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Dream Catchers

Researchers bring hope to fibromyalgia syndrome patients suffering from pain and sleep deprivation
Dream Catchers


January 2006

by Natalie Gutierrez

Lack of sleep — most people take it lightly, literally, thinking they can train themselves to operate on less sleep than the recommended eight hours a night. Yet scientific evidence shows that chronic sleep deprivation is a risk factor for the onset of depression, anxiety and substance abuse disorder. It also is associated with reduced cognitive ability and could increase the severity of illnesses such as diabetes, hypertension and obesity.

Although some people choose to skip getting their necessary sum of slumber, others miss out on it by no choice of their own.

For 12 years Bebette Rubio considered herself lucky if she got two full hours of sleep a night. The 40-year-old mother of three suffers from fibromyalgia syndrome, a common clinical condition marked by widespread body pain, a form of body tenderness, fatigue, morning stiffness and disrupted sleep. Fibromyalgia affects 1 in 50 Americans, mostly women, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. The relationship of fibromyalgia syndrome body pain to the insomnia of the syndrome is not well defined.

"I would lie awake at night feeling helpless," Rubio said. "When I’d wake up in the morning, I’d feel disoriented and I wasn’t able to function properly for the rest of the day. The discomfort of the pain I felt, coupled with the sleepless nights, was becoming unbearable. My whole family was affected by my illness and sleeplessness."

Rubio said she was finally able to find relief when she met I. Jon Russell, M.D., Ph.D., associate professor of medicine at the Health Science Center, who had just completed a clinical study of a drug called sodium oxybate.

"No medication is currently approved by the U.S. Food and Drug Administration for the treatment of fibromyalgia syndrome; physicians treat the disorder with medications officially approved for other purposes," said Dr. Russell, who is the study’s lead researcher. "This study clearly demonstrated that sodium oxybate is a novel option of therapy for patients coping with fibromyalgia syndrome. We need to examine the potential application for sodium oxybate in greater detail. But in the meantime, it seems reasonable to treat selected patients from the clinic."

Dr. Russell, along with researchers from the Oregon Health Sciences University in Portland, reported that sodium oxybate, currently approved for the treatment of cataplexy in patients with narcolepsy, significantly improved patients’ self-reported perceptions of their own pain and enhanced the quality of their sleep. At the higher of two dosages studied, the drug also reduced tenderness patients experienced during examinations in the doctor’s office. Sodium oxybate is marketed as Xyrem® in the United States by Orphan Medical, a subsidiary of Jazz Pharmaceuticals, which funded the study. The study results were presented by Dr. Russell at the American College of Rheumatology’s Annual Scientific Meeting in San Diego in November.

"Experts suspect that fibromyalgia syndrome dates back to the 1400s, yet it is a condition that is often misunderstood and misdiagnosed. It need not be so," Dr. Russell said. "The direct medical costs of the syndrome in the United States exceed about $12 billion annually. Patients often visit several different doctors before they are properly diagnosed. Many patients leave their place of employment or reduce their workloads because of pain, sleep deprivation and other symptoms."

Dr. Russell said Xyrem® represents a giant leap forward in the treatment "tool kit" for patients suffering from fibromyalgia syndrome.

"Fibromyalgia research has advanced a great deal since I came to the Health Science Center 27 years ago. We’ve gone from having no medications to treat the symptoms to having five that are safe and effective," Dr. Russell said. "It is vital to continue studying this debilitating syndrome and educating more physicians about it so that patients can be diagnosed correctly and helped quickly. Fibromyalgia syndrome should be considered any time a patient complains of musculoskeletal pain in more than one body location." The Health Science Center is becoming well known for its successful fibromyalgia studies, and has enrolled patients from across the United States and Canada.

Rubio said she can see the light at the end of the tunnel, thanks to Dr. Russell.

"I feel less pain and I’m now getting four full hours of sleep and am working toward sleeping for eight full hours. With Dr. Russell’s help, I know I can achieve that. I’m so grateful for the work that Dr. Russell and his colleagues have done for me and for so many others who suffer the side effects of fibromyalgia syndrome," Rubio said. "I don’t wake up with a foggy, groggy feeling, and my fatigue and moodiness have diminished. I don’t take sleep for granted. I’m looking forward to enjoying and benefiting from more sleep, and to enjoying life more with my family."

For more information or to enroll in a fibromyalgia syndrome study at the Health Science Center, call Wanda Haynes at (210) 615-6611.








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