Do you sleep so lightly that you lay awake for the greater part of the night? Or perhaps you wake up stiff, achy and so tired you could use more sleep. Regardless of the source of your nighttime battles, studies show that when fibromyalgia (FM) patients improve the quality of their sleep, they feel better and are more able to handle daily challenges. If you are wondering what you can do to wake up feeling more rejuvenated and refreshed from a night of sleep, consider the approaches below.

Easy Breathing is Essential

“The fact that we breathe through a tube of any size means there is going to be flow resistance,” says Jed Black, M.D., director of the Sleep Disorders Clinic at Stanford. The tube he refers to consists of the nasal passages and windpipe (or trachea) that everyone must use to draw in air. When this airway collapses, causing a complete blockage of airflow during sleep, the disorder is referred to as obstructive sleep apnea (OSA). When the airway only partially relaxes or there are structural problems that cause partial blockage of the airflow (such as enlarged tonsils, a lazy tongue that falls back into the airway, etc.), it may be referred to as upper airway resistance syndrome (UARS).

“It is yet to be determined how much flow resistance actually causes sleep disruption,” says Black. However, when your lungs have to work too hard to pull in the air, there is the potential for this situation to lead to an arousal to a lighter stage of sleep. People with OSA generally snore, but people with UARS may sleep very quietly, which may be why this disorder is often overlooked.
What are your odds of having OSA or UARS? “I don’t think that all FM patients are going to have a sleep related breathing disturbance,” says Black, “but clearly a disproportionate percentage of these patients will, compared to the general population.”

Airway Treatments

Treating your sleep disorder without knowing the cause can be hit or miss. Why live in the dark? See the text box: Is a sleep study worth the hassle? If you do have OSA or UARS, consider the following possibilities:

• Open up your airways - This could include removing tonsils, cutting back the soft tissue in the nasal cavity, narrowing the septum, or trimming the back of the palate that can block off your airways when you sleep in a reclined position. Get a referral to an ear, nose and throat (ENT) specialist who understands how important the airways are for sleep. In addition, don’t assume that nasal congestion and post-nasal drip are just nuisances you can live with. The ENT doctor may be able to treat these conditions with nasal sprays and medications like Singulair.
  
• CPAP (continuous positive airway pressure) - If you have been diagnosed with OSA, you owe it to yourself to give this therapy a serious attempt not only to improve your sleep, but also because this condition poses a serious risk factor for cardiovascular disease. The good news is that using CPAP for as little as six months can reverse the negative cardiovascular effects of OSA.¹ In addition, continued use will usually reduce daytime fatigue and aid with weight loss. Despite its benefits, this therapy may be difficult to tolerate. The most common reasons for this includes skin sensitivities to the mask, headaches from the straps that hold the mask in place, and irritation of nasal allergies.
  
• Oral appliances - “For someone who has a reduced front to back airway dimension, bringing the jaw forward will pull the base of the tongue forward,” says Black. For these devices to work, one must have adequate mobility of the jaw joint. Otherwise, oral appliances may produce jaw pain.
  
• Sleep Position - Avoid sleeping on your back so you do not have to breathe against the weight of your chest and neck tissues. If you sleep on your side, your tongue is also less likely to fall back and block the airway. To keep your chest wall muscles open and make it easier to breathe, sleep with a pillow propped between your arms as you lay on your side.

Reducing Nighttime Arousals

If you sleep light, your aches and pains will likely awaken you, as will noises and other distractions. Hypnotic or sedating medications will reduce your risk for arousals so you will be more likely to sleep throughout the night without constant awakenings. The most frequently used agents are as follows:

• Ambien (zolpidem) is the number one drug used for chronic insomnia. It is available in a generic that may only last 4-6 hours and a newer controlled delivery (CD) formula designed to last throughout the night. Ambien is not a benzodiazepine. Other than making you sleepy, it does not interfere with the natural rhythm of your sleep processes. If the generic formula does not give you 6-7 hours of sleep, the newer version may be warranted but the co-pay will be higher.
  
• Trazodone is the second most commonly prescribed sleeping agent. It is an old antidepressant with sedating properties, but its usefulness as a sleep aid has never been documented.² It has several side effects, and worsens existing restless legs or limb movements during sleep.
  
• Lunesta (eszopiclone) is similar to Ambien, except it lasts longer and is FDA-approved for the treatment of chronic insomnia. According to Alan Spanos, M.D., a pain specialist in Chapel Hill, NC, “Lunesta has been fine for some patients and intolerable for others because of morning grogginess or the wonderfully named symptom of ‘taste perversion.’” If the taste bothers you, try wrapping the capsule with bread before swallowing.
  
• Seroquel (quetiapine) has multiple modes of action, but at low doses it can be sedating. In research, healthy subjects took either 25 or 100 mg of Seroquel and underwent a sleep study. Random noise was introduced into each subject’s room to determine the medication’s ability to aid sleep under stressful conditions.^3,4 Both doses of Seroquel improved sleep, but the two common side effects, lightheadedness and increased limb movement, were more likely to occur at the higher dose. This drug may be beneficial for FM patients whose aches and pains arouse them throughout the night.
  
• Clonazepam, gabapentin, Mirapex, and Requip may be used to treat restless legs and limb movement disorders. Often, FM patients are unaware that movement disorders disrupt their sleep.⁵
  
• Melatonin is a hormone produced by the body to help regulate sleep. It is available over-the-counter as a supplement, and it has hypnotic properties that will help you fall asleep.

Enhancing Slow Wave Sleep

Slow wave sleep (SWS) is the deepest, most restorative level. Disruption of SWS in FM patients was one of the first objective findings, and intuitively, drugs that enhance SWS would seem great for FM treatment. Lyrica and Xyrem are two medications that fall into this category, but their side effects may limit their use for some patients. Other medications that enhance SWS are currently being studies and should be on the prescription market in the near future.

• Lyrica (pregabalin) is FDA-approved for treating FM pain, and one clinical trial in FM patients indicated that it improved both pain and sleep.⁶ Lyrica is thought to produce its analgesic effect by reducing the release of neurotransmitters that cause pain. As for its effect on sleep, a study in 24 healthy adults showed that 450 mg of the drug increased SWS by 50 percent.⁷ So while Lyrica comes with dosage instructions to take the medication during the day, it may aid sleep when taken at bedtime.
  
• Xyrem (sodium oxybate) a derivative of GHB, is an FDA-approved sleeping agent for people with narcolepsy, which is a disorder that produces excessive daytime sleepiness. The drug is tightly regulated and some doctors are reluctant to prescribe it. However, researchers are in the final stages of testing this medication for treating FM pain and sleep. Preliminary studies showed a 34 percent improvement in sleep, pain, fatigue, and well-being.⁸ “The trial provides important clinical evidence that Xyrem can reduce pain and improve function for patients with FM,” says study investigator I. Jon Russell, M.D., Ph.D., of the University of Texas at San Antonio.
  

1. Duchna HW, et al. Sleep Breath 9(3):97-103, 2005.
2. Mendelson WB. J Clin Psychiatry 66(4):469-76, 2005.
3. Cohrs S, et al. Psychopharmacology 174(3):421-9, 2004.
4. Cohrs S, et al. Psychopharmacology 174(3):414-20, 2004.
5. Krishnan E, et al. J Clin Rheumatol 12:227-81, 2006.
6. Crofford LJ, et al. Arthritis Rheum 52(4):1264-73, 2005.
7. Hindmarch I, et al. SLEEP 28(2):187-93, 2005.
8. www.jazzpharmaceuticals.com/news.php?id=17

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There is no “cookbook” way to treat a person with fibromyalgia (FM) or chronic fatigue syndrome (CFS). First, other “hidden” disorders need to be identified and treated (January 2003 Journal). Then sleep needs to be targeted. Pain specialist Steve Fanto, M.D., of Phoenix, AZ, says, “The key is to be flexible with managing a patient with FM. Doctors can’t have one or two drugs in their bag of tricks because they will probably fail with their treatment of FM patients.” Addressing nighttime problems, Fanto adds, “Sleep in FM is like Teflon. You can attack fibromyalgia with all the pain therapies you have, but nothing sticks, nothing works ... unless you first address the sleep problem that most patients have.”

Targeting sleep may include medical devices, surgery, or medicines that reduce the number of arousals or maximize the amount of time spent in deep-level sleep. Medical Director Jed Black, M.D., at Stanford’s Sleep Disorders Clinic, talks about using Xyrem, a sleep medication, to relieve FM/CFS pain (January 2006 Journal). If the agents you use for sleep have ceased to work, Kim Jones, Ph.D., F.N.P., offers a strategy for preventing tolerance by alternating nighttime medicines. Several other noted physicians describe their experiences prescribing Ambien, Mirapex, Seroquel, Xyrem, Lunesta, and Lyrica to aid sleep.

Available pain therapies may include more than what your doctor is willing to prescribe. Researcher Kevin P. White, M.D., Ph.D., describes the results of his one-year opioid study in people with FM and comments on the reluctance of physicians to prescribe this class of medications (January 2005 Journal). “It perplexes me that there appears to be such a hypocritical stance against pain management for FM patients. Doctors tell you, ‘Yes, I believe that your pain is real.’ But then they say, ‘No, I won’t treat it.’ What kind of medicine is this?” Clearly, physicians are divided on how to treat FM pain.

Lyrica is the first Food and Drug Administration (FDA) approved medication for treating FM, but it also has many side effects. How well does it work, and what can be done to minimize side effects? Perhaps you might do better on Cymbalta or other drugs on the market. The point is, each issue of the Fibromyalgia Network Journal contains “insider” advice from the experts regarding your treatment choices, including nondrug therapies.

Rheumatologist Carol Beals, M.D., of Lansing, MI, comments, “I may use a low dose of an antidepressant (such as Cymbalta), an anti-epileptic drug (such as Neurontin or Lyrica), a sleep agent, and sometimes a mild pain medication. When you use all of them, you hit the pain from four different ways and you get ahead of the pain.”

Our 2005 survey on headaches revealed that 80 percent of FM patients battled head pain that often did not respond to medications. Based on many research studies, most headaches appear to be caused by myofascial trigger points (MTPs), which are painful nodules in the muscle fibers that can develop anywhere in the body (April 2007 Journal). The pain from these nodules can be mistaken for a heart attack, breast cancer, or digestive disorders (July 2007 Journal). “At least 70 percent of FM pain is due to MTPs),” says Hal Blatman, M.D. (January 2007 Journal). Doctors often overlook the cause of this pain because they are focused on possible diseases of the organs beneath. Treatment for MTPs include coolant spray while stretching and specific forms of massage.

The results of a patient survey rated professional massage as the number one choice of nondrug therapies (July and October 2004 Journals). Staying functional is important, so we have compiled a special supplement on Diet and Exercise specifically tailored for FM/CFS patients.

Physicians deal with thousands of illnesses, with the symptoms of pain and fatigue being quite elusive to them. Your doctor can’t be an expert on everything, but with the ad-free knowledge that Fibromyalgia Network provides its Members through our quarterly Journal, monthly eNews Alerts, and website, you will be in a position to help your doctor direct your care.

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The lack of an objective lab test for fibromyalgia (FM) and the overlapping condition of chronic fatigue syndrome (CFS) makes it rough on patients. Understandably, you want a prompt diagnosis and therapies that work! Although standard blood work comes back normal, there are a number of tests that prove FM is real. Fibromyalgia Network keeps patients up to date. Listed below are a few discoveries mentioned in past issues of the Fibromyalgia Network Journal:

• Two important pain-transmitting chemicals are elevated in the spinal fluid of people with FM. Both substance P and nerve growth factor are increased several-fold and are released from your nerves in response to pain. These findings set FM apart from other painful conditions. Unfortunately, measuring these transmitters is complicated and involves risk, so standardized tests for these two chemicals are not available to help your doctor with an FM diagnosis. In addition, even minutely elevated levels of substance P can disrupt sleep, which also could explain why you feel as though you are awake all night long (July 2006 Journal).
  
• Do you feel as though your memory processes are getting foggy? Are you working twice as hard to concentrate on tasks at hand? One standardized memory test found that 86 percent of the FM patients evaluated could not remember new information if they were distracted (October 2006 Journal). Your perception of failing memory is valid.
  
• Two experts confirm that sleep disorders related to breathing difficulties at night are highly prevalent in FM/CFS patients and offer advice about selecting a sleep doctor (July 2007 Journal).
  
• Not only can poor quality sleep contribute to pain, but also pervasive sleep disruptions are likely to make you more vulnerable to emotional symptoms such as depression and anxiety (October 2007 Journal). And while you are already not getting enough sleep, the quality of sleep you do obtain deteriorates as you age, particularly in women (April 2008 Journal).
  
• A person is 8.5 times more likely to develop FM if they have a family member who has FM, strongly suggesting a genetic link (April 2008 Journal).
  
• Anyone doubting that FM/CFS are diseases of the central nervous system needs to read about the brain imaging studies showing that an accelerated loss of gray matter in patients appears to be linked to low dopamine levels (July 2007 Journal). The hardest hit area is the hippocampus, which plays a major role in short-term memory, while dopamine is important for controlling pain and sleep.
  
• Abnormalities in FM are not restricted to the central nervous system. Greatly reduced muscle blood flow (April 2006 Journal), high risk of hypertension and metabolic disease (July 2006 and April 2007 Journals), and low vitamin D levels (July 2007 Journal) have been documented.
  
• Reduced muscle blood flow is only part of the reason why you experience exercise intolerance (e.g., every time you overdo it, you pay the price of increased pain). Researchers have found that FM patients have high levels of a nitric oxide-producing enzyme in their muscles, and the greater the enzyme concentration, the more difficult it is for you to exercise (April 2006 Journal).
  

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Having trouble relating to your family and friends about your fibromyalgia (FM)? You are not alone. Fibromyalgia Network surveyed more than 2,000 patients and found that this was the most common problem they faced. As a result, we have compiled a special supplement that focuses solely on Relationships. To help you overcome the frustrations of being chronically ill, here are a few survival tips:

• In a survey of 2,220 patients, being up front and honest with family members about your FM is an important communication strategy. There is no reason to feel guilty because you have to cancel out on attending an event, or you need to rest. As much as they love you, your family can’t read your mind—talk to them (July 2007 Journal).
  
• Listen to your thoughts and try to avoid thinking of yourself in a negative sense. In other words, make it a habit of saying nice things to yourself, because you will need that inner voice to motivate you throughout the day.
  
• Learn to say NO more often so that you can spend your time doing what you want to do, rather than living up to other people’s expectations.
  
• Don’t settle for a physician who doesn’t believe or respect you. Doctors offer tips in the January 2008 Journal on how to evaluate the quality of your care.

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