10 Mistakes Fibromyalgia Patients Make you should know

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Dealing with the constant, daily pain of fibromyalgia can be tough. But the task can be even tougher if you fall into some common traps. Learn how to avoid mistakes that can make it even harder to cope with fibromyalgia.

Navigating fibro

by Amanda Gardner

Dealing with the constant, daily pain of fibromyalgia 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.

Learn how to avoid them and make living with fibromyalgia that much easier.

Not tracking your pain

“The problem with fibromyalgia is that patients are always in 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 Texas A&M Health Science Center College of Medicine and Scott & White Healthcare, in Temple.

Keeping a pain diary can help you keep track of the ebbs and flows of your fibromyalgia.

Expecting too much from medication

The U.S. Food and Drug Administration has approved three drugs for fibromyalgia: 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 is not just one medicine. It’s a lifestyle,” he says.

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 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.

Not exploring alternatives

What’s considered an alternative treatment in conventional medicine may not be for fibromyalgia.

For instance, Dr. Baethge says, “Yoga is not considered an alternative treatment for fibromyalgia. 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.

Sticking with the wrong doctor

Believe it or not, there are physicians out there who still think that fibromyalgia 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. The Co-Cure Project has a list of patient-recommended docs by state.

Denying that you’re sick

Many patients diagnosed with fibromyalgia 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. “Education is key,” he says.

 

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.”

The cure for this: Direct family members to any of a number of websites that can explain the disease, such as the National Fibromyalgia Association, the Mayo Clinic, and the Johns Hopkins Arthritis Center.

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 Association or check out one of many online sites geared to help those with fibromyalgia.

Not talking about it

You may be sick of thinking and talking about your 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 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.

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 pain worse, he adds.

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