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.

Choice Frequency
Really poor 280 – 27%
Fairly poor 409 – 40%
OK 256- 25%
Pretty good 64 – 6%
Excellent 14 – 1%
doig-hammock

What people with ME/CFS and FM don’t look like after sleep

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”.

Sleep Times

late-night-sleepers

A significant percentage of people stated usually went to sleep after 12 am

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.

Sleep Duration

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
Pain 763 307 114 13
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
Drinking alcohol 146 148 450 410
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.

Pain

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.

sleep and pain

Pain was the most common impediment to sleep cited

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.

Emotional Stress

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.

basset-hound

Stressful emotional events were another big sleep disrupter

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.

Others

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.

Treatment

Sleep Drugs

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.

sleeping woman pills

Most people reported that sleep drugs had moderate, little or no effects on sleep

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

Others

mattress-sleep

The most effective sleep aid reported? A really good mattress

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

Sleep  Hygiene

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.

Conclusions

Teamwork-And-Integration-Conce-53051716

Combining treatments is probably the best approach to getting better sleep

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.

More Resources

 

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