Fibromyalgia FAQs

Fibromyalgia FAQs
  1. What is fibromyalgia?
  2. What causes fibromyalgia?
  3. How is fibromyalgia diagnosed?
  4. How is fibromyalgia treated?
  5. What is the prognosis?
  6. What can I do to help myself?
  7. Is there a cure?
  8. Why do some doctors think that the pain is all in my head?
  9. Why does my doctor think I just need to exercise?
  10. What is fibromyalgia pain like?
  11. What is the fatigue like?
  12. I have trouble sleeping. Is this part of the fibromyalgia?
  13. I have a lot of GI problems. Are these symptoms part of fibromyalgia?
  14. How common are headaches in fibromyalgia?
  15. Is TMJ disorder associated with fibromyalgia?
  16. What factors aggravate the symptoms of fibromyalgia?
  17. Is fibromyalgia genetic (i.e., does it run in families)?
  18. What medical specialist should I see for treating my fibromyalgia?
  19. Does fibromyalgia get worse over time?
  20. Can I still work with fibromyalgia?
  21. Does weather affect symptoms and, if so, what climate is best for fibromyalgia?
  22. Is there a special diet I should be eating?

1. What is fibromyalgia?

Fibromyalgia is a widespread musculoskeletal pain and fatigue disorder that is considered a syndrome because there are so many symptoms and conditions associated with it. Fibromyalgia means pain in the muscles, ligaments, and tendons—the soft fibrous tissues in the body. Most patients say that they ache all over, like a chronic case of a bad flu. Their muscles may feel like they were pulled or overworked. Sometimes the muscles twitch and other times they burn. More women than men are afflicted with fibromyalgia (75% versus 25%) and it shows up in people of all ages.

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2. What causes fibromyalgia?

Although the cause is not known, there appear to be many triggering events that often precipitate its onset. Examples include: infections (bacterial or viral), physical trauma (such as an automobile accident), or the development of another disorder, such as rheumatoid arthritis, lupus, or hypothyroidism. These triggering events probably do not cause fibromyalgia, but rather, they may awaken an underlying physiological abnormality that is already present.

Abnormalities that may be related to your symptoms include the following:

  • alterations in pain-related chemical transmitters (particularly substance P, nerve growth factor, serotonin, dopamine, norepinephrine, and glutamate)
  • immune system dysfunction (e.g., abnormally elevated levels of cytokines that form the communications link between your immunologic and neurologic systems)
  • sleep disturbances
  • myofascial trigger points, which are the source of tight and knotted muscles, may interact with your nervous system to amplify your many symptoms
  • hormonal irregularities
  • differences in the way your brain functions, which may increase pain, brain fog, mental fatigue, and sleep disruption
  • the body’s response to exercise and stress
  • dysregulation of the autonomic nervous system (the one that operates in your peripheral tissues to control your organs)
  • elevated substance P and nerve growth factor are increased threefold and fourfold (respectively) in the spinal fluid of people with fibromyalgia, but researchers are still working to figure out how these elevations are related to the symptoms
  • increases in certain receptors used by your nervous system for communicating muscle pain and fatigue (and perhaps sleepiness in the brain)

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3. How is fibromyalgia diagnosed?

For the most part, routine laboratory testing reveals nothing. However, upon physical examination, patients will be sensitive to pressure in certain areas of the body, called tender points. To meet the diagnostic criteria (set forth for research purposes), patients must have widespread pain in all four quadrants of their body for a minimum duration of three months and at least 11 of the 18 specified tender points. The 18 sites used for diagnosis cluster around the neck, shoulder, chest, hip, knee, and elbow regions (more than 90% of these areas are myofascial trigger points). However, if a person has widespread pain, at least six or more tender points and many of the commonly associated symptoms of fibromyalgia (such as disturbed sleep, irritable bowel syndrome, frequent headaches, fatigue, and memory problems), they should still be diagnosed and treated for fibromyalgia. Roughly 75% of chronic fatigue syndrome (CFS)-diagnosed patients will meet the fibromyalgia criteria. If you have been diagnosed with fibromyalgia or chronic fatigue syndrome but you are unsure about the diagnosis, or you are concerned you have something else that mimics these conditions, click here for more details.

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4. How is fibromyalgia treated?

Traditional treatments are geared toward reducing pain and improving the quality of sleep, meaning that a sleep study may aid with individualizing your therapy. Deep level (stage 4) sleep is crucial for many body functions (such as tissue repair, antibody production, and the regulation of various neurotransmitters, hormones, and immune system chemicals). Therefore, the sleep disorders that frequently occur in fibromyalgia patients should probably be treated first because they may aggravate the symptoms of this condition. Ambien, Lunesta, clonazepam, and trazodone are just a few of the medications that may be used to aid sleep. For addressing the pain and the symptoms in general, medications that boost serotonin and norepinephrine (neurotransmitters that modulate sleep, pain, and immune system function) are commonly prescribed in low doses, such as amitriptyline, cyclobenzaprine and Cymbalta. Ultram may help with the pain, although stronger opioids may be needed. Muscle relaxants, anti-epileptics (such as Neurontin and Lyrica) and other drug categories may be prescribed as well.

In addition to medications, most patients will need to use other treatment methods, such as trigger point injections with lidocaine, physical therapy, occupational therapy, acupuncture, acupressure, relaxation/biofeedback techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program.

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5. What is the prognosis?

Long term follow-up studies have shown that fibromyalgia is chronic, but the symptoms may wax and wane. The impact that fibromyalgia can have on daily living activities, including the ability to work a full-time job, differs among patients. Overall, studies have shown that fibromyalgia can be as disabling and life-impacting as rheumatoid arthritis.

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6. What can I do to help myself?

Lifestyle modifications may help you conserve energy and minimize pain. Learn what factors aggravate your symptoms and avoid them when possible. Many patients find warm water (hot tub or shower) to be soothing. Hot wraps for particularly painful areas are also beneficial. Maintaining a rigid sleep schedule (e.g., ensuring that you receive at least eight hours of sleep per night and that you have a routine for easing you into sleep) is one method endorsed by patients to help minimize daytime fatigue and reduce nighttime sleep difficulties. Gentle movement and stretching exercises will help you maintain your function, which is essential when the body is tired and the muscles hurt.

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7. Is there a cure?

No, but there are researched treatments that have been shown to be helpful for reducing the symptoms. Patients need to beware of the many bogus cures that are being promoted on the Internet and in the media. Many businesses count on people who are desperate to get rid of chronic, unrelenting pain (such as that produced by fibromyalgia). If a remedy sounds too good to be true, it probably is. Click here to read our Consumer Alerts section for more details about spotting bogus cures.

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8. Why do some doctors think that the pain is all in my head?

Doctors cannot “see” and may not understand the sources of your pain or fatigue. However, what they do observe is your anxiety and frustration with having to deal with these symptoms around-the-clock, which may wrongfully lead them to conclude that your symptoms are of a psychological nature. Also, the old school of thought regarding pain is that it is produced by tissue injury, and there is no obvious source of tissue injury in patients with fibromyalgia. Regardless, if your doctor does not believe that your symptoms are real, you owe it to yourself to find another doctor who believes in you and will work with you to help reduce your symptoms.

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9. Why does my doctor think I just need to exercise?

Although some degree of regular exercise is essential for maintaining function, and if done in warm water, it can improve circulation. Yet, exercise alone will not be enough to treat your fibromyalgia. Many studies on the use of exercise to treat fibromyalgia have been published over the years, and while the documented benefits are minimal, these studies are heavily promoted at medical conferences and widely publicized in the medical journals. Exercise is easy to prescribe and doesn’t cost anything, so it tends to be one of the first therapies that a doctor recommends for fibromyalgia. Yet, you have to be careful because over-working any one muscle will cause others to hurt more. Read more.

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10. What is fibromyalgia pain like?

The pain of fibromyalgia has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning, and you may hurt more in muscle groups that are used repetitively. Read more about muscle stiffness and repetitive activity in fibro.

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11. What is the fatigue like?

This symptom can range from mild to incapacitating. The fatigue has been described as “brain fatigue”—patients feel totally drained of energy. Many patients say that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating (i.e., brain fog). Fibromyalgia fatigue is definitely not just being tired! Learn more.

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12. I have trouble sleeping. Is this part of the fibromyalgia?

Most fibromyalgia patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine that recorded brain waves of patients during sleep. Researchers found that most fibromyalgia patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it.

If you wake up feeling as though you’ve just been run over by a Mack truck—what doctors refer to as “unrefreshing sleep”—it is reasonable for your physician to assume that you have a sleep disorder. However, to pinpoint the types of sleep disturbances present, an overnight sleep study may be warranted. In addition to the alpha-EEG finding, other sleep disorders have been identified in fibromyalgia patients, including sleep apnea (as well as the newly discovered form of interrupted breathing called upper airway resistance syndrome, or UARS), bruxism (teeth grinding), periodic limb movements during sleep (jerking of arms and legs), and restless legs syndrome (difficulty sitting still in the evenings).

Many medication options for sleep are listed in the Treatment Section if this website. You may also wish to read about a simple supplement combo that can ease nighttime struggles.

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13. I have a lot of GI problems. Are these symptoms part of fibromyalgia?

Irritable Bowel Syndrome (IBS), which can include constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea is found in roughly 40 to 70% of fibromyalgia patients. In addition, Gastrointestinal Esophageal Reflux Disease (GERD), is equally common in people with fibromyalgia. This can include heartburn, chest pain, regurgitation, indigestion, and a chronic cough, among other symptoms.

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14. How common are headaches in fibromyalgia?

Recurrent migraine or tension-type headaches are seen in about 70% of fibromyalgia patients and can pose a major problem in coping for this group. For some people, aggressive treatment of the migraines also provides tremendous relief of the overall pain of fibromyalgia. Myofascial trigger points, or those knots in your neck and shoulder muscles, are the primary cause of your headaches and they can be treated.

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15. Is TMJ disorder associated with fibromyalgia?

Temporomandibular Joint Dysfunction (TMD) causes tremendous jaw-related face and head pain in 25% of fibromyalgia patients. However, a 1997 published report indicated that close to 75% of fibromyalgia patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint, and not necessarily the joint itself.

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16. What factors aggravate the symptoms of fibromyalgia?

Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety, infections (flu or a cold), and over-exertion can all contribute to symptom flare-ups. Repetitive use of the same muscle group can strain the muscles and lead to more pain.

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17. Is fibromyalgia genetic (i.e., does it run in families)?

Fibromyalgia does run in families and there appears to be a strong genetic component. If one parent has this condition, the odds that a child will develop it is estimated to be 50%. Many research studies are under way to look at the genetic abnormalities that might be linked to various neurotransmitters involved in both pain and sleep regulation.

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18. What medical specialist should I see for treating my fibromyalgia?

The best doctor to see is one who has lots of experience treating fibromyalgia patients. There is no specific medical specialty that “owns” this condition, so it is important to inquire about a physician’s level of experience and their general philosophy for treating fibromyalgia.

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19. Does fibromyalgia get worse over time?

Studies show that roughly 25% of patients get worse over time, but another 25% get better. Some patients may be likely to improve because they have a good doctor willing to work with them to find which therapies they respond to. Also, as people age, other medical conditions can aggravate the symptoms of fibromyalgia, so it is imperative that patients seek aggressive treatment for age-related conditions, such as arthritis. A preventive medicine program with maintenance exercises and a healthy diet may prove worth while.

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20. Can I still work with fibromyalgia?

Balancing work and chronic illness is always a challenge, but most patients with fibromyalgia are able to remain employed. The answer to this question really depends upon one’s job and whether job accommodations can be made to ease the symptoms. Also, the development of other medical conditions may make fibromyalgia symptoms more severe and lead to the need to consider early retirement or disability. Studies show that roughly 25% of fibromyalgia patients receive some form of disability compensation at any given time. If you are experiencing difficulties with work, check out our disability-related articles in the Coping Resources section.

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21. Does weather affect symptoms and, if so, what climate is best for fibromyalgia?

Only a few studies have been conducted on this topic, and most indicate that variations in barometric pressure (which occur when a storm front moves in) may worsen the symptoms. In addition, extreme cold weather and cool drafts can cause you to shiver and this will make your tight, knotted muscles more sore.

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22. Is there a special diet I should be eating?

No, but a diet full of fruits and vegetables may supply your body with antioxidants, which are known to be useful for protecting your tissues and to minimize the development of “other” sources of pain. Irritable bowel syndrome and acid reflux are both common in people with fibromyalgia, so it is wise to avoid foods that irritate these conditions. Click here to read about how your diet can be affecting your symptoms.

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Fibromyalgia Network, P.O. Box 31750, Tucson, AZ 85751 (520) 290-5508.
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