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haitrieutwo

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For Amy Mullholand, simple chores like washing the dishes or making breakfast can be incredibly challenging. “On a good day, I can get through the cups and the silverware, then I must sit for at least 15 to 20 minutes. Then I tackle the bowls. Then I sit and rest,” said Mullholand. “On a bad day, I have literally cried from the pain of standing long enough to fry an egg.”

Before she was diagnosed with fibromyalgia two years ago, Mullholand — like a lot of people — thought the disorder’s symptoms were mild aches and pains. “How could I be in so much pain and have it just be fibromyalgia?” The main symptom is chronic, widespread pain, but it can also cause headaches, sleeping problems, fatigue, and irritable bowel syndrome.

Mullholand, 42, has severe pain in her shoulders, neck, back, and hips. She constantly feels like she doesn’t have any energy. “I wish people knew more about the day-to-day life that people with fibromyalgia have to live, and understood the real pain and sickness that we feel,” she said.

As many as 12 million Americans know what it means to live with fibromyalgia, according to the American Chronic Pain Association (ACPA). Doctors don’t know what causes it, though stress, infection, or physical trauma can sometimes trigger symptoms. The fact that 9 out of 10 people with fibromyalgia are women suggests that female hormones may be a contributing factor.

Research points to changes in the pain pathways throughout the body of patients with fibromyalgia. An August study in the journal Pain found that half of a group of 27 fibromyalgia patients had damage to nerve fibers in their skin. “This provides some of the first objective evidence of a mechanism behind some cases of fibromyalgia, and identifying an underlying cause is the first step towards finding better treatments,” said study author Anne Louise Oaklander, MD, PhD, director of the Nerve Injury Unit at Massachusetts General Hospital.

Diagnosing it can be tricky because symptoms often come and go and resemble other conditions such as rheumatoid arthritis and osteoarthritis. An ACPA survey found that 77 percent of cases take three years or more to be properly diagnosed. Mullholand’s primary care doctor at first suspected she had the autoimmune condition lupus.

“All you’ve got to make the diagnosis is usually a strong constellation of symptoms without anything else backing it up,” said Richard Danehower, MD, a rheumatologist at Greenwich Hospital in Connecticut. “It drives some patients and doctors crazy, but that’s just the way it is.”

To diagnose fibromyalgia, doctors typically rely on certain guidelines from the American College of Rheumatology:

The total number of tender points on the body that hurt when pressed. There are 18 (or 9 pairs of) points, such as the elbows and knees, that doctors examine. At least 11 of the 18 points must be painful to diagnose fibromyalgia.

The level of fatigue a patient is feeling, if they’re waking up feeling tired, or having cognitive problems.

If the symptoms persist at least three months.

Whether another health condition may be causing the symptoms.

Being able to spot differences in symptoms and ruling out other possible diseases is key to diagnosis, according to Dr. Danehower.

For example, someone with rheumatoid arthritis will have trouble moving their joints and have swelling in the hand and wrist, whereas fibromyalgia patients have a good range of motion. Osteoarthritis patients feel more pain exercising, while fibromyalgia patients feel worse when they’re at rest. People with lupus also typically have shortness of breath, chest pain, and a butterfly-shaped rash over the bridge of their nose.

“There’s a misconception among some patients that fibromyalgia is a phony disease. It goes back to the idea that so much of the diagnosis is subjective,” said Danehower. “Some patients will get to me and say their original doctor doesn’t think it exists, and they’re glad to get a diagnosis and understand it.”

Once diagnosed, fibromyalgia can’t be cured. But there are medications that can help lessen its symptoms. Your doctor may prescribe antidepressants or anti-seizure drugs, and recommend over-the-counter medicines like ibuprofen or acetaminophen to manage the pain.

According to the American College of Rheumatology, relaxation techniques such as yoga, cognitive behavioral therapy, and alternative treatments like acupuncture may help. Mullholand found that hot water eases her pain, so she takes frequent baths. There isn’t much research to support many of these methods’ effectiveness, and patients should discuss any treatment options with their doctor.

A study in the journal Arthritis Care & Research found that doing light to moderate exercise over a long period of time can lessen fatigue and sleeping problems without increasing pain.

“For many people with fibromyalgia, they will exercise for a week or two and then start hurting and think that exercise is aggravating their pain, so they stop exercising,” said senior author Dennis Ang, MD, associate professor of internal medicine at Wake Forest Baptist. “We hope that our findings will help reduce patients’ fear and reassure them that sustained exercise will improve their overall health and reduce their symptoms without worsening their pain.”

Even with treatment, fibromyalgia is a reality that people like Mullholand have to face every day.

“The most misunderstood thing about fibromyalgia is that it’s real, it isn’t in our heads,” said Mullholand. “We may not look sick on the outside, but we are sick on the inside.”
 
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