If you have fibromyalgia, a good night’s sleep might seem like a lost cause.
“My brain just doesn’t shut down,” says Mattallana, 54, of Orange, Calif., founder and president of the National Fibromyalgia Association. “When I finally get to sleep, it’s interrupted.”
Pain may be the hallmark of fibromyalgia, but sleep problems are often its most intolerable symptom.
Fibro patients typically wake up feeling as if they never slept. They struggle to fall and stay asleep and often suffer from so many different sleep disorders that they’re exhausted.
Why?
Experts don’t know “whether the pain is responsible for the sleep problems or vice versa,” says Victor Rosenfeld, M.D., medical director of Sleepmed of Santa Barbara, Calif. Or both symptoms could be manifestations of something not yet known.
Researchers speculate that fibromyalgia may be linked with trauma, genetic mutations and autoimmune diseases.
A Mystery Disorder
Fibromyalgia — also called fibromyalgia medical syndrome (FMS) — affects about 6 million people between 20 and 50 years old; 90% are women.
* Unexplained pain
* Fatigue
* Headaches
* Arthritis
* Numb hands and feet
* Difficulty concentrating
* Mood changes
Pain is the tip-off, but some experts suspect that poor sleep plays an even bigger role.
Most patients ranked morning stiffness, fatigue and poor sleep as their biggest complaints — ahead of pain and forgetfulness, according to a 2007 study by noted fibromyalgia researcher Robert T. Bennett, M.D.
What causes the sleep problems? Here are the top 4 culprits:
1. Your racing brain
Danielle Liss, 33, a Las Vegas lawyer and fibromyalgia sufferer, says she frequently battles insomnia.
The reason?
Alpha waves were disrupting her sleep, according to a test in which Liss’s heart rate, breathing, leg movements and brain waves were monitored.
“It’s like trying to sleep after two or three cups of coffee,” says Jacob Teitelbaum, M.D., a fibromyalgia expert and author of From Fatigued to Fantastic (Avery).
That’s because fibromyalgia sufferers have an alpha wave pattern typically seen in awake people, according to Harvey Moldofsky, M.D., head of the Sleep Disorders Clinic of the Centers for Sleep in Chronobiology in Toronto.
The pattern, called alpha intrusions or alpha abnormality, prevents them from sinking into the deep sleep stages needed to feel refreshed.
The problem starts in the autonomic nervous system, which controls your body’s involuntary processes such as breathing, heart rate and digestion, with help from the sympathetic nervous system (SNS) and the parasympathetic nervous system (PNS).
For fibromyalgia sufferers, “the SNS is in overdrive and often stays dominant, even during sleep,” Teitelbaum says.
Sleep solution: Like many others with her condition, Liss finally got some shut-eye with prescription medications.
Drugs approved for fibromyalgia, such as Lyrica and Neurontin can help, but many patients need tricyclic antidepressant, which have a sedating effect, such as Desyrel, or atypical antipsychotics such as Zyprexa or Seroquel, which promote drowsiness.
Popular sleep aids such as Ambien, Lunesta and Sonata can bring on slumber, but they often don’t keep fibromyalgia insomniacs asleep.
When it wears off “most people with fibromyalgia will wake up,” says Lucinda Bateman, M.D., an internal medicine specialist who runs the Fatigue Consultation Clinic in Salt Lake City, Utah.
Many need a cocktail of medications to get sleep. Liss, for example, takes Klonopin and Pamelor, along with Ambien. On nights when her insomnia is worse, she also takes Tylenol PM.
“I can’t shut off my mind without pills and the perfect sleep environment,” she says.
But don’t mix and match on your own. Consult your doctor before taking any medication, prescription or over-the-counter.
2. Your restless limbs
About 20%-40% of people with fibromyalgia also have overactive limbs at night. This stems from two conditions: periodic limb movement syndrome (PLMS) or restless leg syndrome (RLS).
With RLS, people feel a creepy-crawly sensation in their legs at night. Legs may feel twitchy and tingly and they have an overwhelming urge to move them.
“The other night I forgot to take my RLS medication and I had to get up and run up and down the stairs 50 times,” Mattallana says. “That was the only thing I could do to not jump out of my skin.”
All movement disorders like PLMS and RLS chase slumber away.
“They pop you up into a more wakeful level, so you’re never able to get into a deep sleep,” Bateman says.
Sleep solutions: Drugs to treat RLS include:
* Dopamine agonists, such as Sinemet, Permax, Mirapex and Requip
* Anti-anxiety drugs, such as Klonopin and Ativan
* Anticonvulsants, such as Neurontin
Sometimes, relief is found in over-the-counter pain relievers, baths, massages, and warm or cool compresses. Cut back on caffeine and alcohol consumption too.
Bateman also advises patients to stretch several times a day and drink enough water. Stretching can relieve the restlessness and staying hydrated helps restore electrolytes, because a deficiency may contribute to symptoms.
3. Breathless in bed
We take it for granted that we breathe while we sleep. But that’s not a given for women with fibromyalgia.
About half of all fibromyalgia patients suffer from obstructive sleep apnea (OSA). Their throats collapse during sleep so they stop breathing for up to 30 seconds at a time.
Mattallana is one of them. After falling asleep at her desk and while driving, she went for a sleep study. It confirmed she had sleep apnea and was getting only 62% of the oxygen she needed.
“I was dumbfounded,” she says. “I used to hear of it only in overweight people, but many people with fibromyalgia are diagnosed with OSA.”
Sleep solutions: If you’re overweight, losing pounds can often be the cure.
Many patients also need continuous positive airway pressure (CPAP) or bi-level positive airway pressure (BiPAP) machines, which help raise the pressure in the airways.
With these machines, the patient breathes in compressed air through a nose or full-face mask hooked up to a machine.
Orthodontic devices that resemble mouth guards can help too, by keeping the lower jaw and tongue forward.
Some fibromyalgia sufferers have a related condition called upper airway resistance syndrome (UARS), in which airflow decreases in the upper airway, causing brief sleep disruptions.
Many sleep apnea treatments will work with UARS. Breathing aids, such as a nasal dilator or Breathe Right nose strips, can help too.
4. Teeth grinding
For some fibro sufferers, bedtime means bruxism, a condition that causes them to clench or grind their teeth, typically the result of stress and anxiety.
Bruxism can lead to temporomandibular joint disorder (TMD), in which the joint that connects the lower and upper jaws becomes stiff, painful and tender.
Sleep solutions: Experts recommend a night guard (a fitted, plastic mouthpiece that resembles a retainer) to protect the teeth from damage.
Relaxation exercises or meditation may ease the stress triggers.
Other remedies: physical therapy, warm compresses or medications, such as cyclobenzaprine (Flexeril), a muscle relaxant, or clonazepam (Klonopin), an anticonvulsant.
The Road to Better Sleep
Good lifestyle habits and sleep hygiene also can help bring on the zzz’s.
Liss, for instance, keeps her room no warmer than 73 degrees. She avoids heavy blankets, sleeps with an eye mask every night and uses earplugs when needed.
She has also given up caffeine and sees a massage therapist and a reflexologist, who puts pressure on her reflex points.
Regular exercise can help reduce the pain that keeps you awake. Mattallana walks on her treadmill every day. She also does yoga and meditation and avoids caffeine and sugar after noon.
For Liss, accepting her condition and the limitations it imposes has been the biggest boon to getting enough sleep.
“I’ve had bouts of depression because I want to do more,” she says. “But lately, when I need rest, I reprioritize and set realistic goals about what I can do.”
If you have fibromyalgia, here are some resources for more information and support:
The National Institutes of Health: Information and resources from the U.S. government’s medical research agency.
The National Fibromyalgia Association: A nonprofit support group for people with fibromyalgia.
The American Fibromyalgia Syndrome Association: This group’s mission is to fund scientific studies on fibromyalgia.
Fibromyalgia Network: A nonprofit that offers information about the disease from top fibromyalgia clinicians and researchers.
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