How did you sleep last night? If you have fibromyalgia, your answer is probably not very well. I know the feeling! I’ve struggled to get a good night’s rest for years.
Unrefreshing sleep is one of the primary symptoms of fibromyalgia. No matter how much we sleep, we still wake up exhausted. Multiple research studies have confirmed our disordered sleep. We don’t spend enough time in the deeper, more restorative stages of sleep, and some studies have also shown that we have what are called alpha wave intrusions, which are associated with wakefulness, during the deeper stages of sleep.
“At this point, there are a lot of mysteries about why fibromyalgia patients don’t sleep well, why they’re fatigued and what causes this, but unfortunately the findings we do have don’t tell us very much about what to do about getting deeper sleep,” said Dr. Karl Doghramji, director of the Jefferson Health Sleep Disorders Center in Philadelphia.
Until researchers figure it out, there are a few steps we can take to try to improve our sleep quality. I reached out to three different sleep experts around the country and asked them to share their best advice for getting better sleep with fibromyalgia. Below are their most useful tips.
▪ Getting a good night’s sleep actually starts in the morning. “It is essential to either be exposed to natural sunlight or a light box, such as [the] goLite, for the first hour of waking up to be able to maintain a good circadian rhythm,” said Catherine Chua, behavorial sleep medicine specialists at Mt. Sinai Integrative Sleep Center in New York City. Going for a short walk or doing some light exercise in the morning can help stabilize the circadian rhythm, too. (Yes, I know it’s hard to exercise with fibro!)
▪ Keep a consistent sleep schedule. “It’s critical for fibro patients to keep regular bedtime hours,” Doghramji said. “By regular, I’m emphasizing more the time they get up in the morning [and] not so much the time they go to bed at night. The time one gets up in the morning is a strong determiner of one’s next 24-hour circadian rhythm, including the time the person is likely to fall asleep the next night, so regularity is of critical importance. That applies to weekends and weekdays and vacations as well.”
▪ Consider getting a sleep study. “If you have frequent interruptions in your sleep, daytime drowsiness, unusual movements during sleep, snoring or breathing pauses, and/or difficulty falling/staying asleep that you believe are not due solely to your fibromyalgia, you should discuss these symptoms with your primary-care physician or sleep specialist,” said Dr. Clete Kushida, medical director of the Stanford Sleep Medicine Center in Stanford, California. Sleep apnea, restless legs syndrome and periodic limb movement disorder are all common comorbidities in fibromyalgia patients. The diagnosis and treatment of these disorders can improve sleep.
▪ Take an afternoon siesta. For those who are able to nap, “I do recommend a brief nap in the afternoon around 1 p.m. or so, something along the lines of a 15-minute or half hour nap – no more than that,” Doghramji said. “If you nap more than that, it can actually disrupt your next night’s ability to sleep well.”
▪ Wind down and relax for a couple of hours before going to bed. Read a non-stimulating book. Meditate. Listen to calming music. Take a warm shower or bath to relax your muscles.
▪ Put down the mobile devices, turn off the TV and dim the lights. “Try to eliminate as much light as possible for a couple of hours before sleep,” Doghramji said. “Light has a way of disturbing circadian rhythms by diminishing melatonin levels, so making the environment as dim as possible for a couple of hours before bedtime may be helpful.”
▪ Block the blue light. If you absolutely have to use your mobile devices or watch TV before bedtime, consider purchasing a pair of blue-light-blocking glasses. (You can buy inexpensive ones on Amazon.) For Android smartphone users, there are blue-light-blocking apps that you can download. Newer iPhones and iPads come with a built-in “night shift” option. If you have older devices, Amazon sells blue-light-blocking screen protectors. For laptops and desktops, you can download f.lux.
▪ Avoid overeating or drinking excessive fluids. Eating too much close to bedtime can cause acid reflux and tummy troubles. Drinking too many fluids will have you visiting the bathroom all night long.
▪ Avoid alcohol close to bedtime because it can disrupt sleep.
▪ Invest in a quality bed. “Ensure that your bed surface/mattress is good and does not cause exacerbation of your fibromyalgia,” Kushida said.
▪ Make sure your bedroom is as dark as possible. Cover or replace bright alarm clocks and other device lights. Install room-darkening shades.
▪ Try progressive muscle relaxation. “From my clinical experience, patients with chronic pain find progressive muscle relaxation helpful as tensing and releasing different parts of the body helps individuals relax and improve pain and sleep issues,” Chua said.
▪ Seek help. “Don’t suffer too long,” Doghramji advised. “Go see a doctor. If you don’t get the right answer from your family doctor, or they just jump right to a sleeping pill, go to a specialist. There are a lot of sleep specialists out there who can be helpful, and I think they’re underutilized by fibromyalgia patients.”
I also asked if there were any supplements or prescription sleep aids that might be helpful for improving deep sleep. Here are their responses:
▪ Chua: “Gabapentin is found to be effective in increasing slow-wave sleep, which is often referred to as deep sleep. The physicians I work with often prescribe it at a low dose for patients who have sleep efficiency but complain about the quality of their sleep. Trazodone is another medication the sleep center uses to enhance sleep quality in patients.”
▪ Doghramji: “In terms of supplements, the one that’s probably most researched is melatonin, but there’s no good evidence on what dose should be used. I typically recommend a low dose close to bedtime, something like 1 milligram or so, maybe a half hour before going to bed. Some people will take that, and nothing happens. For those, I recommend a gradual dose increase up to 3 milligrams. … There are three medications which are meant to not only help you fall asleep but stay asleep, and those are Ambien extended release or Ambien CR (generic name: zolpidem), Lunesta (generic name: eszopiclone) and Belsomra (generic name: suvorexant). They’ve been shown in patients who have difficulty with sleep initiation or maintenance to actually improve the quality of sleep. One of their major negatives as a collective group is that they can cause daytime sedation. Secondly, all three medications have a Drug Enforcement Administration scheduling. What that means is they may have a tendency for an increased likelihood for abuse and diversion. Thankfully, that tendency is not that high with these drugs. Long-term studies have shown that people tend not to escalate the use of these drugs in general.” These drugs are typically not recommended for people with a history of drug abuse.
▪ Kushida: “There aren’t any medications that I would recommend unless first being evaluated by a sleep specialist. The best treatment for chronic insomnia would be cognitive behavorial treatment for insomnia.”