Anyone can develop fibromyalgia, although it affects around 7 times as many women as men. The condition typically develops between the ages of 30 and 50 but can occur in people of any age, including children and the elderly. It’s not clear exactly how many people are affected by fibromyalgia, although research has suggested it could be a relatively common condition.
Some estimates suggest nearly 1 in 20 people may be affected by fibromyalgia to some degree. One of the main reasons it’s not clear how many people are affected is because fibromyalgia can be a difficult condition to diagnose. There’s no specific test for the condition, and the symptoms can be similar to a number of other conditions.
Mistake # 1:Navigating fibro
Dealing with the constant, daily pain of fibromyalgia disorder can be tough. But the task can be even tougher if you fall into some common traps. Everyone makes mistakes, but there are some missteps that can make it even harder to cope with fibromyalgia disorder.
Mistake # 2:Not tracking your fibromyalgia pain
“The problem with fibromyalgia disorder is that patients are always in fibromyalgia pain so it’s hard to judge when things get better and when they don’t get better,” says Bruce Baethge, MD, a rheumatologist with 1Texas A&M Health Science Center College of Medicine and Scott & White Healthcare, in Temple. Keeping a fibromyalgia pain diary can help you keep track of the ebbs and flows of your.fibromyalgia disorder. And if you know when things are better, you can also figure out what made them better and what to do next time.
Mistake # 3:Expecting too much from medication
The U.S. Food and Drug Administration has approved three drugs for fibromyalgia disorder: Lyrica (pregabalin), Cymbalta (duloxetine), and Savella (milnacipran). These drugs may or may not work for you, or be only partially effective. They can also be expensive or may have side effects, including psychiatric problems, Dr. Baethge says.Be flexible about your options and be willing to switch if necessary. “Treatment for fibromyalgia disorder is not just one medicine. It’s a lifestyle,” he says.
Mistake # 4:Refusing to consider off-label drugs
Off-label drugs are those that are approved for use with one condition but frequently given to people with another condition. For instance, fibromyalgia disorder patients are often treated with antidepressants, even though not all antidepressants are specifically approved for this condition. Some people get dramatic relief with both older and newer generations of antidepressants.
Mistake # 5:Not exploring alternatives
What’s considered an alternative treatment in conventional medicine may not be for fibromyalgia disorder. For instance, Dr. Baethge says, “Yoga is not considered an alternative treatment for fibromyalgia disorder. We use stretching exercises as a mainstay of therapy.”Learning how to relieve stress through meditation, biofeedback techniques, or Tai chi, a Chinese martial art, can also be helpful. Check out the National Center for Complementary and Alternative Medicine for more on Tai chi.
Mistake # 6:Sticking with the wrong doctor
Believe it or not, there are physicians out there who still think that fibromyalgia disorder patients are making up the symptoms, probably because there’s so little known about the condition.Needless to say, this kind of doc isn’t going to explore all the options for your care. Don’t be afraid to switch if you think you may be seeing one of them.Look for a specialist, such as a rheumatologist, who focuses on fibromyalgia disorder. The Co-Cure Project has a list of patient-recommended docs by state.
Mistake # 7:Denying that you’re sick
Many patients diagnosed with fibromyalgia disorder will visit one physician after another trying to find a different opinion. By all means, get a second opinion. But refusing to accept the diagnosis after a second, third, or fourth opinion means you’re losing precious time, which could be spent learning about and managing the condition. Dr. Baethge recommends reading all you can about fibromyalgia disorder. “Education is key,” he says.
Mistake # 8:Not enlisting family support
Ask for the support of your spouse, parents, siblings, and children, but do it with open eyes. “Family interaction can be good or bad. It depends on how understanding the family is,” Dr. Baethge says. “A lot of times people get upset because their spouse or family doesn’t understand what they’re going through.”
Mistake # 9:Not reaching out to others
“Everybody needs a friend they can talk to about their illness,” Dr. Baethge says.Support groups can be helpful too.Find a local chapter of the National Fibromyalgia disorder Association or check out one of many online sites geared to help those with fibromyalgia disorder.
Mistake # 10:Not talking about it
You may be sick of thinking and talking about your fibromyalgia pain and, unfortunately, you might feel like your doctor, your family, and even friends are sick of it too. But clamming up isn’t necessarily your best bet.You can talk about fibromyalgia disorder pain in a way that can benefit not only you but also others with the same condition: by becoming an advocate for a fibromyalgia organization.
Mistake # 11:Feeling guilty
Don’t beat yourself up about being depressed, angry, frustrated, or scared.”It’s reasonable to become depressed,” says Dr. Baethge. “Any normal person who hurts all the time is going to feel that way.” And feeling guilty on top of being depressed is simply going to make the fibromyalgia pain worse, he adds.
Mistake # 12:Letting fibromyalgia disorder get to you
As with any chronic illness, there will be days when you feel down, maybe even way down. Finding activities you enjoy will bring balance and joy to your life.”Learning to do things takes your mind off the fibromyalgia pain,” Dr. Baethge says. “This tends to be better than sitting at home moping.” Many people have found that attending church, spending more time with a grandchild, or picking up a new hobby can help.
Mistake # 13:Taking life too seriously
“Humor is important,” Dr. Baethge says. “Do things that make you laugh or smile.” That could be as simple as watching a DVD that’s funny. And if your fibromyalgia pain prevents you from sitting through the entire show, watch it till you laugh, then pause it.
Mistake # 14:Not moving because it hurts too much
“Yoga, swimming, and walking have all been shown to be of benefit in managing chronic pain, and it’s really important for fibromyalgia disorder,” Dr. Baethge says. “It’s hard to get people to buy into this because when they first try it, they hurt even more.”Some people even forgo medication and try to get by on exercise alone to help with fibromyalgia pain. “They tend to do pretty well,” Dr. Baethge says. “They’re high functioning.”