Jackie Yencha hit the wall at age 22. "I couldn't handle the pain any more," she says. "I was terribly fatigued, not feeling well, not sleeping well." But it took Yencha seven years to get an accurate diagnosis of fibromyalgia.
Her first diagnosis -- reflex sympathetic dystrophy -- resulted in experimental surgery that did nothing to relieve her pain. In fact, numerous surgeries followed to correct the problems from that procedure. Years went by. Yencha was still in pain, still getting little sleep.
"I became desperate ... the pain never got better," Yencha tells WebMD. That's when she headed to the Cleveland Clinic, where comprehensive testing showed she had fibromyalgia.
"You need to find a doctor who will listen and who really knows fibromyalgia," says Yencha.
"A lot of doctors out there don't know much about it," she explains. "We hear from people all the time ... people in small towns who say no one here has ever heard of this."
What Is Fibromyalgia?
Fibromyalgia is a chronic condition that causes disabling pain all over the body -- as well as stiffness and tenderness in muscles, tendons, and joints, experts say. It is most common among women ages 35 to 55.
Although it's one of the most common muscle problems, the cause is a mystery, fibromyalgia researchers say. There is no inflammation or joint damage, as occurs with arthritis. There is no damage to internal body organs, as with rheumatoid conditions like lupus. It is called fibromyalgia syndrome because it is identified by a collection of symptoms.
Indeed, the list of possible fibromyalgia symptoms is a long one:
- Chronic muscle pain
- Muscle spasms or leg cramps
- Sleep problems
- Severe fatigue
- Morning stiffness
- Difficulty concentrating
- Skin sensitivities
- Intestinal problems
But these are also common to liver disease, lupus, Lyme disease, thyroid dysfunction, heart disease, arthritis, degenerative joint disease, chronic fatigue syndrome, irritable bowel syndrome, and other disorders -- and therein lies the difficulty in diagnosing fibromyalgia.
How fibromyalgia develops is also a mystery. "The onset can be fairly abrupt, triggered by a motor vehicle accident or a mishap at work," says Steven Berney, MD, chief of rheumatology at Temple University Health System in Philadelphia. "Very quickly the condition sets in. You feel bruised for the next couple of days, but there's the expectation that whatever is disrupted will heal. When the pain doesn't wear off, it becomes clear something else is going on."
More typically, there is a gradual onset, Berney tells WebMD. "The pain becomes more severe over time. That's more difficult to diagnose. You're looking for something that set this off, and you can't find it."
Fibromyalgia research shows that the disorder seems to run in families. Recent studies show that genetic factors may predispose some people to fibromyalgia. An illness or injury that causes trauma to the body can make subtle fibromyalgia symptoms more apparent -- and more troublesome, according to the National Fibromyalgia Association.
"The pain is very real and markedly impedes their lives," Berney says. "People who were very active become disabled by pain and fatigue. 'I want my life back' becomes the charge."
The Tender Points of Pain With Fibromyalgia
While it's not clear what exactly triggers fibromyalgia, researchers are homing in on the basic mechanisms. Fibromyalgia is considered a disorder of pain regulation. Patients have higher levels of two substances -- a nerve chemical called substance P, and nerve growth factor in the spinal fluid. They also have lower than normal levels of the brain chemical serotonin, as is also true with people suffering from depression and anxiety.
All this produces a dysfunction in the body's ability to process pain -- and creates supersensitive nerves throughout the body, explains Andrew J. Holman, MD, a rheumatology specialist at the University of Washington in Seattle. To make things worse, people with fibromyalgia have difficulty getting a good night's sleep -- so they constantly wake up feeling fatigued.
The result: Everyday sensations of discomfort and pain are amplified beyond the norm. Slight bumps and touches can cause disabling pain if you have fibromyalgia. This pain can be aggravated by outside factors -- noise, weather changes, and stress.
To figure out what's going on, doctors diagnose fibromyalgia by examining specific "tender points" on the body. "There are 18 specific tender points -- specific locations that are tender for everyone," Holman tells WebMD. "But for people with fibromyalgia, these points are significantly more tender. People are more sensitive at those points. A dysfunction in the central pain processing amplifies their sensations."
Tenderness or pain in at least 11 of these 18 points is the hallmark of fibromyalgia, says Holman. Also, the pain is widespread on both sides of the body -- neck, buttocks, shoulders, arms, upper back, and chest. Tender points are around the elbows, shoulders, knees, hips, back of the head, and the breast bone.
Doctors test these tender points to make the fibromyalgia diagnosis. Yet it's not always so clear-cut what the widespread pain indicates. It takes a careful ear to discern what's really going on, explains Martin Grabois, MD, chairman of physical medicine and rehabilitation at Baylor College of Medicine in Houston.
"Physicians are used to diagnoses like a herniated disc, where there's pain in a specific location," Grabois tells WebMD. "That's not so with fibromyalgia. Some pain is above the waist, some below the waist, at the shoulders, etc., and there are sleep disturbances, fatigue. These are symptoms of a number of diseases. They are not isolated to fibromyalgia."
The muscle pain can range from mild discomfort to severe enough that it limits a person's everyday life -- including work and social activities. The pain is often described as burning, gnawing, throbbing, stabbing, or aching. When the person relaxes, the pain may be more noticeable -- and less so when they're active.
Sleep Dysfunction Affects Pain Sensitivity
The sleep problems associated with fibromyalgia -- insomnia and fragmented sleep -- may be the root of the pain, says Holman. It deprives people of stage IV deep sleep, the non-rapid-eye-movement sleep that helps us feel refreshed in the morning.
Fibromyalgia research is showing that an automatic arousal is triggered in the brain during sleep, Holman tells WebMD. "The basic fight or flight response is activated at night while you're sleeping. The hormones epinephrine and adrenaline are released as the body becomes vigilant, aware. That causes the transition from deep restorative sleep into light sleep."
These disruptions rob the person of restorative processes that occur during deep sleep, he explains. "It's during deep sleep that most growth hormone is produced. Muscles regenerate and heal, and neurotransmitters are replenished in the brain. The body's ability to recuperate from the day's stresses -- including small pain sensations -- is believed to occur during deep sleep."
The brain has a "pain threshold," Holman adds. "During the day, low signals in the brain can be ignored and you continue doing what you're doing. But if the system is overwhelmed, at night the normally nonpainful stimuli become painful. Lack of deep sleep amplifies all sensations -- what we call central pain amplification."
"When people finally get deep restorative sleep, fibromyalgia improves substantially," Holman says. "But the best strategy to treat the sleep is not a sleeping pill. The strategy is to turn off the arousal in the brain stem that's interrupting the sleep. We want to allow people to sleep."
Difficulty Diagnosing Fibromyalgia
As with chronic pain, sleep problems are common -- and it's not always easy diagnosing fibromyalgia syndrome as the problem.
"The primary care doctor is at somewhat a disadvantage," Berney tells WebMD. "There are no specific tests for fibromyalgia diagnosis. To make a diagnosis, one has to make sure it's not something else -- lupus, thyroid dysfunction, rheumatoid arthritis. The list of possible diseases associated with these symptoms is fairly extensive. It's the vagueness of the symptoms that delays the diagnosis."
"You won't necessarily have all of the symptoms of these disorders, but you can have a component of each," says Grabois. "Patients often go to a lot of doctors trying to figure out what's wrong. The doctors are not familiar with fibromyalgia syndrome so they don't necessarily know the diagnostic criteria for it -- and they don't necessarily check for it."
Also, the level of misery is different for each patient, he points out. "Some have pain worse than others." For some, the pain is continuous. For others, it comes and goes. Some people wake up feeling like they have been exercising all night.
Getting a Correct Diagnosis
If you have seen several doctors -- yet still don't have relief -- see a specialist, Grabois advises. The National Fibromyalgia Association provides a list of specialists who understand the disease -- experts in pain management, rheumatology, and neurology.
Prepare for your appointment. Before meeting with the doctor, prepare to accurately communicate your symptoms. Think about these:
- What your symptoms are -- and when they started.
- How long they've been going on -- and whether it's been continuous, or off and on.
- Have you noticed any triggers for your symptoms?
- How do your symptoms affect you? Is pain sharp, a dull ache, does it cause nausea?
- How do symptoms affect your feelings? Does pain make you depressed or anxious?
- How do symptoms affect your work or home life? Are you very fatigued and can't do normal activities?
- What drugs, herbal remedies or supplements are you taking?
- What surgeries have you had?
- What current treatments has another doctor or specialist prescribed?
Keep a pain journal. "Doctors will listen more if you keep a daily record of how you feel -- even if it's just for one month or for three months," says Yencha. In your pain journal, make note of intensity of pain (on a scale of 1 to 10), what you were doing at the time, and how you felt emotionally. It will help you and your doctor see patterns in the pain, she says.
There are no lab tests or scans that can help doctors diagnose fibromyalgia. But various blood tests can help them rule out other medical conditions. Some patients need to have respiratory problems checked or get a sleep apnea study, Berney says. "On occasion, the problem is sleep apnea or snoring, both of which disturb sleep."
Find the right doctor. It's important to find a doctor who cares about you -- and wants to help you, says Mary Rose, PsyD, clinical psychologist and behavioral sleep specialist at Baylor College of Medicine in Houston. "It's very common, physicians having very little time. Sometimes they don't really hear everything a patient says."
Never stay with a physician you don't like or trust, Rose tells WebMD. "It's not all in your head -- and while you may be depressed, depression is not the whole picture of fibromyalgia. We see depression with cancer, cardiac disease, and we know those are real. Pain is very frustrating. In the medical community, we probably don't have the empathy for pain that we should."
Get emotional support. A therapist's support can be helpful when you're dealing with fibromyalgia, Rose notes. "Fibromyalgia has such a stigma. Sometimes it is really helpful to see a therapist -- not because you're crazy, but because you have to deal with pressure and stigma. It's nice to have someone objective to talk to."