Why people get fibromyalgia!

You can find the video after the text

In this video, I will tell you what causes fibromyalgia.

My name is Andreas Persson and I am a physiotherapist and specialist in pain and pain rehabilitation.

I often hear and read that we do not know the cause of fibromyalgia. When someone says this, it shows that they are not familiar with the research. There is good evidence for several different causes of fibromyalgia. However, there is a certain truth in the statement and that is that we do not know everything about the causes. But we know quite a lot.

Before we start talking about the causes of fibromyalgia, it is important to explain how a cause will be defined. There are causes for everything that happens in the universe, and each cause in turn has one or more other causes.

If we take an example to illustrate what I mean. Stina has burned her skin. What are the causes of why Stina burned her skin?

Three direct causes are: Stina worked in the garden for two hours in the middle of the day wearing only a bikini; yesterday was a sunny summer day where Stina lives and that Stina’s skin was sensitive enough so that two hours in the sun was enough for her to get burned.

But what were the causes for that? Now there are many different causes. The causes why Stina worked in the garden for two hours in the middle of the day wearing only a bikini, the causes why the Sun shone on Stina when she worked in the garden, and the causes why it was enough with two hours for Stina to burn her skin.

Let’s go one step further to explain the causes for one of these causes, that it was enough to spend two hours in the sun wearing a bikini for Stina to burn herself. There were at least two causes for that. One cause was that Stina had not been out in the sun much in the spring and earlier in the summer so that her skin has been able to adapt. 

Another cause was that Stina has very light skin. She thus has very little basic pigment in her skin. That Stina has not exposed her skin to the sun recently and that she does not have much basic pigment also has causes, causes that also have causes.

In this way, you can go on and look at causes that have causes that have causes almost indefinitely. Thus, there is always at least one reason why something happens and one cause is always caused by other causes that are caused by other causes and so it continues until you get to the big bang – that is the creation of the universe which was the basic cause of everything that happened after that. But maybe there were also one or more causes for the big bang?

Let’s return to fibromyalgia. I can start by stating that fibromyalgia has not one cause but several and that the causes also have causes and that also for fibromyalgia one can say that the first cause was a big bang if it was not the case that even big bang had causes.

The most direct reason for having fibromyalgia is that you have the symptoms that define fibromyalgia. I have included some of the most common symptoms in the image.(1)

Even if we do not know exactly what the causal relationships look like, some links are likely.

A partial cause of pain, fatigue, and concentration- and memory difficulties is sleep disturbance, that is poor and ineffective sleep. Sleep disturbance can also in itself be seen as a symptom of fibromyalgia.

In previous videos also have talked about some of the causes of pain in fibromyalgia. Watch the three videos that start with the one called ”Why it hurts in fibromyalgia”.(2) Some of the reasons were: changes in the downward pain modulating system, increased levels of inflammatory cytokines, and increased ability to make the pain nerves in the spinal cord more sensitive, so-called. Central sensitization.(3) These causes, which also have causes, can be placed in the causal chains of fibromyalgia, which means they partly explain why you get fibromyalgia.

Another video that has centered on the causes of fibromyalgia has been the one titled: Is Fibromyalgia Hereditary. The video is about how much of the risk of developing fibromyalgia is due to genes and how the risk is affected by having a close relative with the disease.(4) 

We do not know all the causes in the causal chains of fibromyalgia, but in this video, I will talk more about what we know.

Scientists have identified several risk factors. You can see them here in the green boxes, as links in the causal chains. Of course, the risk factors also have causes that have causes, but they have been highlighted because they are clear, often easily identifiable, and studied. 

They are probably also crucial for whether a person will get fibromyalgia or not. If you do not have one or more of the risk factors, you will probably not get fibromyalgia.

Here I want to use another illustration. If we imagine the risk factors as boxes and getting fibromyalgia as a line or a bar, it is probably easier to reach the bar, that is, get fibromyalgia if you have more risk factors. It is also likely that a risk factor may be more or less strong, which can be illustrated as a higher or lower box. 

The height of the bar can vary to some extent depending on where you draw the line for whether a person has fibromyalgia or not, that is, what diagnostic criteria are used.

The criteria from 1990 probably represent a higher bar and the new criteria that are now recommended from 2016 a slightly lower bar.(5,6) But what’s in the boxes?

Injury

The first risk factor for fibromyalgia is injury to the body. There is evidence that a physical injury can trigger or at least be a partial cause of fibromyalgia.(7-11) And there is also some evidence that the severity of the injury affects the size of the risk.(12) 

You can injure yourself thru an accident and you can even see a surgery as a type of injury. Damage can also occur for other reasons. Another variant of injury occurs when aged joints are overloaded. This is usually called osteoarthritis. Because cartilage and ligaments in the joints have aged, it does not require much strain to become overloaded.

Injury can occur as a result of the immune system attacking various tissues in the body as well. For example, this occurs in rheumatic diseases such as rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis. People with any of these diseases are about 10 times more likely to develop fibromyalgia.(13,14) 

As I said, the injury can be more or less extensive, which affects the risk of fibromyalgia. The risk increases further if you get several injuries.

Insufficient sleep

The next risk factor, or box, is insufficient sleep.

If any healthy person stays awake for 24 hours, the person develops increased sensitivity to pain in the body as in fibromyalgia.(15,16) The increased sensitivity goes away when the person is allowed to sleep again.

Most people with fibromyalgia have a sleep disorder. The pain likely leads to poorer sleep and the poorer sleep also leads to more pain. There is a link between pain intensity and sleep that shows that those who have worse sleep have more pain.(17)

In fibromyalgia, it has been shown that the affected have disturbed deep sleep. When the deep sleep gets disturbed in healthy normal pain-free people the pain-relieving function in the downward pain-modulating system deteriorates.(18)

In a Norwegian study that followed 12350 women who initially did not have pain, 327 of them developed fibromyalgia over ten years. A clear connection showed that those who had poor sleep quality had an increased risk of developing fibromyalgia. It was even possible to see that the risk was dose-dependent, that is the worse the quality of sleep was, the higher the risk of developing fibromyalgia.(19)

This means that just as a bigger injury increases the risk of fibromyalgia more, more severely disturbed sleep increases the risk more.

Similar results were shown in a British study where people who did not feel rested after sleep had an increased risk of developing widespread pain.(20)

The causes of insufficient sleep can be many. For example, shift work, poor sleep hygiene, genetics, and stress. Stress can also be seen as an independent risk factor, or causal box, for developing fibromyalgia.

Stress

High levels of mental stress combined with insufficient recovery are a risk factor for developing fibromyalgia.

Stress was the reaction that was created in the body and brain when our ancestors were chased by saber-toothed tigers. The function of stress is for us to survive. The same reactions that were created in our ancestors when they were chased by something that tried to eat them are created in us, albeit to a lesser extent, when we do different activities in our daily lives.

Today we can experience high stress levels in situations such as the boss told us that we do not do enough at work or when we talk to dissatisfied customers or when the photocopier does not work when it is crucial to complete a task we are behind on.

Stress is thus the body’s and brain’s reactions to a situation. A situation that creates stress is called a stressor. Different situations can create different amounts of stress in different people. In one person, working in the garden can be among the most pleasant and least stressful situations there is while the same activity can be very stressful for a person who has arachnophobia.

In addition to the fact that specific situations can trigger different amounts of stress in people, people can be generally more or less sensitive to stressors, something that can depend on both genes and the experiences the person has had earlier in life.(21-23)

Everyone experiences more or less stress in different situations. Stressing your body and brain to some degree is necessary to do anything in life at all. But to have good health, you need to have sufficient recovery and rest between stressful situations.

There is extensive evidence that high stress without adequate recovery increases the risk of developing fibromyalgia. An example of a stress-related risk factor for fibromyalgia is deploying as a soldier to war.(13)

There is also an increased risk that people who have experienced stressful life events in childhood develop fibromyalgia.(21-25) Probably partly because they have become more sensitive to stressors as a result of the events.

Several studies show that those who develop stress-related fatigue syndrome (what is usually referred to as being burned out) have a significantly increased risk of getting pain in the body.(26,27)

Post-traumatic stress disorder or PTSD is a condition in which the affected has been exposed to frightening events which then results in a continuing elevated stress level which often involves re-experiencing the events in the form of flashbacks or nightmares. People who are more sensitive to stressors have an increased risk of developing PTSD as a result of a frightening event.(28)

One study showed that as many as 45% of those with fibromyalgia had PTSD, while in the control group the incidence was only 3%.(28) This makes it easy to believe that PTSD is a strong risk factor for fibromyalgia. But the study also showed that as many as 29.5% got PTSD after they had fibromyalgia. This suggests that people who have an increased sensitivity to stressors have an increased risk of both fibromyalgia and PTSD.(28)

Due to the length of this video, I will not go much deeper into how stress increases the risk of fibromyalgia, although it may be worth mentioning that there is some evidence that stress can cause elevated levels of inflammatory cytokines, which in turn can make the pain system more sensitive.(29-31)

Infection

A much rarer but still occurring risk factor for fibromyalgia is infection.(32)

Most people who have had a flu infection have, in addition to symptoms such as fever, fatigue, and cough, experienced headaches, pain, and tenderness in large parts of the body. 

This is caused both by inflammatory cytokines that are released by activated immune cells in the body, which makes the nerves in the pain system more sensitive and by the cytokines leading to increased production of prostaglandins which make pain receptors in the body more sensitive.(33)

For virtually everyone who gets a flu infection, the pain disappears once the infection has disappeared, but it shows us that infection can lead to generalized pain in most people, albeit temporarily. 

In a small proportion of people, an infection, or the immune system’s reaction to the infection, can trigger long-term increased sensitivity in the pain system that does not go away, which in many cases makes the affected meet the criteria for fibromyalgia.

I have met several people who link the onset of fibromyalgia to having an infection or being vaccinated. There is some scientific support showing that people with infectious diseases such as hepatitis C, hepatitis B, HIV, and borrelia are at greater risk of developing fibromyalgia.(34)

There is also some support that certain types of vaccinations may increase the risk of developing increased sensitivity in the pain system, even if the risk is very small.(32) Now I would like to point out that the connection with vaccination is weak and that this should not prevent anyone from getting vaccinated, as the benefit outweighs the risk in the vast majority of cases.(32) 

For example, I believe that the risk of developing fibromyalgia as a result of receiving Covid-19 is significantly greater than that of developing fibromyalgia as a result of vaccination against Covid 19.

As previously mentioned in the section on injury as a risk factor, it is common for people with autoimmune diseases such as rheumatoid arthritis to develop fibromyalgia. This may be due to the injuries that the disease causes in the body. 

Another possible cause is the increased activity of the immune system found in autoimmune diseases. In rheumatoid arthritis and also other types of autoimmune diseases, there are elevated levels of the cytokines that we know can make the pain system more sensitive.(35,36)

Genes

As I mentioned in the video about fibromyalgia being hereditary, twin studies have shown that about 50% of the risk of developing fibromyalgia depends on the genes and 50% on the environment.(4)

This means that if you have a close relative with fibromyalgia, that is a sibling, a parent, or a child, the risk of having or getting fibromyalgia is about ten times higher.(4)

For example, if a mother has fibromyalgia, the risk of her child getting fibromyalgia is 25%.

In a study that looked at gender differences for how high the risk was for developing fibromyalgia in children of mothers with fibromyalgia, 41% of the female and 14% of the male children were affected.(37) To determine this, the diagnostic criteria from 1990 were used, which miss many men with fibromyalgia.(38) 

This means that the proportion of male children who develop fibromyalgia is likely higher than 14%. According to the newer diagnostic criteria, about 2/3 of those who get fibromyalgia are women.(38) The significantly higher number of affected women probably means that one or more of the risk-increasing genes are located on the sex chromosomes.

The genetic risk of developing fibromyalgia exists not only in one gene but more likely as a result of variants of hundreds, perhaps even thousands of genes.(4)

This means that the genetic risk can be gradually more or less strong depending on how many gene variants that increase the risk of fibromyalgia a person has. (This means that the box for the genetic vulnerability of developing fibromyalgia can be of different height).

To summarise

Fibromyalgia is caused by many different things that also have causes. Researchers have been able to identify several crucial causes that are required for a person to develop fibromyalgia. These causes are called risk factors. The risk factors are injury, insufficient sleep, stress without adequate recovery, infection, and genes.

The various risk factors can be more or less strong depending on how extensive they are, which can be illustrated with boxes of different heights. The height of the combined stack of risk factors determines whether a person has fibromyalgia or not.

A relevant question that arises is whether one strong risk factor can be enough or whether you must have several to develop fibromyalgia.

I think you can have such a strong genetic vulnerability to develop fibromyalgia so that no other risk factor is required. I have met several people who have had fibromyalgia already as a child without having had any injury, lack of sleep, extensive stress, or infection that could be linked to the onset. However, those affected have always had a close relative who had fibromyalgia or chronic pain, which indicated that the cause of fibromyalgia was genetic.

Another relevant thing to address is that the genes are likely to affect the other risk factors. It is often said that something is caused by heredity or the environment where heredity is responsible for the genes you receive from your parents and the environment everything you are exposed to during your life. However, there is also heredity in the environment, which means that the genes affect what we are exposed to.(39)

If, for example, we take the risk factor injury, genes can affect many different causes of injury. For example, they can affect how risk-averse a person is, which in turn affects the risk of having a traffic accident. The genes can also affect the risk of osteoarthritis or a rheumatic disease that leads to injury and in turn is a risk factor for fibromyalgia.

The genes can affect the risk of getting insufficient sleep, becoming stressed, and the reactions that cause an infection to trigger fibromyalgia as well. So a more accurate illustration of the role of genes might look like this, where a proportion of the genetic risk consists of genes that increase the chance of any of the other risk factors and of genes that in other ways increase the risk of fibromyalgia.

So now that you’ve seen this video, you know the causes of fibromyalgia, or at least the important parts of the causal chains called risk factors.

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