In this video, I will tell you why people with fibromyalgia are tired and sleep poorly. I will also talk about things you can do to improve sleep and reduce fatigue.
My name is Andreas Persson and I am a physiotherapist and specialist in pain and pain rehabilitation.
Over 80% of those with fibromyalgia live with severe fatigue during the day.(1) Fatigue during the day is probably due to two things, inflammation in the central nervous system and poor sleep at night.
We will talk more about poor sleep than inflammation in the central nervous system in this video because we know more about the sleep disorder and there is more to do to counteract it.
But I’m going to start talking about the inflammation in the central nervous system.
When someone is ill, for example with the flu, they are more tired than usual. The fatigue is caused by inflammatory cytokines produced by the immune system as a result of an infection. The inflammatory cytokines are signaling molecules used by the immune system to coordinate various immune responses.(2)
Elevated levels of inflammatory cytokines also occur in fibromyalgia, which is probably a partial cause of the fatigue the affected experience.(3-5) As a side note, it is also the elevated inflammatory cytokines that make people with fibromyalgia experience fever and malaise, often without being able to measure any fever.(2)
At the end of this video, I will talk about some ways to reduce inflammation in the nervous system in fibromyalgia. But first I will tell you about the second cause of fatigue during the day.
Most people with fibromyalgia have a sleep disorder.(6) That poor sleep makes those with the disease tired is not strange, because anyone gets tired of poor sleep. Many with fibromyalgia experience that their sleep is lighter, that they wake up more often and that they do not feel rested when they wake up in the morning.(7)
There are probably three reasons for the poor sleep:
First, insufficient sleep is a risk factor for developing fibromyalgia, which in itself means that those with fibromyalgia are more likely to have a sleep disorder.(6)
The second reason is that the inflammation in the central nervous system impairs sleep.(8)
The third reason is that the pain interferes with the sleep.(9,10)
In addition to the fact that those with fibromyalgia wake up more times during the night, researchers have seen that they have less deep sleep compared to pain-free people.(6) When scientists disturb the deep sleep of normally pain-free people, the pain inhibitory function in the downward pain-modulating system deteriorates.(6)
Impaired analgesic function in the pain modulating system is one of the causes of fibromyalgia. There is a clear link between poor sleep and more pain in the disease. When a person with fibromyalgia has slept worse one night, he or she gets more pain the next day.(7)
The fact that poor sleep increases pain and that pain impairs sleep can be seen as a negative spiral that can be a strong contributor to the fibromyalgia not going away. If you improve your sleep, you can climb up the spiral and reduce the fibromyalgia symptoms instead of falling down in it.(11)
Before we move on to how to climb up the spiral, I will tell you about some other negative effects that poor sleep quality leads to.
In addition to increased pain and fatigue during the day, poor sleep quality
increases the risk of depression (12) and anxiety (13), which is more common in those with fibromyalgia.(14)
Given that insufficient sleep also negatively affects concentration and memory in anyone (15) and these factors are impaired in those with fibromyalgia (16, 17), the poor quality of sleep is probably at least a partial cause of the cognitive impairments that those affected experience.
In summary, poor sleep increases the pain, and increased pain results in worse sleep which can be illustrated as a negative spiral. Insufficient sleep is partly involved in fatigue, depression, anxiety, impaired memory, and ability to concentrate in fibromyalgia. This may sound quite depressing, but there is hope.
It is possible to improve sleep in fibromyalgia and with improved sleep, you can also reduce the other symptoms, which means that instead of going down the spiral, you climb up through it.
Improved sleep provides reduced pain that provides improved sleep and so on. And by improving sleep, you can also improve the other symptoms. And this naturally leads to the question, how do you improve sleep in fibromyalgia?
Since the pain and inflammation in the central nervous system partly drive the poor sleep, it is easy to believe that it cannot be changed. But there are many ways to improve sleep. Some things require only a small change in daily routines while others are harder to do.
Many of the changes we are going to talk about can be part of a treatment called cognitive behavioral therapy for insomnia or CBT-I. If you think that you can not perform the measures on your own but need support in the process, I recommend that you contact a clinic or therapist who can offer CBT-I.
I am now going to list several things you can do to improve your sleep. To write things down and check them off a list increases the chance that the thing gets done for many people including myself. The list is available to print or copy to your computer, phone, or tablet on my website. The link is in the description. Maybe you already do many of these and maybe you do not want to do more of them because of your family life or your work.
My advice is to check all the things you do and start adding additional things to improve your sleep. The more things you do, the better the conditions are for good sleep. The first thing I will talk about is caffeine intake.
1. Do not drink something with caffeine after 12 am.
Caffeine has a half-life of 6 hours, which means that half of the caffeine you got when you drank your coffee, tea, or energy drink remains in the body after 6 hours and a quarter after 12 hours.
Adenosine is a molecule in the brain that increases sleep drive, which is crucial for the ability to fall asleep. The longer you are awake the more adenosine builds up in the brain. Caffeine blocks the adenosine receptors so the molecule loses its sleep-inducing effect.(15)
2. Do not sleep during the day.
In addition to adenosine receptors being blocked by caffeine, adenosine levels decrease significantly if you sleep during the day. This means a reduced sleep drive when you go to bed at night.(15)
It is easy to think that after a bad night’s sleep you have to sleep for a while during the day to be able to function, but it easily becomes a negative pattern where the nap during the day gives poor sleep the next night and the bad sleep leads to wanting to take a nap the day after, and so on.
To get better sleep at night, you need to break this pattern and avoid sleeping during the day. If you feel that you need recovery during the day to get more energy, it is better to do other activities that provide rest and energy. For example, reading, meditating, watching a movie, taking a walk, or talking to a friend.
3. Do something outdoors for at least 30 minutes early in the day.
In addition to sleep drive, the ability to sleep is determined by the wake drive. Another name for the wake drive is the circadian rhythm. Being out and getting daylight early in the day gives the brain a strong signal that it is day and that it is now that you should be alert and that the time you should be tired and asleep is at night.(15)
The distance between the sleep drive curve and the wake drive curve is important for both the ability to sleep at night and being alert during the day. The greater the distance with high sleep drive and low wake drive the easier it is to sleep. And the smaller the distance the more alert you are.(15)
Another thing that can help regulate the wakefulness curve or the circadian rhythm is the environment in the bedroom at night.
4. Quiet, undisturbed, dark, and cool in the bedroom when you sleep.
It must be quiet when sleeping. If it is not possible to keep it completely quiet in the bedroom, earplugs can help.
If you have difficulty sleeping and have a partner, child, or pet that bothers you at night, it may be worthwhile to sleep on your own.
Just as it is good to get daylight in the morning for the circadian rhythm of the brain, it must be dark at night. If it is not possible to get the bedroom completely dark, an eye mask can help.
The body is set at different temperatures in different parts of the day. The body temperature is the coldest at night and the warmest during the day. The coldest and warmest temperature differs by about .5 Fahrenheit or .3 degrees Celsius.(18)
It has been shown that a relatively low temperature in the bedroom makes it easier to sleep. Usually, around 64 degrees Fahrenheit or 18 degrees Celsius works well, but you may need to experiment to find the right temperature.
5. Take a hot shower or bath before going to bed.
Another way to help the body lower the body temperature at night is to take a hot shower or a hot bath in the evening.
It may seem contradictory because you get warmer for the moment, but the warm water increases the blood flow in the skin, which causes the body to cool down more than usual a few hours later when you go to sleep or have fallen asleep. This has also been shown to improve sleep.(15)
6. Exercise or do physical activities.
In addition to the fact that properly adapted physical exercise is one of the things that has the best effect against the symptoms of fibromyalgia, it can also improve sleep.
It is better to train early in the day as this also helps with the setting of the circadian rhythm. If you train too late in the evening, it can be difficult to fall asleep.(15)
7. Manage high levels of stress and anxiety.
If you live with a lot of stress and anxiety, managing that can improve sleep. There are many different things to do to deal with stress and anxiety and I will not go into that in this video.
I mentioned a few things in the video about how fibromyalgia develops over time and how 1/4 can be cured but will probably make more comprehensive videos about managing stress and anxiety in the future.
8. Adequate amount of stressful activities.
Some people with chronic pain who are on sick leave or have retired have reduced their activities significantly to reduce pain and stress, often to a level where they do very little stressful or stimulating activities during the day.
Stress is not only negative but it often makes us more alert. It is important to get out and do something at least moderately stressful every day, preferably in the morning because it creates an increased drive to sleep at night and because it can create more energy for the day.
Other people live with a high level of stress throughout the day and for them, sleep can be helped by reducing the stressful activities. Especially in the evening the hours before they plan to go to bed
9. Teach the brain to associate the bed and bedroom with sleeping at night.
As you may have heard, there is a phenomenon called classical conditioning. This means that the brain learns to associate different stimuli with different outcomes and prepares the body for what is going to happen.
In the classic experiments by Ivan Pavlov, he saw that dogs started salivating when they saw food, which is the body’s preparation to take care of the food. Pavlov made the dogs hear a certain sound in connection with receiving food. After a while, the dogs did not have to see the food to start salivating, it was enough to hear the sound. A conditioned reflex was created.
But why am I talking about this now? In the same way that dogs’ bodies and brains can be conditioned to start secreting saliva at a certain sound, human bodies and brains can be conditioned to sleep or to be awake as a result of certain stimuli.
One such stimulus can be the bed. If the bed is associated with sleeping at night, the probability increases that the brain and body initiate processes so that you can sleep when you go to bed. If you do a lot of other things in bed, such as watching TV or working, the bed may act as a stimulus to prepare the body and brain to be awake and do those activities.
If you have had problems falling asleep for a long time when you go to bed, or after waking up at night, the bed can instead of being associated with sleeping be associated with lying awake and trying to sleep.
A good rule that usually helps, is that if you do not fall asleep within 20 minutes, you should get up and do something else until you become sleepy. Then you can go to bed and make another attempt to fall asleep. And if you do not fall asleep in 20 minutes, you get up again and do the same thing.
What often prevents people from doing this, including me sometimes, is that they think that if I just stay in bed a little longer, I might fall asleep, even if you have already been in bed trying to fall asleep for an hour. And sometimes it can be the case that you fall asleep if you stay in bed for a few more minutes, even if you have been lying down and trying for an hour.
But it is not a good way to handle it in the long run because the bedroom and laying in bed at night don’t get associated with sleeping but with lying awake and trying to sleep.
In the long run, the strategy to get up if you have not fallen asleep within 20 minutes, will make you fall asleep easier both when going to bed in the evening and after waking up at night. Another thing that helps to associate the bed and bedroom with sleep is sleep restriction therapy.
10. Sleep restriction therapy.
Sleep restriction therapy can be a powerful tool for improving sleep in fibromyalgia. But it is also quite hard, especially the first 4-5 days. I recommend that you do what you can with the other mentioned measures first. To first remove all sleep during the day is crucial for sleep restriction therapy to work.
Many with fibromyalgia who have sleep problems lie in bed and sleep or try to fall asleep for up to 8-9 hours a night. Of that time, they may only sleep 5-6 hours. One of the reasons why many spend so much time in bed trying to sleep is the belief that everyone should sleep for 8 hours a night.
However, the human need for sleep and the brain’s ability to create sleep changes with age. A child at the age of 6 may sleep 11 hours a night while a 15-year-old sleeps 9 hours, a 40-year-old 7 hours, and a 60-year-old 6 hours.
The brain’s ability to produce sleep decreases as we get older and it often does not contribute to anything positive to spend more time in bed than the time that the brain can produce sleep.
To know at what level you should start the sleep restriction therapy, write down how long you sleep at night for 5-7 days. Write down when you go to bed and when you get up and subtract the approximate time you are awake at night. Calculate the average time you sleep each night. This is how much time you should spend in bed during the first week of sleep restriction.
For example, if you go to bed at 11 pm and get up at 7 am but only sleep 6 of the 8 hours you lie in bed, you should only spend 6 hours in bed during the first week of sleep restriction. For example. From 12 pm – 6 am. You must go to bed and get up at the same times every day.
If you on average only sleep less than 5 hours a night, you should still spend 5 hours in bed per night as this is the lowest level you should go down to.
If after a week you have started to sleep much more coherently and are less awake than before, you can try to add half an hour of sleep and if it works well, you can add another half hour after a few weeks. But if it leads to poorer sleep quality, you can go back again and subtract the time in bed.
Sleep restriction therapy is usually toughest the first 4-5 days. You often sleep as badly as before but for a shorter time, which means that you will be even more tired during the days. But if you manage to fight your way through this, not sleep during the day and keep the time in bed at night, then you usually get a much better quality of sleep and become more alert during the day.
On the list of the various sleep-enhancing actions, there is also a sleep diary with instructions for sleep restriction therapy. The link is in the description.
As I said at the beginning of the video, fatigue during the day is caused both by poor sleep and by increased inflammation in the central nervous system. So is there anything you can do about the inflammation?
The prominent Belgian pain researcher Jo Nijs and colleagues list three things that can reduce inflammation in the central nervous system in an article from 2017. Reduced stress, adapted physical exercise, and improved sleep.(5)
So by improving sleep, you can reduce fatigue directly, but also indirectly because sleep can reduce inflammation in the nervous system. And both physical exercise and reduced stress can reduce fatigue by improving sleep and by reducing inflammation in the nervous system.
If you want to know more about adapted physical exercise for fibromyalgia check out my videos nine rules for exercise with fibromyalgia, fibromyalgia walking program, and fibromyalgia exercises: a program with scaled exercises.
So by doing the measures I have talked about, instead of going down in a negative spiral of pain, bad sleep, and fatigue, you can climb a positive spiral with improved sleep, reduced pain, and fatigue and also reduce other symptoms such as anxiety, depression as well as concentration and memory difficulties.
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