A mystical disease?

Fibromyalgia syndrome is a disease that has conjured up many myths. The symptoms of fibromyalgia syndrome are invisible or barely noticeable to other people. But our own family or people we are with all the time notice what is wrong with us - or do they?

Often they don't. We all have so many thoughts in our heads and work off a non-stop to-do list in our minds. In doing so, we actually miss out on a lot. The people around us feel the same way. It's hard to imagine what you haven't experienced yourself. We all know that. You don't know what it feels like. I sometimes say to my husband in the morning, I feel like a bulldozer rolled over me. It's clear what is meant by that: flattened, everything hurts, deflated... I find it even easier to picture something when examples are used that I know from my everyday life. If you have a picture in your mind of how something could be, then you can imagine it, right?

How does fibromyalgia feel for you?x

As explained in the article https://shamethepain.de/was-ist-fibromyalgie/, fibromyalgia syndrome is related to the central nervous system and affects all body parts and functions such as

  • the energy balance
  • the sleep rhythm
  • The digestion
  • the sensation of pain
  • the senses - taste, smell, hear.

Fibromyalgia syndrome looks different to you than it does to me.

Fibromyalgia syndrome manifests itself differently in each sufferer. This is true for many diseases, because we are all different.

  • The colonisation of the intestine with bacteria is somewhat different for each person,
  • we process our food differently
  • we have different lifestyles
  • the influencing factors in our lives are different.

So it is a logical consequence that we individually feel the disease differently in our body.

The approach of looking at the patient individually is only slowly gaining acceptance. In many people's minds, there is still the idea that diseases are the same for everyone. A current counter-example is the COVID-19 virus, which can have a range of courses fromno symptoms to fatal.

For some of our fellow human beings, it is hard to believe we have a disease that we cannot describe exactly and that does not show itself in the same way in everyone.

This person is in defect mode

Acute pain warns and signals that something is wrong. Our bodies are not made to work in permanent defect mode.

This person is in shutdown mode

I used to like to invite friends over and cook for them. I imagine I'm inviting twenty people. Two friends agree to come early to help me. I am confident that with their help everything will work out. In the end it turns out differently. Both friends cancel independently and probably think the other one will help. And now the super disaster - a friend posts an invitation to the party on a social media portal. Over a hundred people come. Imagine that! I already feel slain and nothing has happened.

This is exactly how pain messages work in fibromyalgia syndrome. Too many signals arrive in the brain (guests). This means that with all the confusion, a touch already arrives as pain. The pain signals are processed by
seratonin (a neurotransmitter). People with fibromyalgia have too little of this. (No friends came to help.) We are alone.
We can't cope with the work. That's why we have pain where there is no damage. It is not imagined pain. It is misinterpreted stimuli that the brain and central nervous system report as pain. (Too many uninvited guests). If the brain says you are in pain - then that is how it is for your body!

We also experience this too much in another form. Other substances in the brain cause our senses to become overwhelmed

  • We find the smallest noise disturbing to unbearable,
  • We perceive subtle smells sensitively and find them unpleasant,
  • Light can be too much, so we lower shutters at least part way or close curtains.

How does fibromyalgia feel for you?x

When we experience an overload of sensory input in addition to the increased sensation of pain, it can lead to a crash, like a PC when we have pressed too many buttons. This can manifest as massive exhaustion, anxiety, depression or panic.

How about a roller coaster ride with me?

In many chronic diseases, the course is progressive. This means that the disease gets steadily worse. In the best case, with incurable diseases, it stagnates. Some people who suffer from fibromyalgia syndrome also have periods when they have little or no pain and have few or no symptoms. It may be that a sufferer completely withdraws one day because he/she is in severe pain and can do several tasks seemingly effortlessly the other day.

We women know a comparable situation because our hormone balance is subject to fluctuations. This can lead to extreme tiredness, irritability, pain, etc. Men may also experience such fluctuations.

Some fibromyalgia syndrome sufferers may experience similar or even more extreme fluctuations.

What do I do if I come face to face with the saber-toothed tiger?

Stress - the word has been overused in recent years. It means that some people throw their hands up in horror
when they hear that someone is stressed.

All people respond to emotional as well as physical stress. A common response to physical stress is a rush of adrenaline and other neurotransmitters and hormones. This causes a kind of kick-down so that we act quickly and efficiently. Fibromyalgia sufferers do not have enough of these hormones and neurotransmitters and
therefore cannot respond appropriately. Overload occurs and symptoms are amplified.

When we talk about stress, we tend to mean emotional stress these days. We don't have that much to do with the saber-toothed tiger anymore. Right now, the impact of Corona on work and personal life can cause emotional stress.

  • conflicts at work, e.g. dismissals,
  • Overload of work and childcare at home,
  • Overstrain from dealing with sick people and inadequate protection and tools to do the job effectively.

Among other things, these emotional overloads can also lead to

  • Sleep deficit
  • poor nutrition
  • lack of exercise and balance

Conditions that in turn have the effect of emotional stress.

From this perspective, not only can the long-term effects of a corona infection cause symptoms comparable to fibromyalgia syndrome or chronic fatigue syndrome, but so can the immediate care of sufferers.

And if you imagine that this overload lasts for months or years....

Let's break away from Corona episodes and imagine everyday situations: Do you remember a traffic situation where you were just fine? You disregarded the right of way or had to avoid another car.
Do you remember the feeling of stress in your body?

Imagine if this feeling of stress was permanent. If you suffer with fibromyalgia syndrome, you most likely feel stressed all the time.

How does fibromyalgia feel for you?x

My bed and I have grown apart

Fibromyalgia sufferers suffer from sleep disorders. Such as

  • insomnia
  • Sleep apnea
  • Restless Legs Syndrome
  • Muscle tension that makes deep sleep difficult

This means we don't feel refreshed when we wake up. In addition, there are other phenomena such as bladder problems that force us to get up frequently, or we wake up because of pain and cannot find a position in which we can fall asleep relaxed.

If you have children, you may remember the first year when time for sleep is a luxury. You were running around on energy-saving mode all the time.

If you suffer with fibromyalgia syndrome, you're constantly in low-energy mode. That means you're present, but not really concentrated on what you are doing.

Not really a disease for the faint hearted

Here are a few more comparisons to show how it feels:

Imagine staying up two or three nights in a row to finish a project on time. How do you feel afterwards? With two-three nights of good sleep, all is probably right with the world again, right? With fibromyalgia syndrome, the leaden exhaustion is always there.

Imagine you write a to-do list with ten tasks for the day. You choose three to four tasks, maybe you can only do two. If you do more, you can't do anything for the next two days. How do you feel? Dissatisfied?

Imagine you look at your bank statement and 5,000 euros are missing. You have no explanation for this entry. You make an appointment with your bank. Your advisor finds no error and refers you to another advisor, who does the same. You don't understand why no one can give you an explanation for this wrong entry. Worse still, no one but you can find anything wrong.

This is how you feel when you have fibromyalgia syndrome and go to the doctor. There's no explanation for a lot of things. You keep getting referred. Noone finds anything wrong.

This situation has improved through education in the last ten years, but there is still room for improvement.

My aim here is not to just complain about it but to make some things more understandable.

Many diseases affect one part of the body or one system in the body. Fibromyalgia syndrome affects the whole body and can mean that many systems are not running well or at all. This disease, often described as scintillating or mysterious, arises from real physical causes.

See article https://shamethepain.de/du-siehst-mich-nicht/

Fibromyalgia syndrome does not disguise itself as:

  • Burnout or depression
  • Laziness and unwillingness
  • Moaner

It is the result of dysfunctions of some systems in the body and brain that are difficult to understand, difficult to treat, and so far not fixable.

Sometimes the most difficult task for fibromyalgia sufferers is to find out how they can live with it individually. It is possible to alleviate the symptoms. Understanding and help from their fellow human beings contribute to this.

You can also find support in relevant groups and communities on social media.


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Al-Nimer, M. S. M. A., Mohammed, T. A. M. M. & Alsakeni, R. A. A. (2018, August 23). Serum levels of serotonin as a biomarker of newly diagnosed fibromyalgia in women: Its relation to the platelet indices. www.jmsjournal.net. https://www.jmsjournal.net/article.asp?issn=1735-1995;year=2018;volume=23;issue=1;spage=71;epage=71;aulast=Al-Nimer

Rizzi, M. R., Cristiano, A. C., Frassanito, F. F., Malcaluso, C. M., Airoldi, A. A. & Sarzi-Puttini, P. S. (2016, February 10). Sleep Disorders in Fibromyalgia Syndrome. www.omicsonline.org. https://www.omicsonline.org/open-access-pdfs/sleep-disorders-in-fibromyalgia-syndrome-2167-0846-1000232.pdf

Schertzinger, M. S., Wesson-Sides, K. W., Parkitny, L. P. & Younger, J. Y. (2017, December 14). Daily fluctuations of progesterone and testosterone are associated with fibromyalgia pain severity. www.ncbi.nlm.nih.gov. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6046191/

Sluka, K. A. S. & Clauw, D. J. C. (2016, December 3). Neurobiology of fibromyalgia and chronic widespread pain. pubmed.ncbi.nlm.nih.gov. https://pubmed.ncbi.nlm.nih.gov/27291641/

Dellwo, A. D. (2020, January 17). What's Going On? Understanding Fibromyalgia. www.verywellhealth.com. https://www.verywellhealth.com/a-simple-explanation-of-fibromyalgia-716142


Photos by Jr Korpa and Mitchell Hollander on Unsplash