Unrefreshing Sleep – Not Poor Sleep – Synonymous with ME/CFS and FM
Poor sleep has been long held to be synonymous with ME/CFS and FM, and indeed the survey found that fairly poor (40%) and really poor (27%) sleep was common. However, about a third of the survey participants stated their sleep was OK (25%), pretty good (6%) or excellent (1%). Poor sleep is clearly not a necessary part of the diagnosis.
|Really poor||280 – 27%|
|Fairly poor||409 – 40%|
|Pretty good||64 – 6%|
|Excellent||14 – 1%|
On the other hand, unrefreshing sleep is. The vast majority of respondents said they woke either exhausted (44%) or unrefreshed (42%). Eleven percent said they felt “so-so”, and only 2% said they felt “fairly good” or better upon awakening. The survey suggested that even people who felt their sleep was OK were still generally waking up feeling beat up for the most part.
As expected, given the alpha intrusions documented in fibromyalgia, interrupted sleep was very common, with most people (53%) waking up between 2-5 times a night and over thirty percent stating they wake up 5-9 times a night. A fairly large (11%) and quite unfortunate group that is apparently getting very little deep sleep stated they wake up 10 or more times a night.
Insomnia is not often mentioned as a major sleep issue, but it emerged as a very prominent issue with no less than 42% of respondents stating it was a “major” problem and 36% stating it was a “moderate” problem. Only 8% of respondents stated it was “not a problem”.
Going to sleep very late can be a cause of poor sleep and fatigue because it throws your circadian rhythms out of whack. Most people went to sleep before midnight (73%), but a significant portion (23%) go to sleep after midnight and 9% stated they usually go to sleep after 2 am.
Early wakening was also a common theme with 20% of people stating they usually woke before 5 am and 29% between 5 and 7am. The percentage of late-wakening folks (10% waking after 11 AM) lined up well with the 9% that went to sleep after 2 am.
Almost half (48%) of the respondents reported they believe they get less than 5 hours of sleep a night with 7% stating they get less than 3 hours a night. About half (48%) reported they get relatively normal amounts of sleep (6-10 hours) and just 4% stated they get more than 10 hours.
Factors That Negatively Affect Sleep
We asked how much ME/CFS and FM patients felt a number of factors (activity levels, pain, emotional stress, diet, alcohol intake, etc.) negatively affected their sleep. We didn’t ask how frequently these factors occurred; we simply asked when they occurred and how much they negatively affected sleep.
|Negative Factors||Very Much||Somewhat||Not much|
|Too much activity/exercise during the day||407||310||352||119|
|No exercise (e.g. walking) during the day||128||369||523||164|
|Emotionally stressful events||740||338||94||24|
|Large meals at night||133||278||629||140|
|Small meals at night||44||165||803||159|
|Drinking caffeinated beverages after the morning||192||221||567||205|
|Going to bed after 11 or 12 pm||242||261||529||158|
|A partner who snores||278||195||348||350|
Pain and Emotional Stress Stand Out
In this mixed group of FM and ME/CFS patients pain and emotional stress were easily the two biggest factors cited as very negatively affecting sleep.
Sixty-four percent of the respondents said that pain “very much” negatively affected sleep, twenty-six percent said it “somewhat” affected sleep and only eight percent said it was not much of a factor. Pain was also the clearest-cut issue with only 13 people out of the almost 1200 respondents not being sure of the effect it had.
The results suggest that concentrating on reducing pain before sleep could be very important. Pain has long been known to negatively affect sleep. A recent study found that neuropathic pain activates a part of the brainstem (the locus coeruleus) that promotes wakefulness. Another study found that neuropathic pain induced the firing of serotonergic neurons, again in the brainstem, that increased wakefulness and reduced deep sleep. If these studies are correct it’s not the pain per se that’s keeping people awake, but the promotion of wakefulness by the brainstem. Bansai recently proposed brainstem problems could help explain the extraordinary debility and sensory problems often found in the most severely ill ME/CFS patients.
Dr. Bateman has suggested that the hypothalamic dysfunction could play a key role in ME/CFS and/or FM. The hypothalamus and the brainstem are two major determinants of wakefulness in the brain.
Sixty-three percent said that “emotionally stressful events” very much had a negative effect on sleep. Twenty-nine percent said they had somewhat of an effect and 8% said they did not have much of an effect.
Again, we don’t know how commonly these factors are affecting sleep. I, for instance, put emotionally stressful events as having very much of a negative effect, but these events happen rarely for me. When they do, though, they knock my sleep for a loop like nothing else.
Studies indicating that the flight/fight system remains on during sleep could provide a reason why emotional stress had such negative effects on sleep. A stressful event that enhances an already over-active system could make it more difficult for the system to calm down enough to enter sleep. Toni Bernhard’s blog ”
Toni Bernhard’s blog “Turning Straw Into Gold” and “The Last Best Cure” blog series are two places to pick up practices that can reduce emotional stress. (Toni’s latest book on a Buddhist approach to peace and well-being is titled, ironically, “How to Wake Up“.)
Activity Levels/Exercise Effects
Dr. Bateman warned that too much activity could exacerbate the “wired and tired” condition that’s so common in these disorders, and indeed 35% of the respondents stated that too much activity during the day negatively affected their sleep. A similar percentage said too much activity/exercise had “not much” effect on their sleep. Twenty-six percent said it had a somewhat negative effect on their sleep.
Too little activity/exercise has also been cited as potentially having negative impacts on sleep, but it only showed up as major factor (very much negatively affected their sleep) in 13%. Thirty-seven percent said that doing too little activity did somewhat negatively affect sleep, while 52% did not find that it was an issue.
None of the other potentially negative factors had large effects on sleep for most people.
Meals – Large meals at night are often cited as a no-no and some people (13%) felt they very negatively affected their sleep, but most people (63%) did not feel they had much of an effect.
Small meals – I often have trouble going to sleep if I don’t have a robust meal in the evening, but only 4% reported that small meals negatively affected them.
Sleep drug use was not particularly high. The only drugs more people had tried than had not tried were antihistamines. In general about a third of the respondents stated they had tried any one drug, with less than ten percent trying Seroquel, Sinequan, or Doxepin elixir.
They weren’t missing much. It’s true that for some people the sleep drugs work wonderfully, but only a small percentage – generally less than 10 percent – of respondents were so lucky.
Ambien was rated to be very effective by the highest percentage of responders at 19% with Klonopin second at 15%.
Most sleep drugs (7/11) had more reports of being “very harmful” than being “very effective” with Lyrica (30%), Neurontin (20%), Seroquel (32%), Sinequan (24%), and Xyrem (22%) having the highest percentage of “very harmful” ratings. Lyrica had among the lowest “very effective” ratings (6%).
A substantial number of people (25-40%), however, found sleep drugs to be at least “somewhat effective.” Klonopin and Ambien (53%) were tops in the effectiveness category with antihistamines (48%) and Flexeril, a muscle relaxant, coming in close behind (47%). Flexeril is commonly used off-label in FM to reduce pain, and this survey suggests it has a major positive effect on sleep in ME/CFS and FM.
The most surprising result was the very low success rate (2% “very effective”) of one of the most highly touted and most expensive sleep drugs to come out in memory – Xyrem. Twenty-two percent found it to be very harmful. Only 44 people had tried it, however. [Xyrem is also extremely expensive, and is only available from one pharmacy in the United States. Years ago it could be purchased at health-food stores and was quite cheap… until it got a reputation as a “date-rape” drug. Now it’s $2000-$3000 for a 30-day supply – Ed.]
|Drugs||Very effective||Somewhat Effective||Not Effective||Somewhat harmful||Very harmful|
|Antihistamines||35 (5%)||286 (43%)||270||45||29 (4%)||424|
|Ambien (Zolpidem)||70 (19%)||128 (34%)||78||50||47 (13%)||707|
|Desreyel (Trazodone)||34 (9%)||78 (26%)||81||45||62 (21%)||753|
|Elavil (Amytriptyline)||44 (8%)||174 (33%)||162||70||83 (16%)||571|
|Flexeril (Cyclobenzaprine)||32 (10%)||123 (37%)||114||36||31 (10%)||729|
|Klonopin (Clonezapam)||46 (15%)||116 (38%)||82||23||35 (15%)||763|
|Lyrica (Pregbalin)||23 (6%)||93 (23%)||125||43||120 (30%)||677|
|Neurontin (Gabapentin)||33 (8%)||107 (26%)||147||46||85 (20%)||663|
|Seroquel (Quetiapine)||17 (13%)||31 (23%)||29||13||42 (32%)||916|
|Sinequam (Doxepin elixir)||9 (8%)||27 (24%)||28||21||27 (24%)||933|
|Xyrem (Sodium oxybate)||1 (2%)||5 (11%)||19||9||10 (22%)||996|
Supplements, including Herbs
If there were few really effective sleep drugs, there were even fewer really effective supplements. Melatonin, as expected, was the most commonly tried supplement (n=646) and was the most effective, but was still judged “very effective” by only 11%. No other supplements had more than 6% of respondents state they were “very effective” and most people stated they were not effective.
The good news is that from 30-40% of people found Melatonin, valerian root and L-tryptophan to be at least “somewhat effective,” and negative effects on sleep were much lower than seen in prescription sleep drugs.
|Supplement||Very effective||Somewhat effective||Not Effective||Made sleep somewhat better||Made sleep much worse|
|Melatonin||68 (11%)||245 (38%)||266||35||32||485|
|Valerian Root||12 (3%)||128 (30%)||234||26||33||672|
|L-tryptophan||15 (6%)||73 (28%||152||9||12||836|
|Kava kava||3 (2%)||26 (17%)||111||5||10||941|
|Chamomile tea||5 (1%)||150 (22%)||504||13||7||454|
Investing in a good sleep mattress, while not cheap, does appear to work. It had one of the highest (16%) “very effective” ratings and easily the highest overall effectiveness rating (very + somewhat effective = 67%) of any approach. Raising the head of the bed had a low very effective rating (5%) but forty-one percent of respondents stated it was at least somewhat effective, and it’s so easy to do it that everyone should probably give it a try. About 25% of people taking the survey had tried a sleep app and few found it very effective, but 31% found it at least somewhat effective. Since a sleep app is a one-time inexpensive purchase, it might be worth giving a try.
|Very effective||Somewhat effective||Not Effective|
|Raising head of bed a couple of inches||37 (5%)||205 (36%)||327||615|
|Investing in a good sleep mattress||146 (16%)||480 (51%)||313||256|
|Using a sleep app to determine what most effects your sleep||13 (6%)||58 (25%)||162||938|
Most people, contrary to some physician’s statements, have actually tried good sleep hygiene practices.
|I have tried the following good sleep hygiene practices||yes|
|Set regular sleep times||1058||134|
|Not napping for long periods in later part of day||1024||171|
|Going to bed only to sleep||897||299|
|Keeping light levels in the bedroom low||1108||90|
|Not watching TV or playing computer games two hours before bedtime||579||614|
|Doing meditation or mindfulness exercises before sleep||681||511|
|Taking a warm bath before sleep||660||529|
As with most other treatments, few (6%) found them to be “very helpful”, a significant percentage (34%) found them to be “somewhat helpful”, while most (60%) found them to be “not that helpful”.
Major Sleep Improvement Has Relatively Modest Effects on Health
About two-thirds of the people taking the survey stated they had “greatly improved” their sleep. The fact that most people still did not feel they had OK or good sleep suggests, however, that some people who had experienced real improvements still had significant sleep issues.
|If you have greatly improved your sleep tell us what effects it had on your health||Great improvement||Moderate improvement||Small improvement|
|Fatigue||92 (12%)||196 (26%)||198||276|
|Pain||63 (8%)||186 (25%)||188||310|
|Clarity of Thought||110 (19%)||203 (35%)||180||266|
|Activity level||76 (10%)||199 (34%)||211||273|
|Overall well-being||119 (16%)||212 (28%)||204||231|
Greatly improving sleep had a moderate to great improvement for about 30-50% of patients with regard to any symptom. Clarity of thought was the symptom most often improved while pain was the least affected.
Most people (50-70%), however, reported either small improvement or no improvement on their symptoms after “greatly improving” their sleep – a surprising finding that underscores the fact that ME/CFS is much more than a sleep disorder.
The modest impact “great” sleep improvement had on fatigue, pain, and other symptoms for many suggests sleep therapies are, like most treatments, band-aids that are helpful but don’t begin to get at the causes of ME/CFS or FM. To really fix the possibly unique set of sleep problems found in ME/CFS and FM, you need to fix ME/CFS or FM.
No home runs were found in the sleep treatments. A small percentage (<10%) of people do experience great relief from drugs, supplements or other means of helping sleep, but when help comes for the vast majority of people it comes in smaller bites. The good news is that from 30-50% of the people trying almost every treatment found that it was at least “somewhat helpful”. The bad news is that from 50-70% of responders found the treatment was not effective or made them worse.
The fact that many factors were at least somewhat effective suggests that putting a variety of factors together – say, good sleep hygiene, a drug or supplement that works, investing in a good mattress, raising the head of the bed – might end up with greatly improved sleep.
Chronic fatigue syndrome and fibromyalgia are clearly, however, much more than about poor sleep. While improving sleep can be helpful, until the core issues of these disorders are addressed, most people with the disorders will have significant troubles with fatigue, pain, as well as other issues.
- Health Rising’s ME/CFS and FM Sleep Resource Center
- Other drugs ME/CFS and FM patients said improved their sleep
- Drug/Supplement combinations ME/CFS and FM patients said improved their sleep
- Dr. Teitelbaum and maximizing the use of sleep drugs
The high-dose (200/mg or more of oral thiamine daily) survey is closing soon – and will be open until Friday, May 7. If you are currently taking high-dose thiamine or have done so in the past, and feel comfortable sharing your experience, please complete the survey here. (Please do not start high-dose thiamine just to participate in the survey.) Find out more about high-dose thiamine in ME/CFS/FM here.
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.