9 Things No One Ever Tells You About Fibromyalgia

Pain – whether it’s an achy joint or a sensitive limb – is agony enough by itself. But when you can’t figure out what’s causing the pain? Then it can feel more like torture.

Unfortunately, that kind of torture is the daily struggle for the 5 million Americans who suffer from fibromyalgia – a condition characterized by pain or tenderness that comes and goes and moves throughout the body, according to the American College of Rheumatology.

“People complain of total-body pain not diagnosable by other causes,” says Jon Kaiser, MD, who has treated and researched pain conditions like fibromyalgia for 25 years. He adds: “There’s not a whole lot of agreement on the underlying mechanism that causes the pain associated with fibromyalgia.”

That’s frustrating for fibromyalgia sufferers. But there’s a lot researchers like Kaiser have learned in recent years that can shed light on this pain-inducing disease.

Fibromyalgia

Here’s what you need to know – but have probably never heard – about fibromyalgia.

It’s not all about pain.

Along with the aching and tenderness, many fibromyalgia sufferers also experience stiffness (especially in the morning), tingling or numbness in their hands or feet, sleeping issues, headaches, problems sleeping, and severe fatigue, according to the Centers for Disease Control and Prevention.

It’s diagnosable.

Just because the source of the pain remains in question doesn’t mean doctors can’t diagnose fibromyalgia. “The American College of Rheumatology came out with 18 trigger points, or sites,” Kaiser explains. “If you feel pain in 11 of the 18 sites” – and assuming tests have ruled out other conditions – “I can diagnose fibromyalgia,” Kaiser says.

It seems to stem from your nervous system

“The most commonly held belief is that there is a disorder in the nervous system that changes the threshold at which pain is perceived,” Kaiser says. Research backs him up: A 2015 study from Germany found the nervous systems of fibromyalgia sufferers respond to pain differently than those of non-sufferers.

Stress may bring it on.

“Many of my patients talk about having a lot of physical and psychological stress leading up to the appearance of the condition,” Kaiser says. This stress may somehow cause a breakdown or change in the way the nervous system operates, which then leads to pain, he adds.

So might a shortage of vitamin D.

People dealing with chronic and widespread pain are more likely to be low on vitamin D than those who are pain free, found a 2015 study in the journal Pain Physician. Since it’s difficult to overdo it with vitamin D, consider adding a supplement to your diet.

It’s closely related to another condition.

Kaiser says fibromyalgia – in his experience – is closely related to chronic fatigue syndrome (CFS). “They share many of the same symptoms, particularly pain and fatigue,” he says. “But while the fatigue is more prominent among chronic fatigue patients, pain is more prominent among fibromyalgia patients.” One notable difference: Kaiser says fibromyalgia seems to come on gradually and build over time, while CFS can come on very quickly and reach full strength in a matter of days.

It’s more common in women than men.

Women are three times more likely than men to suffer from fibromyalgia, Kaiser says – though he can’t say why this is the case. Also, while it could appear at any age, fibromyalgia tends to affect women in their 40s and older, he says. “There also seems to be a genetic component that causes it to run in families.”

Drugs can help.

Kaiser says there are 3 FDA-approved drugs that doctors use to treat the pain associated with fibromyalgia: duloxetine (Cymbalta), milnacipran (Savella), and pregabalin (Lyrica). “These drugs can block the pain signals, but they don’t do anything to address the underlying issues,” he says.

That’s why you need more than a pill.

Sufferers often find relief through physical activity, range of movement exercises, stress reduction techniques like yoga, and a healthy diet, Kaiser says. “It’s not just about treating the pain with pills,” he adds. “Lifestyle changes can help address the underlying causes of the pain.”

It can be cured.

A combination of drugs and lifestyle changes can totally and permanently banish fibromyalgia. “Some people will improve a certain percentage and then just have to manage the symptoms that remain,” Kaiser says. “But others are totally rid of the disease, and that’s always the goal.”

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