Living with Fibromyalgia
Treatment can help sufferers of the chronic pain syndrome.
Illustration by Stephen Sauer
We all have aches and pains now and then, but experiencing chronic pain is something altogether different. For fibromyalgia patients, it's life. They can typically expect to begin and end each day feeling physically and, in many cases, emotionally lousy. Symptoms can be severe enough to make daily tasks difficult, yet some patients find that fibromyalgia is like the Rodney Dangerfield of ailments - it arouses little sympathy from family and co-workers who skeptically view the somewhat mysterious condition as "all in your head."
Fibromyalgia is a disorder characterized by widespread and persistent pain that is accompanied by fatigue and sleep disturbances and often anxiety, headaches and cognitive and memory problems. It affects an estimated 5 million Americans, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, and occurs most often in middle-aged women, but fibromyalgia cases have cropped up in men, teenagers and the elderly. Many fibromyalgia patients have experienced some sort of trauma, such as abuse or a car accident, but not all instances of the disorder can be traced to a triggering ordeal or event.
A diagnostic test for fibromyalgia does not exist. Instead, it is viewed as a syndrome that is identified through factors such as patient history, physical examination results and clinical symptoms, says James A. Mirazita, MD, ABIPP, medical director of Pain Solutions, which has offices in Nashua, Bedford, Peterborough and Laconia.
Its cause remains unknown. Some theories have proposed viral beginnings, or blame chronic sleep deprivation for the lingering pain and other symptoms, says Mirazita. It is true that fibromyalgia patients "almost always have a significant sleep issue," he says, and symptoms improve when problematic sleep is addressed head-on through measures such as lifestyle changes and medication. "But the fact is, nobody knows the true cause," he says.
Although fibromyalgia's origins remain elusive, many experts believe they're getting closer to understanding the source. "For many years, fibromyalgia was considered a psychosomatic disease," since patients reported generalized pain but testing ruled out all possible physical causes of the pain, says Joshua Greenspan, MD, a pain medicine specialist at PainCare, which has offices throughout New Hampshire. But with the advent of MRI technology, an objective way to study pain through brain imaging was born, and it has led many scientists today to believe that patients with fibromyalgia have a sort of faulty pain processing mechanism; they essentially have overactive pain processing systems that cause them to perceive pain even when there is no physical damage to the body, Greenspan says. It's as if the body keeps sounding the alarm even though there is no reason to go into red-alert mode. In fibromyalgia patients "alarms are constantly going off," Greenspan says, so patients feel pain constantly.
There is no cure for fibromyalgia, but many patients have found relief from symptoms through treatment. Lifestyle changes can help - often patients benefit from learning chronic pain coping skills, taking stress management classes or engaging in psychological or psychiatric treatment that includes behavioral modification and stress management principles, Mirazita says. Group classes offer the added advantage of allowing patients to hear from others who have similar problems, creating "a web of support," Mirazita says, and a setting in which patients can receive "reinforcement and encouragement to keep on trying to move forward and not let [fibromyalgia] ruin their lives." Many patients also find complementary treatment, including massage therapy and acupuncture, to be helpful, he says.
In addition, fibromyalgia patients should push themselves to be active. Physical activity is "vital" to fibromyalgia patients' well-being, says Greenspan. It provides the myriad health benefits of exercise - enhancing patients' physical condition, staving off disease and prompting the body to release chemicals that reduce pain - but also develops in patients the ability and determination to work through discomfort, Greenspan says. For fibromyalgia patients, physical activity "helps remap the nervous system to override the pain" and enables a return to functionality, he says.
Pharmaceutical methods also frequently play a role in fibromyalgia treatment to ease pain and promote more restful sleep, but given the multi-pronged nature of fibromyalgia, medications alone are not typically enough, Mirazita says. Treatment must be multi-modal, and patients must be willing to do their part. "The patients that I've seen successfully manage fibromyalgia really take a very active role," he says. "They make sure that they exercise regularly, that they go to sleep at the same time every night to maximize their sleep function, that they eat right, and that they participate in anxiety control and stress management. "
Regardless of the particulars of the treatment plan, fibromyalgia patients might find that they face an especially difficult challenge: unlike individuals who endure other chronic pain maladies, many fibromyalgia patients face shaky support outside the physician's office. Family, friends and co-workers can be skeptical of a long-term, broad-based disorder that lacks a conclusive diagnostic test and has an unclear cause. And patients can get fed up with it too. "Our society doesn't do well with syndromes like fibromyalgia," Mirazita says. "Often patients get frustrated and say, 'Can't you do anything? Isn't there a single pill I can take? Isn't there a procedure I could get?' They don't want to have to deal with it."
Fibromyalgia patients sometimes even get the brush-off from physicians, Greenspan says. "[Patients] suffer from depression, anxiety and lack of sleep," he says. "They complain of pain from areas of their body that, when examined and tested, show nothing is wrong," he says. As a result, some patients find that a diagnosis of fibromyalgia carries a tinge of stigma, he says. "Many physicians prefer not to deal with patients with fibromyalgia," Greenspan says.
To be sure, fibromyalgia casts a wide net in patients' lives. "It can be devastating," Mirazita says. Fibromyalgia can set off one trigger that leads to another, creating a cascade of trouble. "Any time somebody has a chronic pain problem, whether it's fibromyalgia or another syndrome, typically it affects many different spheres of their life, from their job function to their family relationships," Mirazita says. "But we tell patients, 'We'll try and find a medication that works well for you and we'll help you along, but you equally have to participate and make sure that you're doing your part.' It's sort of like a partnership in the treatment." NH