Seek help to solve the fibromyalgia enigma
Donna Hatalowich discusses her battle with fibromyalgia during an interview at her Monongahela Valley Hospital office last week. The Jefferson Township resident was diagnosed with the condition 10 years ago and today facilitates a fibromyalgia support group for fibromyalgia and arthritis patients at the hospital.
Dr. Terence Starz, a rheumatologist with the University of Pittsburgh Medical Center
“It’s all in your head.”
“The pain isn’t real.”
People with fibromyalgia are accustomed to these statements. They’ve heard them before, from friends, co-workers, family members and even some physicians.
For Donna Hatalowich and some 5 million others in the United States, fibromyalgia is very real. The widespread pain, unshakeable fatigue and broad constellation of other symptoms associated with fibromyalgia are real. And, sadly, the debilitating effects that fibromyalgia has on the quality of a person’s life are all too real.
Yet, despite the fact that an estimated 2 to 4 percent of the U.S. population has fibromyalgia, nearly 70 percent of people with the condition have not been formally diagnosed, according to the American Chronic Pain Association (ACPA).
“Fibromyalgia really carries a stigma with it,” says Hatalowich, a Jefferson Township resident who leads a fibromyalgia and arthritis support group at Monongahela Valley Hospital. “Many people don’t believe it exists because years ago people had this condition and they didn’t know how to treat it. So, they figured it was just all in your head. That’s why a lot of fibro patients suffer because they’ve been shuttled from doctor to doctor not knowing what’s wrong with them, having these complaints, having all of these problems, and no one believes them or takes them seriously.”
As such, Hatalowich and leading fibromyalgia experts recommend educating yourself, and those close to you, about fibromyalgia. They also emphasize the importance of finding a specialist who’s knowledgeable about fibromyalgia and can provide you with a correct diagnosis and the right treatment plan to help you cope more effectively with this enigmatic disorder.
Misfiring nerves
Pain is your body’s warning signal that something is wrong. It’s a complex process involving the central nervous system (brain and spinal cord) and peripheral pain generators, such as nerves and receptors, in the musculoskeletal tissues throughout the body. When you suffer an injury, these generators transmit signals to the spinal cord and the brain, where they’re processed and interpreted as pain.
The exact cause of fibromyalgia remains unclear, but experts believe it represents a hypersensitization of the nervous system, resulting in amplification of pain–essentially, the nervous system remains in a heightened state, with nerves “misfiring” or firing all the time. As a result, fibromyalgia patients may experience persistent pain long after an injury occurs. The pain of fibromyalgia is more widespread and is often described as deep muscle aching.
“Fibromyalgia is real,” says Dr. Terence Starz, a rheumatologist with the University of Pittsburgh Medical Center. “Is it all in your head? Yes, it’s a pain-processing problem, but it’s certainly not imaginary.”
Starz uses this analogy to explain the fibromyalgia pain process to patients: If you place your finger on a table and hit it with a hammer, the pain is immediate, and there’s a direct cause-and-effect relationship. With fibromyalgia, it’s like hitting the table instead of your finger but feeling pain in your finger 10 minutes later.
“Patients with fibromyalgia happen to have a circumstance in which it takes a lower threshold to create pain,” Starz explains. “In addition, the physiology is such that the dispersion of pain occurs more widely. In other words, if you hurt your knee, it’s localized, but patients with fibro have pain that’s perceived over a greater area.”
Fibromyalgia is characterized by a number of tender points, specific sites on the arms, back, neck, shoulders, hips and legs that hurt when pressure is applied to them.
The changes to the nervous system characteristic of fibromyalgia affect not only the muscles and bones, but also certain internal organs and other systems. Consequently, pain is only one of many diverse clinical manifestations of fibromyalgia.
Most people with the condition experience severe fatigue, making it challenging for some to complete even the most basic activities of daily living. Contributing to this fatigue is the fact that more than 90 percent of fibromyalgia patients have sleep disorders. Studies have shown that these patients cannot progress to deeper levels of sleep, and thus awake feeling unrefreshed, even if their sleep duration is adequate. And, about 20 percent of fibromyalgia patients battle anxiety and depression, Starz notes.
Many fibromyalgia patients suffer irritable bowel syndrome and other digestive complaints, as well as headaches and memory and concentration problems (referred to as “fibro fog”). Other potential fibromyalgia symptoms include increased sensitivity to environmental factors, such as temperature, humidity, light, sounds and smells; dry eyes and mouth; restless legs syndrome; tingling or numbness in the hands or feet; joint stiffness; and frequent urination.
Fibromyalgia occurs much more commonly in women than in men, and often develops in middle age and increases in prevalence with advancing age. In many cases, the symptoms develop after a stressful or traumatic event, such as an injury or illness, and they tend to vary in intensity over time.
“It’s affected me a lot,” Hatalowich says. “It’s very difficult sometimes to function and get going. You have chronic pain, especially in the morning with the stiffness. Just moving can be a challenge. People don’t understand that it’s not something you have control over. You do push through it and eventually get to where you’re going, but it takes time.”
Living with fibromyalgia
Having worked as a staff nurse at Monongahela Valley Hospital for more than 20 years, Hatalowich knew something was wrong 10 years ago when she started experiencing generalized aches and pains, muscle soreness and stiffness, and extreme tiredness. She was soon diagnosed with fibromyalgia.
Since then, she’s developed other fibromyalgia manifestations, including irritable bowel syndrome, dry eye, and sleep problems. She’s also fought with “fibro fog” on occasion.
“You function, but cognitively you’re not really there sometimes,” she says. “People start finishing your sentences for you because you know what you want to say but you just can’t find the words to say. You begin to think you may have early Alzheimer’s disease because your cognition is just not there. That’s a scary thing.”
Nevertheless, Hatalowich, 59, has managed to cope with her condition. She even went back to school and earned a degree in human services, and with that new degree came a new position at the hospital as a nurse health educator. She now coordinates community health education initiatives, including the fibromyalgia/arthritis support group.
Like many other fibromyalgia patients, Hatalowich doesn’t openly exhibit signs of her condition. But, she says she’s been limited by her fibromyalgia, and she admits that some days the fatigue and pain have made it difficult for her to get to work on time or even get out of bed.
“When I do something, I try to do it to the best of my ability, no matter what it is. That’s why this disease is so difficult for me because it takes me away from my best. I’m not at my best, and that hurts,” she says, tears welling in her eyes. “Fibro people look tired, but we don’t look ill. That’s why a lot of people don’t believe it exists. I know a lot of people who come to the support group are very frustrated because their bosses and co-workers don’t understand. It’s very difficult because they miss a lot of work. It’s not something that they plan, but there are days when they wake up and it’s just impossible to move and get going.”
Working adults with fibromyalgia miss, on average, nearly 17 days of work each year, compared to six days for people without the condition, according to the U.S. Centers for Disease Control and Prevention (CDC).
Kathy Vitale says the amount of work she missed due to her fibromyalgia forced her to lose her job as a laborer. The Monongahela woman was working full time when she suffered a spinal fracture at age 43. She had also experienced fatigue, achiness and other signs of fibromyalgia that made her feel “like a 90-year-old woman,” Vitale recalls. And when she underwent surgery, her symptoms only worsened.
Today, more than 10 years after being diagnosed with fibromyalgia, Vitale is still bothered by her fibromyalgia symptoms, as well as a pinched nerve in her neck and a troublesome knee and hip. She and her husband, Gerald, who retired early from his job because of total shoulder replacement surgery, spend most of their time at home these days.
“He’s been very supportive, and he knows when to let me do my thing and just lie down. We’re like two people who just get by,” she says. “I don’t leave the house very often because it’s just too much to get around. Fibro can be debilitating. Sometimes I’m in bed all day. If I have a good day, I’ll try to go out shopping. I’ll bring everything home and put it away the next day. I do a little bit, and that’s about it. I do what I can do.”
Like Vitale, Hatalowich says fibromyalgia has affected her life at home as well as at work. For instance, some nights her husband, Mike, is “left to fend for himself” for dinner because she’s too exhausted after work, she explains.
“There are some nights when I get home and I can’t function,” Hatalowich says. “He really doesn’t mind. He’s been very supportive. He’s been great. But, he’s had to read and educate himself on what fibro is and how it affects people. I think the more he read and he learned, the easier it was for him to understand me.”
Fighting fibromyalgia
Although fibromyalgia awareness has grown, it can be difficult for some people to grasp a condition with such diverse symptoms and no objective test to diagnose it.
Both Hatalowich and Vitale were fortunate to receive a prompt diagnosis from a rheumatologist with experience treating fibromyalgia.
Others aren’t so lucky. Research suggests that patients visit at least four physicians, and may undergo an array of treatments, before receiving the right diagnosis. The ACPA notes that it takes an average of five years for a fibromyalgia patient to receive an accurate diagnosis.
“Patients with fibromyalgia are oftentimes pretty frustrated because they’re having symptoms, they don’t know exactly what to do, and their healthcare professionals may or may not have expertise in taking care of the problem,” Starz says. “People often go for long periods without having a diagnosis made.”
Doctors diagnose fibromyalgia based on a patient’s medical history, symptoms (including persistent pain that lasts at least three months), physical examination, the number of tender spots the patient has, and ruling out other diseases that might be responsible for the symptoms, such as hypothyroidism, polymyalgia rheumatica, rheumatoid arthritis or lupus. Starz notes that fibromyalgia patients often are relieved to receive a specific diagnosis and to have other conditions ruled out.
“You have to find out what the pain generator is and what’s causing it, and then go from there,” he says.
Given fibromyalgia’s complex nature, treatment entails a multifaceted approach, incorporating a combination of healthful lifestyle changes and other non-medicinal treatments, as well as medications to address pain, fatigue, sleep, depression and other components of the syndrome.
Analgesics like acetaminophen (Tylenol) or prescription tramadol (Ultram), as well as nonsteroidal anti-inflammatory drugs, such as ibuprofen (Advil, Motrin), prescription meloxicam (Mobic), and naproxen (Aleve), can address arthritis and other pain generators in the musculoskeletal system.
Other medications influence the chemicals involved in the transmission of pain impulses and the processing of pain in the brain. These drugs include older tricyclic antidepressants, such as amitriptyline (Elavil); the anticonvulsant medications pregabalin (Lyrica) and gabapentin (Neurontin); selective serotonin reuptake inhibitors, such as fluoxetine (Prozac); and serotonin and norepinephrine reuptake inhibitors, such as duloxetine (Cymbalta), milnacipran (Savella) and venlafaxine (Effexor).
“There are side effects to all of the medications, and they have to be carefully monitored,” Starz advises. “Patients have to weigh the good effects versus the side effects versus what’s going to happen if they receive no treatment.”
Counseling, such as cognitive behavioral therapy, may help fibromyalgia patients cope with symptoms and combat anxiety and depression. Patients are also encouraged to take steps to improve their overall health by exercising regularly as much as their condition allows, and adhering to a healthful diet low in fat and replete with nutrient-rich foods such as fruits, vegetables, whole grains and lean protein.
“If you eat well and exercise, you’re going to feel better,” Hatalowich says. “The problem is mustering up the energy to exercise, but once you do, if you can push through it, you’ll feel better.”
A number of complementary and alternative therapies–including acupuncture, biofeedback, relaxation techniques, massage therapy, and spinal manipulation–also may provide some benefits for fibromyalgia patients. Some patients gain relief from taking a hot bath or icing a sore joint.
“You have good days and bad days,” Vitale says. “I take a hot bath or shower twice a day. You just have to know what routine works best for you. Whatever works to manage your pain, do it.”
The outlook
As Starz tells his patients, you are the captain of your fibromyalgia ship, your significant others are your first mates, and your doctor is your navigator. It’s up to you to learn about fibromyalgia, share what you learn with the people in your life, and seek out a specialist who can guide you in managing the condition, Starz says.
“Educating people is so important, and communication with your health-care professional is essential,” he says. “Many people with fibromyalgia do OK. Does it go away? No, it doesn’t. The bottom line is you have to create the right circumstances to understand it. If you understand it and manage it, and if you empower patients, a lot of people do OK.”