What Fibromyalgia Feels Like

Diabetics may talk about blood glucose levels. Heart patients may discuss stress tests. People with osteoporosis speak of bone-density measures. But when people talk about fibromyalgia, it's often a discussion of the symptoms they're experiencing, not what's turning up in their blood work or on an X-ray. That's because medical science has not yet figured out how to measure fibro in your blood or see it on an X-ray. Doctors begin to suspect fibromyalgia when patients start describing their symptoms.

But even the signs and symptoms of fibromyalgia can vary widely from one patient to the next. That's why obtaining a diagnosis is often a struggle. Some people spend as many as five years trying to find out what is wrong. In fact, even if you're reading this book, you may still be uncertain whether what you have is fibromyalgia. Fortunately, as our understanding of the disease has grown, some symptoms have emerged as common ones. Consider the case of Dee, who wasn't properly diagnosed for 20 years:

In her early twenties, Dee was wracked with pain and told she had rheumatoid arthritis. Dee lived in fear that her joints would become deformed one day. She tried numerous RA medications, but none worked. Then, eight years ago, Dee had a car accident and learned that what she had was actually fibromyalgia. She looks back at the car accident as the event that gave her back her life and restored her hope.

You'll Feel Pain

Deep muscular aches. Sharp, shooting pains. Throbbing sensations. Those are just a few ways that fibromyalgia patients describe the chronic widespread pain that is the most common and persistent feature of fibromyalgia. Virtually all fibro patients experience some type of pain every single day. The severity of the pain can vary, depending on the weather, your stress and activity levels, and how well you've been sleeping.

Essential

For some people with fibromyalgia, everything is irritating. Ordinary lights hurt their eyes. Silk sheets irritate their skin. The hum of a car engine makes them edgy. Chalk it up to more symptoms of fibromyalgia. Some people who have FMS become hypersensitive to the sounds, smells, and sensations around them. This condition is called allodynia, which occurs when normally bearable sensations become painful ones. Interestingly, in FMS, allodynia can affect all five senses.

The pain-sensing part of a fibro patient's nervous system has been made hypersensitive. Doctors measure this by pressing on what are known as “tender points,” spots scattered around your body that they use to monitor your pain sensitivity. When another person presses on these tender points — using enough force to whiten the thumbnail — you feel pain. In fibromyalgia, there are 18 symmetrically positioned tender points that have been identified to help diagnose the disease. If more than 11 of them are tender, you qualify for a diagnosis of fibromyalgia.

You'll Feel Tired

We all have days when our energy levels are low. But in people who have fibromyalgia, the fatigue is extreme and can be physical, mental, or, most commonly, both. The fatigue in fibro is mind numbing, debilitating, and exhausting. It can make it hard for you to prepare a meal, do simple chores, or perform your job. This overwhelming weariness can make you listless and unable to exercise. In some cases, you may simply feel chronic exhaustion. Approximately 90 percent of people who have fibromyalgia experience fatigue.

You Might Feel Confused

Everyone has momentary lapses in memory, problems concentrating, and difficulties recalling the right word. But in people who have fibromyalgia, these cognitive challenges become more frequent, and you may develop what is commonly called fibro fog.

Fibro fog can result in numerous challenges. You may become absentminded, forgetful, and easily confused. Everyday objects get misplaced and turn up in strange places. Following simple directions becomes a major effort. Concentrating on a task feels like a Herculean effort.

In fact, this may be a form of fatigue as well. Just as your muscles run out of energy too quickly in FMS, so can your brain cells. When they run out of energy, they don't work well anymore. It may also be a side effect of some medications used to treat fibro.

Why don't people believe fibro exists?

People who have it look healthy. Routine blood tests turn up nothing conclusive. X-rays and MRIs rarely reveal abnormalities in the joints or muscles. But here's the good news: Studies show that the levels of certain important chemicals are abnormal in people with fibromyalgia. In addition, scans that show brain activity levels have demonstrated that the pain centers in FMS patients are strongly hyperactive.

You'll Feel Sad, Maybe Anxious

People who have fibromyalgia often report feeling sad, and some may experience clinical depression. Approximately 30 percent of people with fibromyalgia are clinically depressed at any point in time. The constant pain, lack of sleep, and the struggle to pin down a diagnosis or get relief is enough to sadden even the most buoyant spirits. It is often the lack of hope and feelings of helplessness that trigger the descent into depression.

Depression can have serious ramifications, especially for people with chronic conditions that require vigilance and constant self-care. A depressed person is less likely to exercise and take her medications, and may even begin abusing drugs or alcohol. The lack of self-care can lead to a vicious cycle of despair that ultimately worsens your symptoms.

Other Problems

People who have fibromyalgia often have much more than the symptoms we've described above. Along with the pain and fatigue, you may also experience:

  • Abdominal pain, bloating, diarrhea, or constipation, caused by irritable bowel syndrome, a dysfunction of the large intestine

  • Painful menstrual periods

  • Restless legs syndrome, an irresistible urge to move your legs

  • Headaches or migraines

  • Temporomandibular joint disorder

  • Numbness and tingling in the extremities

  • Morning stiffness

You may also experience irritable bladder; dry eyes and mouth; chronic yeast infections; Raynaud's phenomenon, an exaggerated response to the cold in the extremities; and vulvodynia, pain in the external female genitalia.

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