Does It Hurt to Have Fibromyalgia?
Key takeaways:
Fibromyalgia is a chronic condition that causes widespread pain in the muscles and bones.
Pain from fibromyalgia is often accompanied by fatigue, sleep issues, and mood disturbances.
Here’s how three people with fibromyalgia describe the pain and manage it in their daily life.
About 4 million Americans have fibromyalgia. That’s 2% of the adult population who can tell you firsthand that fibromyalgia hurts.
In fact, the most common symptom of fibromyalgia is widespread pain in the muscles and bones, which leads to discomfort and tenderness throughout the body.
Most people with fibromyalgia are diagnosed during middle age. Women are twice as likely to be diagnosed as men, and it’s more common among people with autoimmune conditions such as rheumatoid arthritis and lupus.
How much does fibromyalgia hurt? Here’s how three people with the condition describe the pain — and how they manage it.
Fibromyalgia can make ‘every part of your body’ hurt
When she was in her late 30s, Amber Nichols woke up one day with pain in every joint of her body.
“It was traumatic. I had never experienced anything like it,” Amber, who’s now 53, says, adding that she told her husband “every part of my body hurts.”
She spent a year going to doctor visits to rule out everything from lupus to rheumatoid arthritis to multiple sclerosis. Then, in 2009, a rheumatologist diagnosed her with fibromyalgia.
Amber describes fibromyalgia pain as arthritic with muscle pain on top.
“When a person says, ‘Every part of my body hurts,’ I am literally an example of that,” Amber says. “Everything from the ears down hurts.”
She takes the prescription medication Cymbalta (duloxetine) to manage her symptoms and a muscle relaxer at bedtime to help her sleep. “It helps me get a deeper rest, which helps me repair and heal overnight,” she says.
By lowering her Cymbalta dosage over the years, she has learned to take the medication daily.
“I have tried to go off it multiple times through the years, but the pain is too intense. I have accepted that I’m going to be on Cymbalta the rest of my life,” she says.
Amber supplements Cymbalta with over-the-counter medications like Aleve or Advil for added relief. And she and her husband had a pool installed last summer in their Murfreesboro, Tennessee, backyard to help her manage her fibromyalgia pain.
“Swimming is the thing that helps me the most,” she says. “I feel best in the warmer months.”
When Amber is having a flare-up, which can last a few days, she rests more. Sometimes, she says, she just wants to stay in bed “because it is so exhausting and painful.” Despite that, she works full time and recently switched to a more flexible industry.
“People think it is in your head,” Amber says, explaining that there are a lot of misconceptions about people with fibromyalgia, including that they’re lethargic.
“It is impossible to have fibromyalgia and juggle it all — take care of kids, work full-time, come home and cook dinner and clean the house,” she adds.
How do you deal with severe fibromyalgia pain? Effective remedies include getting enough exercise and sleep, doing cognitive behavioral therapy, and reducing stress.
What are the best exercises for someone with fibromyalgia? Aerobics and strength training may be most effective for fibromyalgia.
Can your diet help you manage chronic pain? One woman who has fibromyalgia explains how she eats with her health in mind.
Chronic pain and depression can be a ‘vicious cycle’
Sam Zavitz of New Bern, North Carolina, was diagnosed with fibromyalgia at age 25. That was a year after initially being diagnosed with Lyme disease, an illness spread by ticks that can have similar symptoms. As far as she knows, no one else in her family has fibromyalgia, though her mother has rheumatoid arthritis and lupus.
Sam, who’s now 44, primarily feels the effects of fibromyalgia in her hip and shoulder with what she describes as aching and stabbing pain. She sometimes has a hard time raising her left arm and shoulder, as she has tingling in that arm. She gets migraines, which she treats with Imitrex (sumatriptan), occasionally supplementing with naproxen to relieve pain and inflammation.
Sam says stress and fatigue can trigger her flare-ups. When that happens and the flare-up is particularly bad, she goes to her rheumatologist for cortisone shots in her hips and neck.
She also manages the pain by getting a lot of rest, going to bed early, and occasionally getting a massage.
Sam is currently not working, but she says fibromyalgia hasn't hindered her ability to work in the past. She recently returned from a family vacation to Disney World with her husband and two children. She managed her symptoms by resting as much as possible during the downtime.
Sam points out that chronic pain and the guilt associated with it can cause depression.
“There’s this vicious cycle,” she says. “You feel bad that you don’t want to get out of bed or off the couch, so you become more depressed. But to get out of it, you have to get off the bed or the couch.”
Your pain can be invisible to the outside world
Elisabeth Manning of Brenham, Texas, was an executive in a deadline-driven profession before fibromyalgia pain restricted her ability to work.
In 2001, after getting a preliminary diagnosis of chronic fatigue syndrome, Elizabeth was diagnosed with fibromyalgia while having symptoms that initially presented as a bad case of the flu. In the two decades since, she has seen a dozen physicians, ranging in specialties from neurology to rheumatology to immunology.
Elisabeth, who’s 57, finds pain relief and increased energy levels from taking paroxetine (Paxil). She has also taken the muscle relaxer Flexeril (cyclobenzaprine) to help her pain symptoms.
“Like many with fibromyalgia, chronic fatigue, and similar disorders, I experience depression and anxiety that comes when you have an ongoing physical frustration that is medically unresolvable [and] impedes your daily functioning,” Elisabeth says.
The first 10 years after she was diagnosed were particularly frustrating. She felt like her doctors acted as if her condition was something that she’d created, she says. And on top of that, she could no longer rely on her body, after years of staying fit and eating healthy.
My body being the weak link — when I had really striven to care for my physical condition and could always call up energy as needed — was tremendously depressing,” she says.
She also felt caught in a cycle of pushing herself at work and then crashing. “You have to show up regardless of how you feel physically,” she says. “You do everything to meet that deadline, and then you are down for a week.”
Elisabeth’s fibromyalgia pain primarily shows up as major joint stiffness and bone pain. She also deals with skin numbness or tingling known as paraesthesia, “It’s a terrible symptom. It migrates and is unpredictable,” she says. “One day, it’s on the soles of my feet. The next day, it’s in my scalp. The next day, it’s on my arm.”
Living with fibromyalgia can be difficult as it is categorized as an invisible disability.
“I wish I could have a mood ring that was indicative of my pain, so when people look at me and say, ‘Well, you look great,’ I can just show them the ring,” Elisabeth says.
Recently, she found life-changing relief through radiofrequency ablation therapy, which she initially sought to treat COVID-related loss of taste and smell.
“I can use my hands again. And while I can tell that the pain is still there, it is not with the intensity that I felt prior to this treatment,” she says.
Once an active runner and tennis player, Elisabeth now prefers swimming for exercise and advises other people with the condition to give it a try. “When they tell you to exercise with fibromyalgia, just get in the water,” she says.
Elisabeth also says crying can be therapeutic. “Weeping is one of the most healing natural consequences of any kind of pain, whether physical or psychological,” she says. “I really believe in the power of a good cry.”
A support system is also important, she adds. “It is essential for anyone with any kind of debilitating condition to have a meaningful support system of people who do not question you, who take your pain at face value and are willing to wrap you in love and tell you everything is going to be OK,” she says.
What does the doctor say?
Patricia Pinto-Garcia, MD, MPH
Senior Medical Editor
In addition to a lifetime of intermittent pain, people with fibromyalgia often face endless frustration because their condition is largely misunderstood.
Fibromyalgia was first described in medical literature at the turn of the 20th century. Over the last 120 years, it has gone by a series of different names. These various name changes reflect the fact that science and medicine are still racing to understand the condition.
Unlike many other medical conditions that cause point, muscle, and joint pain, fibromyalgia doesn’t show up as predictable changes on imaging studies or in blood work. But that doesn’t mean that the symptoms don’t exist. It just means that the tools we have right now can’t measure the changes caused by fibromyalgia. Of course, that’s a hard concept for many people to understand, especially when they’re not the ones living with the very real manifestations of those unmeasurable changes.
Eventually, science will catch up and there will be a way to measure the biological changes that cause fibromyalgia symptoms. And when that happens, it will be possible for researchers to develop treatments that target the root causes of fibromyalgia.
Right now, people living with fibromyalgia depend on treatment options that lessen symptoms. But since these medications aren’t developed specifically for fibromyalgia, they don’t work well for everyone. That means people often have to try several different options in order to find a treatment strategy that works for them.
If you’re living with fibromyalgia, make sure to try a variety of treatment options. Your options may include medication, exercise, and complementary therapies. It may take time to find a combination that works for you. You may need to change therapies over time, too.
It can also help to look for a community of people who have fibromyalgia. Working with a supportive community can help you find new treatment options. People may also have suggestions about how to find the right healthcare team and how to approach relationships and work while living with fibromyalgia.
Why trust our experts?
