Fibromyalgia is one of the most common reasons for chronic pain, affecting about 5 million Americans. It’s also one of the most misunderstood. The most common myth, doctors say, is that fibromyalgia is “all in your head.”
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“Many of those with fibromyalgia are afraid that the culture does not believe that fibromyalgia is a real disease. And they are afraid people will label them as ‘lazy’,” says rheumatologist Carmen Gota, MD. “There’s an issue of credibility that can cause a lot of stress for them.”
What can help with this? Doctors say education goes a long way toward helping people with fibromyalgia and their loved ones understand and deal with this debilitating illness.
“Often, family members don’t understand what a patient is going through or what the diagnosis means,” says psychologist Sara Davin, PsyD.
She says this, in itself, can create stress in families. And for fibromyalgia patients, more stress can actually contribute to more pain. Recognizing the role stress plays is critical when treating fibromyalgia, she says.
The pain is real
It’s easy for people to understand that recovering from surgery or a broken bone is painful. But it’s harder to grasp the generalized pain and fatigue of fibromyalgia.
“Even if people don’t see the cause of the pain, that doesn’t mean it isn’t real,” Dr. Gota says.
To help with this, she suggests that fibromyalgia patients arm themselves with the facts about their condition and share it with others.
But Dr. Davin cautions against expending too much energy trying to convince others. “Realize that their response might vary from what you want, but that you can’t control that. You can control how you let it affect you,” she says.
Part medical, part psychological
“For most cases, fibromyalgia does not respond to purely medical care or purely psychiatric care,” Dr. Davin says.
Fibromyalgia can create a vicious cycle of symptoms. Stressful situations can cause people with fibromyalgia to feel anxious or depressed. And it can disturb people’s sleep.
The body then begins to produce abnormal levels of pain-related chemicals. That triggers tenderness, pain, fatigue and cognitive difficulties that further increase stress and anxiety.
“Several studies suggest that up to 80 percent of people with fibromyalgia have symptoms of depression,” Dr. Davin says. “You can’t get an optimal medical outcome if you don’t also deal with the psychological factors.”
Treatment is within your control
If you have fibromyalgia, here are three ways to take control of your treatment:
- Manage stress. “I tell my patients that they can have some control over their condition by first managing their stress,” says Dr. Davin. “It can have a real impact on their pain and fatigue.” But Dr. Gota says this is often a difficult thing for her patients to hear, especially those who feel helpless to fight against the pain.
- Exercise and manage your weight. Dr. Gota says many patients believe they can’t exercise because of their pain and fatigue. But 40 percent of patients with fibromyalgia are obese and 30 percent are overweight, and studies clearly show that exercise and weight loss can help ease fibromyalgia symptoms. The American Fibromyalgia Syndrome Association recommends starting with mild exercise in short intervals (such as five minutes at a time) to keep the muscles fit while not over-taxing them.
- Get involved in the community. “Live as much of a regular life as you can,” says Dr. Davin. “People who are working, volunteering or doing something that gives them a sense of fulfillment do much better.”