Fibromyalgia syndrome, soft tissue rheumatism

Constant pain that won't go away. Already in the morning a leaden tiredness and lack of strength that makes every movement a torture. All of this is part of everyday life for people who suffer from fibromyalgia.

The disease is also known colloquially as “soft tissue rheumatism”, but this term is misleading: fibromyalgia is not a rheumatic disease. It is unclear what it is instead, because its cause is unknown. This makes it difficult to treat the physically and emotionally stressful fibromyalgia symptoms. Nevertheless, there are effective therapies with which those affected can achieve a noticeable improvement in their quality of life

Overview: What is fibromyalgia?

Fibromyalgia is one of the most common pain disorders. Although it is not known exactly how many people are affected, the estimated figures for the population as a whole are high – between 1.4 and 6.6 percent. For Switzerland, this means around 122,000 to 574,000 patients. The majority of those affected are women, who make up around 85 percent of all sufferers.

Fibromyalgia means fiber-muscle pain. However, it is not only aching muscles and fibers that cause problems for fibromyalgia sufferers. The physical complaints are accompanied by tiredness and exhaustion, often also by a lack of energy and other ailments. Fibromyalgia therefore combines several signs (symptoms), which is why it is referred to collectively as a syndrome. As fibromyalgia syndrome (FMS) is permanent, it belongs to the group of chronic pain syndromes in the classification of various diseases.

Fibromyalgia syndrome mainly affects the skeletal muscles, i.e. the muscles of the neck, arms and legs. However, chronic pain can also affect the whole body. Although the pain is so obvious, fibromyalgia cannot be diagnosed using standard diagnostic procedures. Although those affected sometimes suffer from severe symptoms, there is no evidence of this either in the blood count or in examinations using imaging techniques such as X-rays, magnetic resonance imaging or ultrasound. Fibromyalgia is often only diagnosed once all other physical illnesses that could explain the pain have been ruled out.

Fibromyalgia is not an organic disease. Since neither blood nor organs are damaged, even in the case of whole-body pain that is difficult to bear, the life expectancy of those affected does not change. That is why there is no final stage of fibromyalgia in this disease.

Diagnosis: How can fibromyalgia be diagnosed?

Many sufferers experience that several visits to the doctor and examinations initially do not provide any clarity. It is often the case that fibromyalgia is only clearly diagnosed once all other possible pain disorders have been ruled out. In many cases, the diagnosis – and corresponding targeted treatment of the disease – is therefore made very late. There are certainly criteria that can make a clear diagnosis of fibromyalgia easier.

Diagnosis with the Widespread Pain Index (WPI)

First of all, your doctor will want to find out as precisely as possible where you are experiencing pain. The answer “everywhere” would be too imprecise for a reliable diagnosis of fibromyalgia. Therefore, a diagnostic scheme such as the Widespread Pain Index (WPI) can help to identify the physical pain zones: Here, 19 zones are labeled on a full-body drawing (e.g. jaw on the left, lower abdomen, upper arm on the right). The patient should mark with a pen which of these 19 areas of the body have hurt or reacted sensitively to touch in the past few days. One point is added for each place ticked, so up to 19 points can be added together.

Fibromyalgia syndrome – intensity and duration of pain

Further questions from the doctor relate to the intensity (severity) of the pain experienced. Their duration also plays a role: if they have been present for three months or longer, this is a further indication that the clinical picture is fibromyalgia. If all these details are determined and clearly defined threshold values are exceeded, fibromyalgia can usually be clearly diagnosed. However, if only a single, isolated area of the body hurts, for example the shoulders and neck, then there is no fibromyalgia.

Fibromyalgia diagnosis with the Symptom Severity Scale (SSS)

Another method for making a fibromyalgia diagnosis is the so-called Symptom Severity Scale (SSS). Here, too, those affected should provide personal details, for example about the frequency of concentration problems or states of exhaustion. If a certain number of points is reached in the questionnaire, this indicates the presence of fibromyalgia.

In order to make a particularly reliable diagnosis, doctors often use both methods, both WPI and SSS.

Ultimately, it is the patient’s own information that is decisive in determining whether fibromyalgia syndrome is present or not. Standard medical diagnostic procedures (e.g. X-ray, ultrasound, blood count) may help to rule out other clinical pictures that are similar to fibromyalgia.

Causes and risk factors: How do fibromyalgias develop?

The cause of fibromyalgia syndrome is unknown. Those affected react hypersensitively to pain, but there is no medical explanation for this. It is generally accepted that fibromyalgia is not an inflammatory or rheumatic disease, as was assumed a few years ago. The following assumptions are currently being discussed and researched in medicine:

  • It is possible that altered metabolic processes lead to increased sensitivity to touch. As a result, for example, slight pressure on a part of the body that is normally harmless is perceived as painful.
  • Patients who have previously been diagnosed with rheumatism appear to be more susceptible to fibromyalgia.
  • A genetic predisposition to fibromyalgia syndrome is also possible.
  • Stress experienced in the past could play a role. It is conceivable that experiences of stress in childhood can trigger a pain syndrome in later years. This is due to structures in the brain in which the processing of stress and pain can overlap.
  • The inflammation of nerve tissue could be involved in the development of fibromyalgia. This process, called neuroinflammation, mainly affects nerves in the brain and spinal cord.
  • Many people affected by fibromyalgia syndrome have been found to have damage to fine nerve fibers, which are mainly located under the skin. However, it is unclear whether this so-called small-fiber neuropathy is the cause or a consequence of fibromyalgia.

Symptoms: How do fibromyalgias manifest themselves?

There are numerous signs of fibromyalgia. Several dozen such symptoms are known, but they do not all have to be present to be considered fibromyalgia syndrome. Four core symptoms are decisive for the diagnosis of fibromyalgia:

  • Persistent pain; either in several large areas of the body or in the form of whole-body pain.
  • Sleep disorders; the deep sleep phases in particular are disturbed or may even fail completely.
  • Chronic tiredness and exhaustion; at least in part, the permanent fatigue is a result of disturbed sleep.
  • Cognitive disorders; they impair concentration and memory, for example. Those affected are often unable to think clearly and feel “foggy”.

For most sufferers, these four core symptoms are not the only ones. The majority of patients suffer from at least one of many other possible symptoms. These include:

  • Lack of mental resilience
  • Depressive moods
  • Feelings of anxiety
  • Digestive disorders
  • Irregular heartbeat
  • Sexual disinterest
  • Sensitivity to stimuli (light, noise, touch)

Prognosis: How do fibromyalgias progress?

People suffering from fibromyalgia usually experience pain in their muscles, joints and bones. Although these painful sensations are permanent, they do not always occur with the same intensity. External influences such as weather, exercise, physical strain and emotional stress can alter the perception of pain. Negative, but also positive.

Many fibromyalgia patients have experienced that it hurts them to move. Even brushing your teeth or other simple tasks can become a burden. The painful movements associated with the disease therefore often lead to those affected taking it easy. But muscles that are inactive atrophy. The result is muscle wasting, which in turn leads to discomfort. A vicious circle.

Breaking the vicious circle is not easy. But it is possible in very many cases. And despite all the discomfort it creates, fibromyalgia lacks a negative characteristic that causes worry and anxiety in other diseases: fibromyalgia does not damage organs, and it does not reduce life expectancy.

Therapy: How are fibromyalgias treated?

Many patients suffering from fibromyalgia are longing for an effective medication. After a tablet that eliminates all pain and finally makes a carefree life possible again. But there is no such miracle-working anti-fibromyalgia pill. Even the common painkillers frequently used in medicine are usually ineffective in fibromyalgia. However, this does not mean that you have to let the disease do nothing. Research shows that multimodal approaches to fibromyalgia can contribute to an improved quality of life. These usually consist of medication, physiotherapy, lifestyle changes and sometimes also psychotherapeutic interventions.

Fibromyalgia: these sports can help you

If the fibromyalgia is not extremely severe, regular exercise, preferably in the form of light endurance training, helps in many cases. Many patients have had good experiences with swimming, aqua aerobics, cycling or Nordic walking. Do not regard these sporting activities as harmless replacement therapy for missing medication, as their effect can be considerable. However, the most important prerequisite for benefiting from this positive effect is the willingness to become active. It is often possible for the pain to intensify for a short time when you take up a sporting activity, but in most cases this is no cause for concern. The aim should be to strengthen the body and make it flexible again without overstraining it.

Relaxation techniques and behavioral therapy

In addition to regular exercise, you should also try out whether other activities can improve your quality of life. Fibromyalgia patients have had good experiences with yoga, tai chi and autogenic training, for example, as well as guided relaxation or meditation exercises. It can also be helpful to treat fibromyalgia syndrome psychologically, for example with the help of cognitive behavioral therapy (CBT). In the process, those affected learn to recognize negative behaviors and thought patterns that intensify their pain. Patients should then learn new mental strategies for coping with pain. Or new strategies for reducing stress and improving sleep at night.

Fibromyalgia syndrome – Medication

If the fibromyalgia syndrome is more severe, medication can be used in addition to physical activity. The type of medication (e.g. anti-inflammatory drugs, pain-relieving psychotropic drugs) depends on the individual severity of the illness. Since the course of fibromyalgia is different for everyone affected, doctors make different decisions depending on the individual case.