It hurts everywhere

Imagine waking up and your first thought, the first thing out of your mouth is, “I’m so tired.” Imagine night after insufferable night of not sleeping, day after day of pain so all-encompassing that every fiber of your being aches. Imagine repeated, middle-of-the-night trips to the emergency room, utterly wracked with pain, yet frustrated and unable to explain to equally frustrated doctors where and why it hurts, when you can’t comprehend it yourself.

This is what life is like for people with fibromyalgia, a mysterious disease affecting the body’s connective tissues and causing chronic, widespread musculoskeletal pain. Like most autoimmune diseases, it affects women nine times more often than men. The fibrous tissues, muscles, tendons and ligaments are stiff and tender, causing swelling, numbness or tingling of the extremities, irritable bowel syndrome, migraine and tension headaches, thyroid imbalances, sleep disturbances, depression and fatigue.

Confronted with increasing neck and back pain, headaches, fatigue and memory problems, finally being told she had fibromyalgia was ironic relief for Reno teacher and former runner Sheila Mills, who was diagnosed in January.

“It changed my whole life around,” says Mills, 41. “You think you’re dying. You wonder what it could possibly be because there are so many different things going on in your body. You never get any rest, and you can’t deal with the pain. I’m active and have always had a lot of energy, but the depression gets you, and you think, ‘What the heck’s happening? Where’d my life go?'”

Two years before she was diagnosed, Mills, at the mercy of gripping pain, drove herself to the emergency room one midnight. Three hours later, there were more questions than answers.

“Sitting there, I thought, ‘Maybe it’s me. Maybe I am nuts,'” she recalls. “Then they tell you, ‘I don’t know. See your regular doctor.’ You feel like you don’t matter, or they don’t believe you, or you’re crazy. You never feel like you’ve slept. It’s hard to start your day that way. The stress is really hard on your body.”

Also coping day-to-day is Jeff McCool of Reno. Suffering sweeping pain in his hands, neck, shoulders, back and hips, McCool consulted a succession of doctors before he was diagnosed three years ago.

“The pain became so unbearable,” says McCool, 48. “I had bursitis in both my hips, my shoulder. I could hardly walk or lift my arms.”

Fighting fatigue and pain is exhausting in itself, but it’s the sleep apnea that really takes a toll on many sufferers.

“I sleep for an hour or two a night,” McCool says. “I try and doze, do this for three weeks, then crash for 24 hours. Then right back to the cycle of no sleep. If I sleep all night, on a regular basis, then I can function.”

While cancer and other diseases are often perceived as death sentences, fibromyalgia patients say that diagnosis feels like a life sentence.

“I like to say that the doctor tells you, ‘I’ve got good news and bad news: The good news is you have fibromyalgia, and you’re going to live. And the bad news is you’ve got fibromyalgia, and you’re going to live,'” McCool says, chuckling.

McCool credits himself as being generally positive and upbeat, although he admits there have been times he was so worn down that he thought it would be easier if his life would just end.

“Here I am, a big, grown guy, and I’ll break down and cry sometimes, it’s just so much,” he says.

McCool recognizes the additional, societal pressure on men to resist succumbing to debilitating pain—a serious topic that he can’t help but laugh about.

“Leave it to me to catch a chick’s disease! There’s a lot more pressure for a man. I think I waited too long to consult with my doctor because I didn’t want to admit that the pain was so bad I couldn’t work anymore.”

One of modern medicine’s most consistent enigmas, fibromyalgia has no known cause or cure. According to Hospital Physician, fibromyalgia “consumes tremendous economic and social resources, in terms of individual loss of mobility, reduced productivity and disability,” and is “a major cause of disability in the United States, and the second most common disorder seen by rheumatologists in North America.”

A combination of medication, physical therapy and antidepressants are routinely prescribed for fibromyalgia, and cutting-edge research indicates new advances in the scope and treatment of the disease. After years of scrutinizing the muscles and joints, researchers are now focusing on the brain, since it’s the brain’s gray matter that responds to pain in the body. Stress and physical or psychological trauma seems to be at the root of, as well as aggravating to, fibromyalgia.

“Anything that will produce inflammation can trigger the machinery that produces a stress shift in the hormone pattern,” says Michael J. Powell, D.O., of Sacramento’s Fibromyalgia Treatment & Learning Center.

The shift appears to be provoked by emotional and physical stresses and hormonal changes that affect the balance of pituitary-regulated hormones. Powell says there are several biological pathways that can lead to a self-perpetuating fibromyalgia state: “I would almost like to change the name of the condition, but the hormonal state is that of Post-traumatic Stress [Disorder].”

Powell also believes there’s a connection between fibromyalgia and fungus, mold, sinus and allergy infections, the latter of which recur in trauma patients.

“You work on the PTSD, the hormones and the mold, and things will go very well. Nutrition is also [key].”

Northern Nevada rheumatologists see a steady stream of fibromyalgia patients—usually desperate by then—who’ve waited months to see a specialist. Thorough blood tests abruptly become irrelevant: The crucial test is hands-on, involving 11 or more of 18 identified tender points in the body.

Before her diagnosis, Sparks schoolteacher Karen Mazzaferri remembers how she spent the first month of a summer break on her sofa, unable to shake a cold and aching in her limbs, neck and shoulders. Now, she treats her fibromyalgia with minerals, medicine and other modalities including acupuncture, Pilates and a good night’s sleep.

“My pattern was to go to sleep and wake up 40 minutes later,” says Mazzaferri, 48. “So I never got into the deep sleep, where your muscles rejuvenate and everything rebuilds. If I don’t sleep for a week, then I’m really tired, my muscles hurt, and I feel like I’m walking through quicksand.”

A survivor of past personal trauma, Mazzaferri has moved on and endeavors to maintain balance, peace and good nutrition. Consciously avoiding the factors that, for her, often trigger a painful attack—no sleep, refined sugars and mental stress—she is representative of patients trying to control fibromyalgia, adamant that fibromyalgia won’t control her.

By focusing on stress reduction, getting sleep and being attentive to the body, Powell believes it’s actually possible to reverse the extremes of fibromyalgia.

“You need a dedicated patient and clinician,” he says. “There are a few doctors that have dedicated themselves to conquering this. There’s no magic pill that will reverse it, but it’s absolutely reversible. You can ask the same thing of Post-traumatic Stress Syndrome. If you get that support, address the trauma and start sleeping again, [it’s possible].”

Still reeling from the diagnosis, but eager to embrace a multi-faceted approach to healing, Mills is in it for the long haul.

“It’s a double-edged sword because the disease makes the stress worse, and the stress makes the disease worse. How do you balance that?" Mills asks. "[Fibromyalgia] may not shorten your life, but it takes the quality of your life. All the research has to make a difference. I look around at my kids’ pictures, my husband, the kids I work with and all the good things in my life. I tell myself I could be so much worse off. There are so many people that are. So I’m really very lucky."