Fibromyalgia and sleep disorders
The facts and moral issue problems
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A full 80% of people with Fibromyalgia, have a sleep deprivation disorder, of the delta sleep, or "deep sleep" phase in particular. It's labeled in the official definitions as "un-refreshing" sleep, which doesn't even begin to cover what it means in terms of life effects. An added and quite unnecessary complication to this already difficult problem, is the tendency of others to attach some kind of "moral" value to sleep patterns.

But first, a few facts on the concept.

What happens in normal sleep patterns ?

Stage 1: is a transition state. In this stage, the eyes move slowly and muscle activity slows down. This is a light sleep where you can be easily awakened.

In Stage 2: this is where eye movement stops and the brain waves become slower, with just an occasional burst of rapid brain waves. At this point, the body is preparing to enter deep sleep.

Stage 3:
At this point, there are extremely slow brain waves called delta waves are interspersed with smaller, faster waves called theta waves. The sleeper is far more difficult to awaken at this point.

Stage 4:
Deepest of the four stages. No eye movement or muscle activity occurs during deep sleep. During this stage, the brain produces more delta waves than theta waves. This is the major point the body does regeneration.

Non-REM Sleep:
The period of non-REM sleep (NREM) is comprised of Stages 1 though 4 and lasts from 90-130 minutes at a time.

Stage 5: (REM)
"In the REM period (Rapid Eye Movement), breathing becomes more rapid, irregular and shallow, eyes move rapidly and limb muscles are temporarily paralyzed. It is generally thought that REM-associated muscle paralysis is meant to keep the body from acting out the dreams that occur during this intensely cerebral stage. Heartbeat may increase and muscles may experience occasional muscular twitches. REM usually takes place 90 minutes after falling asleep. The first period of REM typically lasts 10 minutes, with each recurring REM stage lengthening, and the final one lasting an hour. Most vivid dreaming happens during REM."

Sleep Cycle:
The five stages of sleep, occur in cycles. The first cycle, which ends after the first REM stage, usually lasts 100 minutes. Each subsequent cycle lasts longer, as its respective REM stage extends. A person may complete five cycles in a typical nights sleep.

What happens in a person with FM ?

"Sleep electroencephalograms of patients with fibromyalgia typically show disturbance of non-rapid eye movement (REM) sleep by intrusions of alpha waves and infrequent progression to Stage 3 and Stage 4 sleep. "John D. Zoidis, MD

See more details below, under Sleep disorders


We sleep the sleep of the aged:

"When people age, the amount of time they spend in each of these sleep stages changes. As people reach middle age, they typically begin to spend less time in the stages of deep sleep. The effects of aging cause people to wake up more often. By 60 or 70 years old, sleep gets even shallower and some people may not even experience any delta sleep" Sleep.org

Sound familiar ? This is exactly what is happening to us with FM, only it's happening a great deal younger than 60 or 70ish.


When you are more likely to wake:

Notice, that you cycle though all 4 of the first 4 stages of sleep over and over, which includes stage one, the point where we are easy to awaken. Since we tend to skip stage 4, and often therefore, miss most of stage 5, we can cycle back to stage one, much more often than normal. ( Sleep studies indicate this stage is reached anywhere from 3 to 5 times the normal rate, in a person with FM ) Which, it is reasoned, is the point where you are much more likely to be awakened by any stimulus, be it pain from the body, to the neighbors dog barking, etc. At stage one, it doesn't take much.

Lack of REM sleep and dreaming:

"Experiments have shown that if sleepers are awakened as soon as REM starts, they enter REM sleep more rapidly the next time, and their REM is more intense. If the deprivation continues, they go into REM as soon as they fall asleep. It becomes impossible to deprive people of REM sleep without keeping them awake all the time. REM-deprived people can go into REM quickly in shorter naps." Holistic care

This effect, is typically self reported by many people with FM, that to nap means to dream, intensely. Which, given the above effect due to sleep deprivation, would make perfect sense, as they are by passing the deep stages of sleep entirely, and going directly into an intense REM sleep state, when they nap. With one exception ....

Eating and sleepiness:

This is normal, as this sleepiness tends to happen to everyone. When we eat the body produces a rise in our blood sugar and a surge in insulin production. This chemical activity sends tryptophan to the brain where it becomes serotonin and serotonin signals the body to rest, so that it can digest the food. Also, blood is diverted from the brain in order to effect this digestion faster, so we are less alert as well.

Many of us with a sleep disorder however, find that despite our difficulty in sleeping at night, we will quite often drop off for an hour or more "siesta" after eating. This onset of sleep, unlike the deliberate nap as above, which is generally planned ... can come on quite suddenly, to the point where we almost suspect a narcoleptic state. However, this is very rarely found to be the case. Another suspect is Diabetes, as sudden sleep states are common if your blood sugar bottoms out. Hypoglycemia is another, which is also most often ruled out.

However, this effect can happen even if our blood sugar, is perfectly normal. It is not unusual, as many report, to find yourself, sitting in front of your TV or computer ( or my most common, sitting there with a book in my hand, lights burning, glasses still on my face ), and hours have passed, of which you are totally unaware, as you have been in a deep state of sleep. It feels like you just closed your eyes and blinked, but the next thing you know, from a few minutes, to as much as several hours have passed. It often makes many suspect a peti mal, or epileptic state, which is also ruled out for most people.

A lot of the more common medications we are given can have this effect was well, but over all, the most reasonable explanation is you sleep, because the human body is intended to rest after meals. And in your case, you are so short on sleep, that you are much more likely to actually go to sleep after meals, rather than just feel sleepy. So rather than fight this tendency, my personal recommendation is ? If it is at all possible to let yourself sleep, do so. Expect it, plan for it, and even encourage it, literally take advantage of it. As it might well be the most normal and restful sleep, your liable to get.


Effects of disrupted sleep:

"Somatomedin C is a growth hormone secreted by the kidney and is known to be important to maintaining good muscle and other soft tissue health. Its release stimulates the liver to release insulin-like growth factor (IGF1) and in combination these neurochemicals allow the body to repair the muscles during the night while resting" Low growth hormone levels are typically seen in persons with FM Role of Sleep Disturbance

"According to a 2000 study published in the British scientific journal, researchers in Australia and New Zealand reported that sleep deprivation can have some of the same hazardous effects as being drunk.( The study was based on accident causes ) In addition, as a result of continuous muscular activity without proper rest time, effects such as cramping are much more frequent in sleep-deprived individuals. Extreme cases of sleep deprivation have been reported to be associated with hernias, muscle fascia tears, and other such problems commonly associated with physical overexertion. Beyond impaired motor skills, people who get too little sleep may have higher levels of stress, anxiety and depression" Study

Effects of sleep deprivation

  • aching muscles
  • blurred vision
  • depression
  • daytime drowsiness
  • decreased mental activity and concentration
  • weakened immune system
  • dizziness
  • fainting
  • confusion
  • hand tremors
  • headache
  • hyperactivity
  • hypertension
  • irritability
  • lucid dreaming (once sleep resumes)
  • memory lapses or loss Article
  • nausea
  • slowed reaction time
  • and many more...
And in extreme cases

Hallucinations (visual and auditory) and or death.

Now, I find it surprising that the effects of sleep deprivation are well known, but almost no one seems to relate them to the most common signs in FM. Nearly everyone of them, from short term memory issues, pain, etc., can almost all be found, in persons who are sleep deprived. In fact they have found, that if you deprive a healthy person of deep sleep for just a few days, they start to show FM like signs.

It begs the question of, is FM a matter of you get little deep sleep, because you have FM, or you have FM, because of how little deep sleep you get ? No one has been able to entirely answer that one yet, but some are looking into it.


Sleep disorders: In order of prevalence

Insomnia:
"Trouble falling asleep or staying asleep on a regular basis with no apparent cause; un-refreshing sleep despite the ample opportunity to sleep" Which doesn't take the concept nearly far enough. As it fails to mention the fact that a persons level of tiredness has nothing whatsoever to do with their ability to get to sleep or stay asleep. It is mistakenly assumed by many, that if you are tired enough, you will sleep. This is not the case for someone with insomnia. Chronic insomnia in particular.

Alpha EEG anomalies:
Which are sudden bursts of "awake" brain wave activity, happening in the brain of someone whose is supposed to be in deep stage 4 sleep. This is easily measured in sleep studies, and is considered one the leading problems, if not the cause of FM. The reason being, if you deprive even normal subjects of deep sleep, they will in short order, develop FM like symptoms. "... it is clear that fibromyalgia patients do not attain stage 4 sleep. "And it doesn't matter how physically fit they are," he added. "Specific stage 4 sleep deprivation induced fibromyalgia symptoms through alpha wave intrusion into delta wave sleep." Harvey Modolfsky, MD of the University of Toronto and Journal of Sleep Research

Sleep Apnea:
Sleep Apnea is a disorder that causes momentary stoppages in breathing while your sleeping. In effect, the brain forgets to tell the body to breathe. In self defense, the body will wake you, to force you take over manual control of this and breathe on purpose. Some 80% of persons with FM, may have this problem. This can be a serious and even life threatening event.

Bruxism: 
Clenching and grinding of the teeth while you sleep. Most mistakenly consider this event, to be a stress reaction, since emotional distress is often the reason for such action, if we grind our teeth while we are awake. However, no studies have shown that those with this disorder, as a nocturnal event, are under any major emotional stress ... physical stress is quite another matter however, as pain in another part of your body can make you clench and grind your teeth while you sleep.

Your bite is up to 6 times more powerful in your sleep, than awake, and you can literally damage the jaw and facial bones, muscles and even break teeth with this disorder. Further, " Teeth clenching is the default mechanism of the brain. When it doesn't know what to do as a response to mixed or erratic signals, it clenches the jaw " Devin Starlanyl, MD 75% of people with fibromyalgia also have Temporomandibular disorders or TMJ.

Restless Leg Syndrome (RLS)
Restless legs syndrome (RLS) is a neurological disorder... RLS causes unpleasant and often painful sensations in the legs that force the body to move the legs, to reduce the sensation. "It is thought that somewhere between 20% and 40% of fibromyalgia sufferers also have RLS." People with anemia may develop RLS. Chronic diseases such as kidney failure, diabetes, Parkinson's disease and peripheral neuropathy, are associated with RLS. RLS can also occur when the person is awake.

Periodic Limb Movement Disorder (PLMD) nocturnal myoclonus
Periodic limb movement disorder (PLMD) is repetitive cramping or jerking of the legs/arms during sleep, that the sleeper is totally unaware of, that disrupt sleep. It is the only movement disorder that occurs only during sleep.

Of importance to note, "PLMD may be induced by medications, most notably, antidepressants" Sleep Disorders. Given how often antidepressants are given to people with FM, for the express purpose of helping them sleep, this fact would make the whole idea of taking them, very counter productive for some people !


What is typically suggested for insomnia:
  • Maintain a regular sleep schedule, particularly a strict arising time every morning, regardless of the amount of sleep the night before
  • Don't eat, talk on the phone or watch TV while you're in bed
  • Do the same thing every night before going to sleep
  • Avoid or limit your use of caffeine (coffee, tea, sodas, chocolate), decongestants, alcohol and tobacco
  • Keep your room temperature between 60 and 70 degrees
  • Exercise more often
  • Learn to reduce or manage the stress in your life
  • Don't nap during the day
Now, for someone with the occasional bout of insomnia or jet lag who, the rest of the time, has a normal sleep capacity, all of the above might be perfectly helpful to get their cicada rhythms ( sleep patterns ) back in order.

However, here is what these things can mean, to someone with FM

Maintain a regular sleep schedule ... means going to bed at 10 PM and sitting there in a darkened room, wide awake. Until you finally drop off to sleep, generally at the same time as you would any other night, which might well be around dawn. Then getting up at 6 or 7 am, which means you have had maybe 2-3 hours of sleep, and do it day after day. Until you are stumbling around like a zombie, as you are now in near total sleep deprivation. It does not matter how long you keep this up, the sleep pattern does not normalize in those of us with FM.

Don't eat, talk on the phone or watch TV, read, while you're in bed ... means, while your lying there, you are also in more pain, as you are given no access to any kind of distraction and just have to sit there, with nothing else to focus on and suffer. It feels like your being punished for something !

Do the same thing every night before going to sleep ... meaning a bedtime ritual, which most of us do ... it makes no difference whatsoever in our sleep quality however.

Avoid or limit your use of caffeine (coffee, tea, sodas, chocolate), decongestants, alcohol and tobacco. Which many FMers have done to the point of excluding them all from their diet, entirely ... effects on their sleep ? For most, it's little to none. The increase in their daytime fatigue however, can be considerable as a result.

Furthermore, over 80% of the USA, is considered to use caffeine to, "excess" however, only 20% of the population is classed as having a sleep disorder. ( Of which we with FM, count as only a small fraction of that segment, so the stress on caffeine as reason for sleep deprivation, sounds good on paper, but it doesn't hold up to the real live numbers. )

Keep your room temperature between 60 and 70 degrees ... which is too cold for most of us and just increases pain, which will keep us awake.

Exercise more often... which has already been proven, repeatedly, that exercise does not have the same effects for people with FM, as it does for non FMers with regard to sleep. In fact, the opposite is generally the case, in that we will be more wakeful.

Learn to reduce or manage the stress in your life ( feasible here, but given how stressful FM is on the body, a difficulty at best )

Don't nap during the day ... means that no matter if you only got 4 hours of broken sleep last night, you are not supposed to drop off during the day ? This idea just increases an already serious sleep debt and increases fatigue. Such advice is, lets blunt here... absolutely ludicrous, as that nap might be the only real sleep we get for the day.

The no nap idea, is for people who have normal chemistry and otherwise normal sleep patterns, this is NOT us. As plenty of sleep studies have well proven. So telling us not to nap when we get the chance, is not even remotely reasonable, as further depriving ourselves of sleep and forcing ourselves to stay awake, is not going to "normalize" our sleep patterns.

Over all, the effects if we follow such a course is ? For most of us, it means a perpetual flare and serious increase in pain, fatigue and disability, for the entire time we are doing these "recommendations." During which time, we have gotten no better sleep. Believe me, if all this worked for us, we would follow it like it was a religion. But since our body's neurochemistry for sleep is so out of whack, such recommendations are worse than useless, they are generally detrimental.

The morality of sleep:

Pardon me, while I get up on a soap box for a moment.

Now, as if the fact we are almost always sleep deprived is not enough and suffer the physical effects thereby, there is, in most of the world, a very strong social and moral value, attached to sleep. Which is mostly negative, that is often applied to those of us with FM on a regular basis.

Most of the world operates in the daylight hours, which means most people are normally up and awake, when the sun rises. The world starts up, our schools, our jobs, when the stores are open etc. all operate on the premise of "normal" waking hours. Which for most people is fine. And if were just a matter of fitting open and active times for our businesses etc., to the majority, this would be no problem, as it would be perfectly reasonable. But in comes the second effect, moral values.

We have long standing social mores that say, almost without fail, that is there something moral or virtuous in getting up in the AM, at a certain hour. And by extenuation, that there is something immoral about getting up late. Notice how we even define it as "late."

Now, back when everybody lived on a farm, the old saying of "early to bed, and early to rise" made perfect sense, to someone who was up before dawn to tend their animals. And they could only get any major work done, by the suns light. So "wasting" any of it meant that something was going undone, ergo, you were "irresponsible."

Most of us, wouldn't even know how to live on a farm these days. Our lives are run by a time piece on the wall, our jobs spent inside where electric lights are the rule. Therefore, where is the supposed "value" now in being an early riser ? Answer, there isn't one, for any of us. It is a habit, a habit ingrained from times past that, for most of us no longer applies.

Yet, we lived those times for so long that the concept of sleeping in "late" is seen as "self indulgent" at best and "lazy" or "shiftless" at worst to the social mind. Even more so, sleeping in "late" is often thought of as "escapist" or "avoiding" responsibility. ( Which is an insidious accusation, as in people with normal sleep capacity, it might even be true. However it's being applied to people who have very good reason to sleep "late.") 

This same labeling effect is seen by night workers by the way, who are day sleepers, due to their working hours, who report social problems on account of it. "Excessive" sleep, is also part of the list, as a red flag for many mental disorders, which is all too often applied to us, in error.

So, understand, it is not just getting to sleep that is our problem. We are being asked to do so in a particular manner ( meaning getting to sleep, when "everybody" else does ), and we are being asked to "conform" to a social model that has outlived its usefulness, but hangs in there like a burr on the dogs tail to the public mind. This mind includes, our families, our friends, our doctors and so forth.

I mean, if we manage to get to sleep at dawn, and sleep until noon, getting about 6 hours of sleep for the "night" un-refreshing though it is, does it really matter what part of the 24 hour day we got it in ?

Answer, no, it doesn't, other than in the minds of those who see us rising at such an hour, with disapproval and often ... outright condemnation. Or, even worse, if we rise and say: get the family off to school, or work and horrors, go back to bed or get "caught" napping during the day ! About the only people who can do this, without outright social condemnation, are the very young and the very old, as they are expected to nap during the day. Anyone else? It is considered socially "unacceptable" with all sorts of negative moral implications attached.

So we fight a second battle nearly everyday of our lives with a good portion of the world, one of a challenge to our "moral virtue", simply because we have a sleep disorder.