The hysterectomy had gone horribly - and traumatically - wrong. Her bladder and urethra had been punctured, so fluids gushed from her body. Six additional surgeries were needed over the next six months to repair the sloppy surgery.
Finally after a slow and long recuperation, the 47-year-old woman we'll call Lucy had the energy to get back to work and life.
As part of her recovery, she was walking four miles a day. She'd lost 20 pounds and felt good for the first time in months.
Then out of the blue, Lucy says, "My body betrayed me." She ached all over. "The doctor tried to touch my shoulders during his exam, and I couldn't stand it - I had to ask him to stop," Lucy recalls.
After a number of tests to rule out other conditions such as Lupus and different types of arthritis, Lucy found out her unpredictable pain and other symptoms were caused by fibromyalgia.
What is fibromyalgia?
Chronic pain is what fibromyalgia is all about. The pain can show up without warning anywhere on the body. This pain can be accompanied by all sorts of other symptoms, ranging from fatigue and sleep disorders to digestive problems, and other conditions can overlap the fibromyalgia.
Lucy says sometimes the pain will start in her neck, stay there for a few days and then slowly move down to her feet. These episodes usually involve only one side, she says.
And sometimes the pain is excruciating. Lucy has endured a couple times when "It's like electrical shocks were running through my body in waves. They'll stop for a couple of minutes and then here comes the next wave."
She'll go to an emergency clinic and get a shot to relieve the debilitating misery she says can last anywhere from 24-72 hours.
- More women than men suffer from this condition
- Men and children can also have fibromyalgia
- An estimated 10 million Americans are affected
- While it's usually diagnosed between ages 20-50, prevalence increases with age
- According to the American College of Rheumatology, about 8 percent of people over the age of 80 have it
Is fibromyalgia the same as chronic fatigue syndrome?
No. Stuart Silverman, M.D., a rheumatologist with Cedars-Sinai Hospital and an internationally renowned expert in fibromyalgia and osteoporosis, says the two conditions can overlap but are different.
"For someone with chronic fatigue, it's hard to get out of bed or off the couch. And while they can have muscle aches and weakness, pain is not their primary complaint," Dr. Silverman says, who is also a clinical professor of medicine and rheumatology at UCLA (University of California at Los Angeles).
Likewise, a fibromyalgia patient can - and often does - have extreme tiredness or fatigue, but they aren't disabled by it. Lucy, for example, works 40 hours a week, but sleeps most of Saturday and Sunday.
As Dr. Silverman says, "Pain is exhausting."
What are the symptoms of fibromyalgia?
In addition to what Dr. Silverman calls "everywhere pain," people living with fibromyalgia can also experience a number of other health issues, including:
- General low energy
- Fatigue and utter physical exhaustion
- Disturbed sleep of all descriptions
- Irritable bowel syndrome
- Bladder problems
- Headaches and migraines
- Muscle twitching, stiffness and aching
- Vision and hearing problems
- Skin rashes
What causes fibromyalgia?
Genetics probably play a role in fibromyalgia as it's often seen in families. Lucy thinks that one of her sisters may have it.
Dr. Silverman says that the disorder often presents itself after a true trauma. One of his patients, he said, was a bank employee and had a gun held to her head during a robbery.
Lucy's surgical trauma was likely a trigger for her, although when asked how long she's had fibromyalgia, she says, "maybe always." She remembers having all-over body aches as a child.
New research into the causes are focusing on abnormalities in the central nervous system and low levels of certain brain chemicals.
How is fibromyalgia diagnosed?
While there are no blood tests or imaging studies for fibromyalgia, the diagnostic criteria as established by the American College of Rheumatology (ACR) in 1990 are well-defined. They include:
- Widespread pain both above and below the waist - in four quadrants of the body
- Pain or tenderness when pressure is applied to at least 11 of 18 so-called tender points located around the body
- Physicians also order tests to rule out other conditions that may be causing chronic pain
Dr. Silverman's published research indicates that most people go to an average of seven doctors before arriving at a proper diagnosis.
In looking for help, Dr. Silverman suggests making calls to internists, rheumatologists, neurologists and primary care physicians to learn if they believe in fibromyalgia. Some physicians do not recognize it as a distinct diagnosis. Secondly, he says, ask the office manager if the physician diagnoses and treats fibromyalgia and currently cares for patients with the disorder.
How is fibromyalgia treated?
Fibromyalgia has no cure, but there are a number of ways to manage its symptoms. The U.S. Food and Drug Administration has approved three medications to treat fibromyalgia:
- Cymbalta (duloxetine hydrochloride)
- Lyrica (pregabalin)
- Savella (milnacipran)
Antidepressants are also often prescribed. Dr. Silverman explains these medications are used because depression and pain share the same neurotransmitters. Regulating serotonin and norepinephrine treats both problems.
Here are some of the other commonly prescribed medications:
- Desyrel (trazodone)
- Effexor (venlafaxine)
- Elavil (amitriptyline)
- Flexeril (cyclobenzaprine)
- Lexapro (escitalopram)
- Lunesta (eszopiclone)
- Mucinex (guaifenesin)
- Neurontin (gabapentin)
- Pristiq (desvenlafaxine)
- Prozac (fluoxetine)
- Sinequan (doxepine HCl)
- Soma (carisoprodol)
- Skelaxin (metaxalone)
- Wellbutrin (bupropion hydrochloride)
- Ultracet and Ultram (tramadol hydrochloride)
Other management strategies
In addition to her medications, Lucy has massages twice a month, goes to a chiropractor regularly and has been under the care of an acupuncturist from time to time. She also takes herbal medicines and drinks herbal teas.
Dr. Silverman, who is a member of the American College of Rheumatology, says the best thing a person with fibromyalgia can do is to have a healthy lifestyle that includes healthy foods, exercise and stretching.
"Many patients handle their pain by doing nothing," he says. "But getting into good condition with regular exercising helps the muscles get stronger so they don't have so many aches and pains."
Dr. Silverman adds that exercise also produces endorphins which are the body's natural pain killers.
A team approach is best
Fibromyalgia is a complex condition, so Dr. Silverman suggests a multidisciplinary approach that cares for the person's whole health. The team might include, he says, a physical or occupational therapist, a nutritionist, and a psychologist to assist with the emotional issues that accompany the disorder.
"These would be in addition to the patient's champion primary care, internist, rheumatologist or neurologist," Dr. Silverman says.
Accepting and managing
Lucy has been living with the official diagnosis of fibromyalgia now for about six years. After some trial and error, she has found the medications that work for her. She takes Cymbalta and Neurontin everyday, which she says have helped her tremendously. Most days are good, though her energy remains low. And when the pain gets very bad, she takes Ultracet as needed.
It was depressing at first, Lucy says, never knowing when the pain would come out of nowhere and that the disease was controlling so many parts of her life.
But Lucy has finally accepted her fibromyalgia, something she says that's been an important part of learning to live with it.