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What People With Fibromyalgia Wish They Could Tell You

Fibromyalgia affects about 5 to 6 million people in the United States, mostly women. Yet, so little is known about the condition and people with fibromyalgia often feel misunderstood. Here, three women share their thoughts about living with fibromyalgia.

1. The pain and fatigue are real.

People understand pain and fatigue if they can see the cause, like a broken bone or an incision from an operation. Fibromyalgia is an invisible illness though, making it harder to understand. But, “That pain is real. That pain is debilitating, affecting every part of your life,” says Sharon Gates, a retired nurse from Montreal, Canada.

2. Fibromyalgia has been around for centuries.

Fibromyalgia isn’t a new illness. It’s existed for centuries under different names, such as rheumatism. Historical records about Florence Nightingale, the founder of modern nursing, show she probably had fibromyalgia.

“It’s a real medical condition, backed up by decades of work and many, many studies,” says Susanne Gilliam, a recent law school graduate in Massachusetts. But because there are so many unknowns, there are people who don’t believe it exists.

3. It can be a relief to finally be diagnosed.

Illnesses like cancer or diabetes have tests to diagnose them. There are no tests for fibromyalgia and it can take an average of about five years to get a diagnosis. For some people, it takes much longer. Gilliam thinks she’s had it for about 18 years. In the meantime, it’s easy for people to begin wondering what is going on–because so many tests are coming back as normal.

Having a diagnosis is important. “When you get a diagnosis of something, it’s not always a positive thing, but at least you know you’re not crazy,” Gates says. “You make changes and you try to manage the best you can.”

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4. Fibromyalgia doesn’t go away.

Fibromyalgia is a chronic illness and, while people may have periods with few symptoms, it doesn’t go away. This can make it hard to talk about the illness, because no one wants to seem like they’re always complaining. “People lose patience with chronic illnesses,” points out Randi Kreger, an author from Wisconsin. “They’re more attuned to short-term things that get better. The don’t really realize that not everything is curable, and that some things just don’t get better.”

5. Fibromyalgia can make you extra sensitive to the sensations around you.

When people have fibromyalgia, it’s as if their sensitivity dials are turned up too high. Lights can be too bright, smells can be too strong, and noises can be too loud. These sensitivities can make it hard for them to get out and be an active part of the community.

“I went to a book club that met in a coffee shop,” Randi says. “They were roasting and grinding coffee. The noise was really too much and I asked if we could go to a place where it was just not that noisy.” But the others in the group refused to move. They didn’t find the place particularly noisy and couldn’t relate to Randi’s discomfort.

6. Fibromyalgia makes you forgetful.

Most people have memory lapses from time to time. They forget where they put their keys or to show up for a doctor’s appointment. But for those with fibromyalgia, it’s worse. “Fibro fog” makes thinking fuzzy and remembering difficult. It can also make it hard to follow conversations.

7. There can be good days.

The confusing thing about fibromyalgia is that for many people, the pain, fatigue, fibro fog, and other symptoms aren’t always there. One day, they may be able to go on a hike with their children and then out to a movie with a friend, but the next day, they may not be able to get out of bed. Nothing is constant.

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8. It can be hard to plan ahead.

Because people with fibromyalgia have both good and bad days, it’s next to impossible to plan ahead. It’s no fun to make plans only to have to cancel them. It’s disappointing, but they can’t know what they’re going to be feeling like a month from now, a week from now, or even a day from now. “I just do the best I can,” Gates says.

9. Medications help some people with fibromyalgia.

There are medicines that are effective for some people’s symptoms. Gilliam experienced a complete turnaround when she and her doctors found the right drug combination for her. “Every day it was like crossing the finish line at the end of a marathon,” she says. There was something new each day that she could do, like carrying her laundry up the stairs, going to the pharmacy alone, and even going back to school to study law. “But this isn’t the standard outcome,” Susanne points out. “It isn’t even a common outcome, but it does happen.”

10. But the medicines don’t help everyone.

Unfortunately, the medicines do not help everyone with fibromyalgia and for others, the medicines cause serious side effects, such as depression, weight gain, or dizziness.

Patient listening and helping hands mean a lot to people with fibromyalgia. It can be discouraging to live with a chronic illness, but the understanding of friends and family go a long way, and can make all the difference, perhaps turning a bad day into a good one.

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