgia Association (fmaware.org), an estimated 10 million Americans suffer from this disorder, marked by what the NFA describes as “profound, chronic and widespread” pain along with severe fatigue and poor sleep. And while most people diagnosed with fibromyalgia are women between the ages of 20 and 50, it can affect anyone at any age.
No blood test or body scan can detect FM and its symptoms mimic those of other disorders, which complicates the diagnostic process.
Matallana knows. When she sought help in 1993, “doctors who had heard of FM didn’t believe it—they thought, ‘Hysterical woman, overly stressed.’” Matallana saw 37 practitioners before being diagnosed (an experience that led her to cofound the NFA).
“I think FM gets more respect than it used to, thank goodness, but less than it deserves. It’s the Rodney Dangerfield of medical problems,” says David Katz, MD, MPH, FACPM, FACP, founding director of Yale University’s Yale-Griffin Prevention Research Center. But he adds, “There is pretty widespread recognition that this condition is legitimate. It used to get a roll of the eyes.” Despite the development of diagnostic standards, a Mayo Clinic study found FM to be under-diagnosed (Arthritis Care and Research 11/30/12).
According to the American College of Rheumatology, a finding of fibromyalgia is made depending on how many body parts out of 19 are painful and how severe the pain is, as well as how long the pain lasts (at least three months). FM also leaves people fatigued, unrefreshed by sleep and suffering from cognitive problems.
Katz notes that these symptoms often reinforce each other. “Exhaustion heightens sensitivity to pain,” he says, adding that impaired sleep means that “your brain never gets a chance to reboot.” A study in Arthritis and Rheumatism found that disruptions in brain signals for pleasure and pain appear to increase pain sensitivity in FM patients (11/13).
One problem is that FM overlaps chronic fatigue syndrome. “In most people, they are the same illness with two different names,” says Jacob Teitelbaum, MD, author of five books on the subject including The Fatigue and Fibromyalgia Solution (Avery/Penguin). “A small subset have pure CFS, with the fatigue but without the widespread pain.”
Matallana believes FM can be triggered in genetically susceptible people by “a car accident, a pregnancy, a long-term infection. It’s like your body blows a fuse.” Teitelbaum says hormonal deficiencies and chronic stress can also trigger FM.
Each FM patient not only experiences the disorder differently but also responds to treatment differently. That makes trying various complementary approaches helpful. Among those the NFA says can be “very beneficial” are acupuncture, aromatherapy, biofeedback, chiropractic, physical therapy, therapeutic massage and yoga. A recent study suggests that hyperbaric oxygen therapy may also help (PLOS ONE 5/26/15).
Addressing physical symptoms requires dealing with psychological issues as well. Teitelbaum has found that many people with FM/CFS “are approval seekers who avoid conflict to avoid losing approval.” A number of studies have found a link between fibromyalgia and an abusive childhood.
Being in constant pain also causes psychological distress, which itself needs to be addressed. “Learning to live with a chronic illness often challenges a person emotionally,” says the NFA, which recommends finding a support group or talking things out with a therapist. (You can find online support at livingwithfibro.org.)
Exercise is front and center for people with fibromyalgia, although as Matallana cautions, “When you start, it will hurt more and it takes a bit to get over that hump.
It’s really important that you do activities to where you’re going to hurt a little bit but not that you wind up in bed two or three days.”
Teitelbaum suggests starting a very gentle walking program, adding 50 steps a day until you find the level that feels best. Matallana says that after exercising you should “take time to rest, take a hot shower or bath to relax your muscles, do stretching so the muscles cool off slowly.”
Proper nutrition also plays a vital role. Teitelbaum says it is especially important to cut out added sugar, which suppresses the immune system, stimulates yeast overgrowth and makes hypoglycemia, or low blood sugar, worse. And while each FM patient’s dietary needs will differ, Teitelbaum says, “Most people with fibromyalgia find that they feel best with a high-protein, low-carbohydrate diet.”
Teitelbaum suggests taking vitamin B12, iron and fish oil, a source of the types of omega-3 fatty acids that are often low in people with FM. If you take acetaminophen frequently, Teitelbaum says to take 500 to 1,000 milligrams of an amino acid variant called NAC “each day so you don’t deplete your glutathione levels.”
While scientists continue to look for ultimate answers to the riddle that is fibromyalgia, the NFA urges people with this condition to embrace a take-charge attitude. The group says, “Developing an individualized self-management plan, from identifying effective treatment approaches to making necessary lifestyle changes, will further improve one’s health.”
Matallana, now the CEO of a web portal for pain patients called Community Pain Center (ourcpc.com), knows that it’s possible to live a good life with FM. She went from being bedridden to “17 years later being very active. I believe over time everyone can get better even if it isn’t a complete cure.”