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.
1. 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. And if you know when things are better, you can also figure out what made them better and what to do next time.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.
7. 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.
8. 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.
9. 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.
10. 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.
11. Letting fibromyalgia 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 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.
12. 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 pain prevents you from sitting through the entire show, watch it till you laugh, then pause it.
13. 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,” 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 pain. “They tend to do pretty well,” Dr. Baethge says. “They’re high functioning.”
Content courtesy of Amanda Gardner.