"I had pain all over my body, and I had migraines and fatigue. I could take a two-hour nap in the afternoon and still go to sleep at night, but I never felt rested," says Martin, now 47. At first, she figured this was a normal part of getting older. "It really got to point where I was not productive in my life. Going to work every day was a struggle. I never wanted to do anything, even for enjoyment. I would go to the movies and just think about the pain," she says.
Martin's doctors ran several tests before concluding that she has fibromyalgia, a complicated syndrome characterized by soft-tissue pain, sleep disturbances and fatigue. Most common in women, fibromyalgia symptoms usually begin in early middle age, but may start as early as the teens or 20s. It's tricky to diagnose, say doctors, because the symptoms mimic those of arthritis, thyroid disease, Lyme disease and depression. The causes of fibromyalgia are just as mysterious.
"Our best theory is that there is a miscommunication between the endocrine system and our nervous system," says Dr. Matthew Karshner of Southeast Physical Medicine and Rehabilitation. "This results in impulses that are sensed as pain or increased sensitivity to touch." Fibromyalgia triggers might include injuries, car accidents and muscle strain. Emotional and environmental stressors, varying hormone levels, sleep apnea, migraines and irritable bowel syndrome may also be related.
Fibromyalgia is a diagnosis of exclusion, meaning doctors must rule out other diseases before making a diagnosis, says Dr. Jimmy Bowen, physiatrist at Orthopaedic Associates of Southeast Missouri.
"There are no markers where we can say yes, you definitely have this, or no, you don't. There's no blood test. We do a blood test to make sure you don't have other diseases that act similarly," Bowen explains.
Doctors test for fibromyalgia beginning with a physical exam and discussion about the patient's family, social, medical and surgical history, says Karshner. Fibromyalgia pain is felt on both sides of the body, above and below the waist, for six weeks or more. If 11 of 18 designated "touch points" are interpreted by the patient as painful, this "heightened sensitivity to pain" is a likely sign of fibromyalgia, says Bowen.
Treatment involves behavioral therapy to learn to control the pain and its triggers, aerobic exercise and aqua therapy. Medications, including antidepressants and muscle relaxers, can help improve sleep patterns and relieve pain.
"You need to use conservation of energy," adds Bowen. "If you get up in the morning and you feel good, it is not a day to clean the whole house. Maybe clean one or two rooms and save the rest for later. If you have a dollar's worth of energy and you spend $1.50, you're going to hurt more. If you spend 90 cents, you'll tend to do better. It's better to be active than not be active, but you need to find the happy medium."
For 59-year-old Sheila Brown of Cape Girardeau, soft-tissue pain has been a daily burden for most of her life.
"I just hurt all over. I always felt like that, even when I was young. I could feel the springs through my mattress because my body is really sensitive," she says. "There are a lot of people that poke you or jab you when they're talking to you, and that makes me cringe. It's hard to tell people, 'Don't do that.'"
Brown was diagnosed with fibromyalgia 10 years ago and is still trying to find a treatment that works. She took one medication until she noticed vision changes, then switched to another, which caused hair loss but relieved some of the pain. Exercise helps, says Gordon, but she hasn't been able to keep up this winter and the pain has gotten worse. She visits her doctor regularly to assess her pain based on touch points.
Gordon is proof that fibromyalgia can develop at any age, and that pain and fatigue are never a normal part of aging -- so don't be afraid to mention these symptoms to your doctor, say Bowen and Karshner.
"We think if you wait a long time, the nervous system becomes sensitized and therefore even further lowers the threshold to feel pain," says Bowen.
As another patient dealing with fibromyalgia, Martin agrees. Medication, light exercise and cortisone shots have helped her feel better, and now she rarely misses work due to pain or fatigue.
"When the doctors test everything and don't find anything, it might make you think it's all in your head, but it's not. Relief is out there," she says. "Push through that and keep going. It will get better."