Not sleeping well? Experiencing a lot of daytime sleepiness? Not thinking clearly? These symptoms are all common to chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) but they don’t always entirely derive from it… not even in people with ME/CFS/FM.
If the experience of one person with chronic fatigue syndrome is at all representative, thinking that all your symptoms come from ME/CFS or FM could be costing you dearly in energy and health.
Carole has had chronic fatigue syndrome for over 30 years, but the last year, as she started experiencing heart palpitations, angina, and problems breathing, was probably the worst. These heart symptoms sent her to a well-known ME/CFS doctor who focuses on heart issues. One echocardiagram later she was told she had heart failure and she doggedly began a protocol she described as containing a ‘staggering’ number of medications, including anti-convulsants, which ended up making things considerably worse.
Other cardiologists were brought in to assess her symptoms, and twelve thousand dollars was spent on another echocardiogram, a Holter monitor test, several EKGs, and several lab tests
On the advice of a local doctor, she declined to do the $6,000 vascular dye test requested, and with her head feeling stuffy went to see her ear, nose, and throat (ENT) doctor. He promptly ordered a sleep study which indicated that sleep apnea was causing her to spend much of night waking up repeatedly (up to 30 times/night).
Sleep apnea… not heart failure after all, but sleep apnea. A common, easily diagnosed, and usually readily treatable sleep disorder.
Sleep apnea may not be heart failure, but it is nothing to mess around with either. Most problems with sleep apnea occur when your tongue, tonsils, or other pieces of floppy tissue in your throat or nose cover up your airway depriving you of oxygen. Your heart rate slows in order to conserve the oxygen that is left. As your oxygen starts to run out, your heart bursts into action, jolting your body enough to force those flaps open and get you some air.
This slow down/speed up (crash/push process) puts a tremendous strain on your heart, increasing your risk of stroke, cardiac arrest, high blood pressure, and diabetes. A recently published study found that having sleep apnea increases your risk of sudden cardiac death at night as you ‘sleep‘. (Sudden cardiac death at night appears to be unique to people with sleep apnea. This may be what happened to Rich Von Konynenburg, who did have a CPAP machine.)
Sleep Apnea in Progress
With her heart palpitations, trouble breathing, and angina, Carole was in pretty bad shape. But three to four weeks after starting using the CPAP machine she reported:
“I cannot tell you the difference in my energy level, dizziness, even my gut problems … [the machine is] not easy to get used to, but the longer I use it the better I feel. The improvement in [cognition] is astounding. I am able to concentrate, think clearly for a change, and mental fatigue is much improved. I’m active, except for some rest periods, all day long. I feel it has saved my life.”
Check out a case report of a woman diagnosed with fibromyalgia who’s symptoms completely disappeared after being treated for sleep apnea.
Let’s learn some more about sleep apnea.
About Sleep Apnea
It’s Common (and Commonly Missed)
Sleep apnea is common. One in five people have mild sleep apnea and one in 15 has at least moderate sleep apnea, and like ME/CFS/FM, it’s under-diagnosed. Twelve million people in the US, most of whom are not diagnosed, are believed to have sleep apnea. A study following 10,000 people who did sleep studies found that nearly 80% had sleep apnea.
Study findings vary, but some small studies suggest the prevalence of sleep apnea may be higher in ME/CFS/FM. Fifty percent of ME/CFS patients had sleep apnea in one study and forty-six percent in another. Half the people diagnosed in a small sleep clinic study met the criteria for fibromyalgia. Over forty percent of FM patients were found to have sleep apnea in another small study.
Other ME/CFS experts such as Dr. Klimas doesn’t find it that much but does encourage patients to get sleep studies done. One in every 15 or 20 people with ME/CFS diagnosed sleep apnea is about 50,000 people who are missing out on the chance of real improvements in their health. Given how rare those are – this is not an opportunity to be missed.
Interestingly, women with sleep apnea are more likely to have fibroymalgia, migraines, depression and irritable bowel syndrome than men. They also tended to have lower self-reported energy levels than men.
Symptoms Associated with Sleep Apnea
The symptoms of sleep apnea are similar to those of ME/CFS. Throw in post-exertional malaise and stimuli issues and take away choking sensations and you’d have a pretty fair match for ME/CFS, and a diagnosis perhaps even an experienced ME/CFS doctor might miss.
- Daytime sleepiness or fatigue
- Dry mouth or sore throat upon awakening
- Headaches in the morning
- Trouble concentrating, forgetfulness, depression, or irritability
- Night sweats
- Restlessness during sleep
- Sexual dysfunction
- Sudden awakenings with a sensation of gasping or choking
- Difficulty getting up in the mornings
(On the basis of these symptoms, one would think that everybody with ME/CFS should do a sleep study.)
- Being male
- Being overweight
- Being over age 40
- Having a large neck size (17 inches or greater in men and 16 inches or greater in women)
- Having large tonsils, a large tongue, or a small jaw bone
- Having a family history of sleep apnea
- Having astroesophageal reflux or GERD
- Having nasal obstruction due to a deviated septum, allergies, or sinus problems
Note, though, that Carole is neither male nor is she overweight, and she doesn’t have large tonsils, a large neck size, or a family history of sleep apnea. She does have GERD, and “boomer” ME/CFS patients might take note that she is over the age of forty.
Thirty to fifty percent of people snore and most do not have sleep apnea, but loud snorers should note that snoring is common in sleep apnea. Snorers with sleep apnea display a pattern in which they stop breathing up to sixty seconds at a time and then jerk themselves ‘awake’ in order to get oxygen. They may also sound as if they’re gasping or choking while they sleep.
Your partner should be able to determine if you might have a sleep apnea-like breathing pattern, or you can tape record yourself.
The CPAP (Continuous Positive Airway Pressure) Machine
When people have problems with their CPAP machine, it’s usually because the mask does not fit right or is irritating, or the dry air dries out their throat, etc. Some simple changes can help: A humidifier can take care of the sore throat problem. Wearing a baseball cap under the mask, oddly enough, can be very helpful. A face guard to reduce sounds, a ‘snuggi’, using a ‘bipap’ machine instead, and other accessories/alternative can make this type of therapy more tolerable.
Since sleeping on your back places you more at risk of sleep apnea, sleeping on your side is better. Some people sew tennis balls into the back of their sleeping clothes to keep themselves from sleeping on their back.
An oral appliance that pushes the jaw forward and opens up the breathing passages can be helpful in mild to moderate cases of sleep apnea. More severe cases will need to use the CPAP machine with its associated ‘mask.’
If CPAP doesn’t work work or you want to consider alternatives, there are less invasive remedies such as exercises (including tongue exercises), stretches, herbal remedies, and even musical instruments that improve your breathing. Check out Alternative and Natural Remedies for Sleep Apnea.
More Sleep Help from Health Rising
- How raising the head of your bed could help you sleep better
- New sleep drug expected to hit the market this year
- Sleep Apnea Guide - an excellent resource for Sleep Apnea
- Excellent WebMD blog on Sleep and Chronic Fatigue Syndrome
- The Sleep Zone
Have you been tested for, or had any experiences with, sleep apnea? Please tell us in the comments below.
Have your ’ME/CFS/FM’ symptoms turned out to be something else? Have a similar story you think others should know about? Let us know in the comments section or contact me here.