Lisa Arredondo remembers the summer of 2009, when her arms started feeling weak. That, she recognizes in retrospect, was the first sign of fibromyalgia.
By the fall of that year, she felt achy and flulike all the time.
By Christmas, Arredondo said, “Wow, something is wrong with me.”
She was right. But she didn't have a name for it yet.
It wasn't until May 2010 that she was diagnosed with fibromyalgia, a chronic pain disorder that affects some 5 million people in the country, 80 to 90 percent of whom are women.
Fibromyalgia is often misconceived as a psychosomatic problem, according to a report published in The Nurse Practitioner journal in 2012.
It has gained legitimacy in recent years.
The American Pain Society first published guidelines for treating fibromyalgia pain in 2005. The Food and Drug Administration approved medications (Lyrica, an anticonvulsant, and Cymbalta, an antidepressant) for the condition in 2007 and 2008, said Kim Dupree Jones, an associate professor in the School of Nursing at Oregon Health & Science University in Portland and one of the authors of the The Nurse Practitioner journal report.
The new generation of medical professionals believe it's a real diagnosis, said Jones, who has done considerable fibromyalgia research and is president of the Fibromyalgia Information Foundation.
Fibromyalgia, a symptom-based diagnosis, includes widespread body pain, sleep problems, fatigue and cognitive dysfunction. People with fibromyalgia have enhanced sensory processing, according to the report.
In other words, people with fibromyalgia have sensory knobs turned up extra high. Their pain is like a migraine compared to a headache.
Exactly what causes it is unclear and probably varies by individual. It's believed to be related to environmental stimuli — such as a virus or injury or trauma — along with a genetic predisposition.
Jones said existing theories on the causes of fibromyalgia are largely based on patients' self-reporting. Patients have reported pain starting after whiplash from an accident, or a viral illness such as the flu. Others have reported fibromyalgia's origins during vague but unrelenting stressful situations at home or work — relationships, finances and health.
Arredondo, 48, doesn't know why she has fibromyalgia, but she said she used to have migraines before developing it.
It can take, on average, more than two years to get an accurate diagnosis of fibromyalgia, according to fibrocenter.com. A new Mayo Clinic study suggests that many people who have fibromyalgia, especially men, go undiagnosed.
There's no known cure, but there's hope in many aspects of the disorder, Jones said.
“We're at the phase now (where) we know what's wrong with the pain system. We have drugs. The drugs will get better. Acceptance will get better. As all those materialize, there's a lot of hope for people,” Jones said.
The physiological mechanisms underlying the pain are from “disordered pain processing in the central nervous system,” according to a 2011 article in the Journal of Clinical Rheumatology & Musculoskeletal Medicine. “The resulting central and peripheral sensitization leads to the characteristic pain amplification that causes mildly painful stimuli to be interpreted as severely painful and even nonpainful stimuli, such as clothing or a blanket against the skin, to cause discomfort.”
Many fibromyalgia patients also report fatigue, disrupted sleep, physical stiffness, cognitive dysfunction and mood disorders, and the overlap between so many syndromes makes managing a patient's symptoms and quality of life quite complex, according to the article.
Medications can help in treating pain, but there are many other strategies to attempt, according to the article, including cognitive behavioral therapy, complementary and alternative therapies, exercise and dietary changes.
One woman's story
In April 2010, Arredondo finally saw a doctor for her chronic pain and fatigue. At first, she said, the doctor didn't believe her symptoms were real and didn't offer any solutions. So she went to a rheumatologist. Blood tests ruled out other medical disorders. She was diagnosed with fibromyalgia in May 2010 and given treatment options to consider.
Managing fibromyalgia is highly individualized and can combine medications and alternative therapies. Finding what helps usually takes some trial and error, according to the article in The Nurse Practitioner.
Arredondo didn't want to take drugs. Instead, she tried walking for therapy, which hurt, and acupuncture, which helped a little, for a while.
For some time, despite her pain and fatigue, Arredondo kept working part time at New Hope Church, in music ministry, computer work, other jobs. But it was becoming harder to function, especially since she slept horribly and was always tired. Ultimately, she quit working at the church.
She had been an avid exerciser — cardiovascular workouts, weightlifting — and a dancer. But exercise became extremely unpleasant and made her body hurt. She stopped, and grew weaker.
By Christmas 2010, she was too miserable to resist what relief medication could potentially offer.
“I said, 'If drugs will help my quality of life, I'm not going to not take them,'” she said. After an adjustment period, she found that a serotonin-norepinephrine reuptake inhibitor (SNRI), an antidepressant, relieved her pain and improved her energy about 30 percent.
Antidepressants are often used to treat fibromylagia, to help with pain, associated depression and anxiety. Anticonvulsants have been used to improve pain, fatigue, sleep and other functions, according to The Nurse Practitioner journal's report. Analgesics can help with pain, too.
But patients are increasingly choosing nondrug therapies, especially exercise, the report said.
Arredondo saw physical therapists and had myofascial release therapy — a type of soft-tissue therapy that uses pressure and movement — which helped. She tried yoga and tai chi, but sometimes those things caused pain and knocked her out for weeks.
“I thought, 'I really need to strengthen my muscles,'” she said.
About six months ago she found a personal trainer in Bend, Katie Mital, who specializes in treating people with specific health problems, including fibromyalgia.
Arredondo sees Mital, who has several clients with fibromyalgia, every other week for an hour. Mital gives Arredondo gentle exercises to improve her strength, range of motion and balance.
On a recent day, Arredondo warmed up her legs on a treadmill before starting some side-leg pulls using a cable attached to 20 pounds of weight. Then, on her back, she stretched her legs in sort of a bicycle-pedaling motion that activated her core muscles. She balanced on one foot on a disc-shaped foam pad and reached forward with one arm while stretching the opposite leg behind her.
Mital said she is extra conservative when guiding Arredondo in exercises, making sure to never overdo it. Mital said that posture and form is even more crucial with fibromyalgia patients. What makes any other person a little sore could make someone with fibromyalgia hurt severely for weeks.
Research has shown that exercise can help someone with fibromyalgia improve many aspects of their lives, Mital said. It allows them to accomplish everyday tasks. It can ease depression.
“With fibromyalgia, because of such systemic impacts on one's body and (life), you'll often see depression as a symptom,” Mital said. “ ... being able to take a little control back, saying 'I can go work on the yard and take care of my kids and go for a walk,' that can improve quality of life.”
Her exercise plan, Arredondo said, has improved her life another 10 percent, on top of the relief she's felt from medications. It helped her resume her daily activities with less pain.
“I've noticed it climbing stairs, lifting grocery bags. I felt like, wow, this doesn't feel so bad.”
After she had quit exercise, her conditioning deteriorated, she said. “I didn't think I'd be able to do a 10-pound bicep curl since I've been sick,” she said. “I'm looking forward to doing more and progressing.”
But it's a slow process, and compared with the kind of activity she used to do, it doesn't seem like much.
Arredondo still has periodic flare-ups, where burning pain shoots through her legs, or spreads through her shoulders and neck.
“I don't know that I'll ever be where I was at, but I hope I'll get better and better and will be able to exercise without pain. And that helps my mood. I'm so happy that I can do this,” she said. “It has helped with an improved outlook on life.”
For more on fibromyalgia
Fibromyalgia Information Foundation, www.myalgia.com