Dos and Don'ts of Living With Fibromyalgia Pain

If you're one of the estimated four million U.S. adults living with fibromyalgia , you know that pain, fatigue, and related problems like sleep difficulties can make it difficult to function - especially when you experience a fibromyalgia flare-up.

Fibromyalgia is defined by lasting pain throughout your body, which is often accompanied by tenderness in your muscles, joints, and other soft tissues. The causes of fibromyalgia aren't exactly clear, although in some cases it may be linked to physical or emotional trauma.

It's difficult to come up with one-size-fits-all advice for dealing with fibromyalgia pain and fatigue, since the condition affects everyone differently. "Some people may be working 80 hours a week, while other people can't function at all. And it's all under the fibromyalgia title," says Daniel Arkfeld, MD, DDS , a rheumatologist at Keck Medicine of USC at the University of Southern California in Los Angeles.

Still, there are some widely applicable nuggets of advice for living with fibromyalgia - tips that can help you reduce or distract from pain and fatigue, and make the most of the energy you have. Here are some of those rules for fibromyalgia self-care.

Do Listen to Your Body

People with fibromyalgia may not have the same ability to get through routine daily tasks before fatigue sets in - especially if fibromyalgia pain is also getting in the way.

Although it's not exactly scientific, Dr. Arkfeld says that in the case of someone with fibromyalgia, you can think of energy as a resource that's easily exhausted. "If they have 10 energy boxes a day, and they are being asked to use 20 energy boxes, they're going to be chronically fatigued," he says.

That's why it's important to take note of how your body feels, rather than ignore signs that fatigue is setting in - which may be accompanied by symptoms like greater pain throughout your body, difficulty concentrating, or a worsening mood.

When it comes to fatigue in fibromyalgia, there may be complex processes in your brain at work. One study used MRI scans to measure the volume of different brain regions in 138 participants with fibromyalgia, and found that a smaller thalamus (near the center of your brain) and a larger right inferior temporal cortex (on the lower right side of your brain) were both linked to higher fatigue severity.

Don't Try to Muscle Through

Whatever level of fibromyalgia pain you experience, it isn't necessarily something you have to just live with.

"There are a lot of things that can be done for pain, depending on what's causing it," says Arkfeld, pointing to medications , high-quality sleep, and correcting hormone or nutrient deficiencies as areas that can be beneficial.

If you try to push through your fibromyalgia pain rather than addressing and treating it, you may end up making the pain and fatigue worse, Arkfeld says. Instead, try to develop a self-care program with the goal of reducing pain and fatigue, and don't push yourself too hard when your body is telling you not to.

Do Use the Energy You Have

For someone with fibromyalgia, knowing when you're likely to have the most energy and the least pain - such as earlier in the day for some people - can help you plan out your activities and get things done. That can also mean doing structured exercise on days, or at times of the day, when your energy level is relatively high.

"Fatigue requires not overdoing it, but not underdoing it," says Arkfeld, since the more active you are when you have the ability to be, the more energy you're likely to have in general. Plus you'll feel better about getting things done, which can boost your mental health - something that's especially important in the context of fibromyalgia.

Don't Ignore Your Mental Health

Addressing mental health challenges like depression and anxiety is considered a key part of fibromyalgia treatment, not separate from it, says Arkfeld. In part, that's because certain antidepressants are also approved as fibromyalgia treatments - namely duloxetine (Cymbalta) , milnacipran (Savella) , and pregabalin (Lyrica) - so they may have effects on both your mental health and fibromyalgia pain.

Arkfeld also notes that many people with fibromyalgia are especially sensitive to side effects of antidepressants, even at what are considered to be low starting doses of some drugs - so it's important to see a mental health provider who is familiar with fibromyalgia.

Seeing a therapist or psychologist can also be highly beneficial for many people with fibromyalgia. One common therapy technique, called cognitive behavioral therapy , is considered a mainstay of fibromyalgia treatment to help people deal with negative thoughts and identify activities that can make their symptoms worse.

In one review of 17 previously published studies involving participants with fibromyalgia, researchers found that cognitive behavioral therapy - as well as a related technique called acceptance and commitment therapy - was linked to a significant reduction in symptoms of both depression and anxiety.

Do Get Enough Sleep

Sleep can be an especially difficult area for people with fibromyalgia, since poor sleep can be both a cause and an effect of fibromyalgia pain.

"In deep sleep, you release a lot of neurochemicals," says Arkfeld, which are highly beneficial in reducing pain and fatigue. And for many people with fibromyalgia, "Interrupted sleep seems to aggravate pain quite a bit."

To increase the odds of getting a good night's sleep, Arkfeld suggests reducing stimulating activities - including use of electronic devices - before your bedtime, and sticking to a regular sleep schedule .

Another option for better sleep may be a treatment called low-dose naltrexone, which is not approved for fibromyalgia but is sometimes prescribed off-label. "That does make people sleep deeper, which seems to help with the pain of fibromyalgia quite a bit," says Arkfeld. A recent research review found that low-dose naltrexone was effective in reducing fibromyalgia symptoms and appeared to be safe, but that larger studies were needed to confirm these findings.

Do Exercise With Caution

Physical activity is important for people with fibromyalgia, but it's just as important to be measured and realistic about your capabilities, says Arkfeld. "You have to slowly increase your activities, because if you do too much, you're just going to flare and end up taking steps backward."

One way to ensure that you make steady progress without pushing yourself too hard is to participate in a graded exercise program, in which an exercise specialist helps you build strength and endurance over a period of time. A review of studies on aerobic exercise programs designed for people with fibromyalgia found limited evidence that these programs may help improve pain intensity, fatigue, stiffness, and overall health-related quality of life.

Another research review found that exercise programs for people with fibromyalgia were moderately effective at improving fatigue and could have a small effect on sleep quality, while meditative exercise programs (incorporating techniques like mindfulness or structured breathing) were most effective at improving sleep quality.

Do Seek Help and Support

When you have fibromyalgia, you should expect a lot out of your relationship with your doctor, says Arkfeld. "Even though you might look really healthy, when you go under the surface, there are a lot of issues," he says, when it comes to levels of various hormones and antibodies (immune system proteins).

For example, Arkfeld says, many of his patients with fibromyalgia also have low thyroid hormone levels - but it's not always clear early on when such tests are warranted. It's important that your doctor take the time to obtain a complete medical history from you and perform a thorough exam to arrive at a diagnosis and determine what additional testing might be helpful.

But according to Arkfeld, "You have to really engage the patients, get to know them, build trust. And that can take months."

It's also ideal when you can lean on friends or family members for support, and let them know what you're experiencing with fibromyalgia pain and fatigue - symptoms they probably can't see and may not know about in the moment. "At home, if the spouse or family are supportive, it can be very helpful," says Arkfeld.

The Takeaway

Fibromyalgia pain and fatigue can range from a nuisance to crushing symptoms that make everyday activities difficult. Fibromyalgia self-care can help ease your symptom burden, which means listening to your body, respecting your limits, and getting the right amount of sleep and physical activity. Talk to your doctor about tests and potential treatments that may help you address pain and fatigue.

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