What does the name fibromyalgia mean?

Fibromyalgia - literally fibre-muscle pain - is the name of a chronic pain disorder. Fibromyalgia has many facets and thus occupies many disciplines in the course of its development. The possible symptoms are manifold. That is why it is now called - fibromyalgia syndrome, abbreviated FMS. In everyday life, "fibromyalgia" is still often used.

According to current knowledge, fibromyalgia is a functional, somatic syndrome. What does that mean? It's defined by physical symptoms, hence "somatic." It's a combination of many symptoms for which no organic cause can be found, hence "functional". Women are affected about nine times more often than men. About 2-3 percent of the German population suffers from fibromyalgia. More than 2 million people. The number of unreported cases is estimated to be high.

What is fibromyalgia not?

• a terminal illness
• Rheumatism - also not soft tissue rheumatism
• a metabolic disorder
• a degenerative disease
• a purely mental illness

The symptoms

The main symptoms are

• deep muscle and joint pain in the upper and lower body, on the right and left side
• Insomnia
• Exhaustion

However, up to about 150 symptoms can be associated with the disease

Other possible symptoms

Here is a selection of the other possible symptoms. Not every person with fibromyalgia has all of these symptoms. They are not listed according to severity or significance.

• Irritable Bowel Syndrome
• Fatigue / tiredness
• Shaking or tremor
• Memory problems
• Muscular weakness
• Headaches
• abdominal cramping or pain
• Feelings of numbness
• Dizziness
• Depression
• Constipation
• Irritable Stomach
• Nausea
• Diarrhoea
• Dry mouth
• Dry eyes
• Sun sensitivity
• Hearing problems
• bruises easily
• Bladder problems
• Morning stiffness
• Word finding disorders
• Concentration disorders
• Noise, light sensitivity
• Swelling of hands and feet
• amongst others

What causes fibromyalgia?

Understanding fibromyalgia syndrome is very difficult, even for doctors and therapists. A lot of research on the disease has been carried out. It has been officially recognized as a disease for over 30 years, but it has existed for much longer. https://www.news-medical.net/health/History-of-Fibromyalgia.aspx

However, the exact cause has not yet been determined.

Disturbance of pain processing

According to current scientific knowledge, the disease is based on a bio-psycho-social approach, in which a disturbance of pain perception is added. What does "bio-psycho-social" mean? A disorder that affects body and soul and has an impact on all areas of life.

What does "pain processing disorder" mean? That the brain already interprets stimuli as pain that are insignificant for healthy people. The nervous system is constantly on alert. To illustrate: If you are driving a car and hear a siren behind you and see blue lights, you quickly make an effort to give way. You are on alert. This state is permanent in sufferers. Normally, pain has to pass through a gate. The healthy nervous system controls whether the pain is significant and should be let through or not. This gate is wide open in fibromyalgia sufferers. Seratonin, a messenger substance that suppresses pain, is not present enough. Instead, substance P, which reports pain to the brain, is excessive. The fact that people with fibromyalgia often also have to deal with other diseases, in which central pain processing plays a role, also speaks for this research result.

Examples of this are:

• Migraine
• Irritable bowel syndrome
• Interstitial cystitis
• Craniomandibular dysfunction or other diseases of the jaw muscles

This may also be the case for people with rheumatoid arthritis or osteoarthritis. In this case, we are talking about secondary fibromyalgia.

Mental and physical stress

Mental and physical stress situations in our biography could favour the development of the disease.

You read that fibromyalgia is not a mental illness. However, mental stress can be involved in its developement. Once the word "mental" comes up, it can lead to wrong treatment decisions and a defensive reaction in patients. The already existing prejudices against people with fibromyalgia can increase. One component of our therapy may be targetted to improve mental health, but this must not be the only one.

A significant number of those affected report of stressful or traumatic events in their childhood or adolescence. Or they describe long-lasting psychological stress in their family or professional environment.

Studies have shown that women with fibromyalgia are slightly more likely to have been affected by abuse or sexual abuse in childhood or adolescence.

Not all people with fibromyalgia also have a mental illness or traumatic experiences. The disease can lead to depression due to the difficulty in coping with it.

Genetic factors

Since the disease can occur more frequently in families, research has been carried out on the genes.

Certain gene variants are more common in people with fibromyalgia than in healthy people. These genes enable messenger substances that are involved in the physical and psychological processing of pain. See above.

Norepinephrine and serotonin should be mentioned. No specific "fibromyalgia gene" which clearly leads to the disease has been discovered.

Which factors are not likely to be the cause?

Studies have not yet been able to prove that the following factors cause fibromyalgia.

• Infectious diseases like Lyme disease
• traffic injuries
• disorders of the thyroid and sex hormones

Not all studies have led to an improvement in diagnosis or treatment. The reasons for this are too few participants, lack of comparison groups, and insufficient follow-up of participants.

How is fibromyalgia diagnosed?

The diagnosis fibromyalgia does not exclude the presence of other diseases. Nevertheless, it is important to find out whether there is another disease that fully explains the symptoms of the patient.

It takes an average of 7 years to be diagnosed and every fifth patient is plagued by permanent pain for more than 20 years.

In 2010 - The American College of Rheumatology - set new criteria for the diagnosis of fibromyalgia. They were revised again in 2016.

The diagnosis is mainly based on a survey of your life situation and medical history as well as sleep and existing complaints. The aim of the survey is to record the pain in 19 defined body regions on a scale ("widespread pain index"). Similarly, the remaining complaints are entered on a scale ("symptome severity scale score"). The pain sensitivity of the 18 pressure points is still relevant but no longer recommended because it is not reliable.

The important realization as a result of our own research was that we were able to prove that fibromyalgia syndrome is an organic, i.e. measurable finding in the nervous system and this with reference to a disease often classified as "psychogenic".

Prof. Dr. Claudia Sommer

Natter, A. (2020, May 9). Patients in a vicious circle: Where and how pain becomes chronic. Retrieved May 14, 2020, from https://www.mainpost.de/ueberregional/journal/wellnessundfitness/Patienten-im-Teufelskreis-Wo-und-wie-Schmerz-chronisch-wird;art18065,10415696

In addition, a detailed anamnesis will be taken, which also includes documenting the medication taken.

This is followed by a very thorough physical examination and a blood test. The latter serves mainly to exclude other diseases.

How is fibromyalgia treated?

The disease is still incurable. But the symptoms can be alleviated. Fibromyalgia manifests itself very individually in each sufferer. Therefore, it is good if the treatment is worked out specifically for the affected person, and not in a generalized way. The aim is to relieve the symptoms and improve the quality of life. Fibromyalgia affects all areas of life, so a holistic approach is good. And it is important to become an expert at managing your disease - knowing what helps you and what doesn't.

Patient training - an overview of fibromyalgia

After the diagnosis, it is very helpful to participate in patient education. Here, doctors and therapists give an overview of the course of the disease and the different forms of therapy. Self-help associations, doctors, therapists, rehabilitation centres, etc. offer forms of patient education.

Relaxation instructions - recovery from fibromyalgia

People with fibromyalgia are on constant alert. What does that do to the body? It's tense. It may help to learn a relaxation method. The therapy is very varied. Constant research is being done on the disease. The treatment approach is being revised continuously. This is all good and beneficial. But sometimes it can be overwhelming or too demanding to deal with. Here, too, it can help to distance yourself a little from it through relaxation. Relaxation can be a building block in your therapy. Examples of this are:

• Autogenic training
• Progressive muscle relaxation
• Tai chi
• Qi Gong
• Yoga
• Mindfulness

Exercise therapy - avoiding persistent pain

It is very important to keep moving. I know the sentence: "Why don't you do sport?" can be annoying or hurtful. That's why we can't hear it. We would like to be sporty or used to be. A little exercise is always better than none at all. Everyone can find out for themselves what the best form of exercise is

• regular walks (if necessary with dog as motivator)
• Cycling
• Exercise therapy in water
• Nordic walking
• Swimming

This is only a small selection. It is possible that your pain may be worse at first after exercise. It is important to start in very small steps so as not to lose your motivation. If you manage to maintain some kind of exercise routine at a reasonably regular pace, you will feel better over time. It should not be a prescribed punishment but rather experienced as a pleasure. This is important. So find something you like to do.

Recent studies show astonishing results: Even a small amount of exercise can lead to measurable positive effects. Summary of the study "Brisk Walking" (English ) . Consciously incorporating small activities into everyday life, such as walking, going for a walk, climbing stairs, riding an ergometer, more intensive work in the household or in the garden have a favourable influence on the perception of pain and improve well-being.

Self-help group

In self-help groups, those affected experience encouragement and attention Self-help group Campfire

Physical therapy - what helps with fibromyalgia

• Lymph drainage
• Reflex zone massage
• Thermo-/Kryotherapy
• amongst others

Psychotherapy - also necessary for fibromyalgia

Change behaviour patterns or perceive the pain differently. The pain does not go away from this, but it does not take up so much space all the time.

Drugs - not always the first choice for fibromyalgia

Some patients benefit from drug therapy, others not so much and have to deal with many side effects.

There is no specific medication prescribable for fibromyalgia as of yet. Some drugs are prescribed "off-label."

At present, drug therapy in Germany is limited to certain antidepressants and serotonin reuptake inhibitors as well as drugs for pain and sleep disorders.

Antidepressants are prescribed in small doses to improve sleep and to achieve distance from pain

What about opiates?

The use of opiates for other chronic pain is viewed very critically. Factors such as loss of efficacy, side effects, dependence and abuse must be considered. The German guideline on the long-term use of opioids for non-tumour-related pain (LONTS) is currently being published in an updated form.

Prof. Dr. Claudia Sommer

Natter, A. (2020b, May 9). Patients in a vicious circle: Where and how pain becomes chronic. Retrieved May 14, 2020, from https://www.mainpost.de/ueberregional/journal/wellnessundfitness/Patienten-im-Teufelskreis-Wo-und-wie-Schmerz-chronisch-wird;art18065,10415696

By "other chronic pain", pain other than tumour-related pain is meant.

Muscle relaxants, rheumatic drugs and cortisone do not have any effect on fibromyalgia-related pain.

All these components are part of a multimodal therapy that can be started as an outpatient or inpatient treatment. The aim is to develope ways and strategies to deal with the disease yourself.

Guideline

A guideline on how Fibromyalgia should be treated can be found here https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia. retrieved from the American College of Rheumatology site.

So what does it boil down to?

Although there are many treatment options, at the end of the day patient self-care is of utmost importance, in order to improve symptoms and daily function. Paired up with medical treatment, healthy lifestyle behaviours can reduce your pain, increase the quality of your sleep, lessen fatigue, and help you cope better with fibromyalgia.

This information is provided for general education only. It is based on my research and experience as a sufferer and support group leader. Individuals must consult a qualified health care provider for professional medical advice, diagnosis, and treatment of a medical or health condition. This article does not replace a visit to the doctor. I refer to links below, which provide more detailed and accurate information about the disease and self-help.

https://www.fibromyalgie-fms.de/startseite

https://fibromyalgie-bayern.de/

https://www.selbsthilfebuero-korn.de/

https://www.sekis-bw.de/lag-kiss/#

https://www.nhs.uk/conditions/fibromyalgia/

https://www.dag-shg.de/

Photo by Manos Kolovouris on Unsplash

Sources:

Fibromyalgia - causes, symptoms and therapy. (2019, February 22). Retrieved May 14, 2020, from https://www.deutsche-familienversicherung.de/ratgeber/artikel/fibromyalgie-ursachen-symptome-und-therapie/

Health insurance company headquarters . (2020, March 12). Fibromyalgia - causes, symptoms and treatment. Retrieved May 14, 2020, from https://www.krankenkassenzentrale.de/wiki/fibromyalgie#

Institute for Quality and Efficiency in Health Care (IQWiG). (2018, February 21). What is known about the development of fibromyalgia? Accessed 14 May 2020, from https://www.gesundheitsinformation.de/was-weiss-man-ueber-die-entstehung-von.2607.de.html?part=ursachen-ks

Pfizer Inc, & The American College of Rheumatology. (2011, May). AMERICAN COLLEGE OF RHEUMATOLOGY (ACR)preliminary diagnostiC Criteria for fiBromyalgia. Retrieved May 14, 2020, from https://www.pfizerpro.com/sites/default/files/lyrica-pbp01671d1283062-01_acr_diagnostic_tool_for_fm.pdf

Natter, A. (2020, May 9). Patients in a vicious circle: Where and how pain becomes chronic. Retrieved May 14, 2020, from https://www.mainpost.de/ueberregional/journal/wellnessundfitness/Patienten-im-Teufelskreis-Wo-und-wie-Schmerz-chronisch-wird;art18065,10415696

Fibromyalgia syndrome Living with the fiber-muscle pain. (2020, April). Bio The magazine for the health of body and soul, (2/2020), 18.

This video shows a lecture on fibromyalgia by Dr. Andrea Nicol, a very compassionate and understanding doctor.