Almost unexplored disease is a constant pain 2

Almost unexplored disease is a constant pain

Fibromyalgia patients often suffer from insomnia. So far the disease has hardly been researched, so there are no suitable medicines for successful treatment.
Fibromyalgia patients often suffer from insomnia. So far the disease has hardly been researched, so there are no suitable medicines for successful treatment.

Klose / DPA


Sometimes it is tolerable, just as a full companion, sometimes loosening and swallowing his carrier like an angry tsunami. This pain comes from a disease called fibromyalgia. Those who suffer from it are usually left to themselves because "fibro", as it is suffering from syndrome, is little known and is not recognized in society. Hope is often only available to sick people in the self-help group, such as a clinic in Neuburg

Six women sit together in a small group at the Neuburg children's clinic. "What was your week?" She asks one of her neighbors. "Good," comes a brief answer and a grateful smile. The mood in the small room is resolved, feels like a meeting between long-time friends. But behind the apparent joy is deep despair. Because each of these women has a long temptation behind them. For decades, they have been fighting for fibromyalgia – a fight that can never be won.

If you hear the first time, you can not imagine anything as an outsider. Muscle fibers? Sounds more like less painful muscles. In fact, the symptoms are sometimes similar. Bully pain penetrates the body, sometimes in the hand, then in the leg, sometimes in the whole body. But while the pain does not go harmless and dissolve into nothingness after a few days, the pain in fibromyalgia patients remains forever. "It's hard to have just pain, unpleasantness takes away energy and I often want the day to end in the afternoon," says one patient. It could not work for years, as many people work with "fibrous". Another woman in the room is still working. "Most of the time the work interferes with me, only sometimes the pains spill, and I can hardly concentrate," she says.

He does not talk about his illness with his colleagues. Also not with friends or acquaintances. There would be no understanding. Fibromyalgia is barely known, even in a physician. "We have already received so many diagnoses, but one day they always put you in a psychological trace, so in the end you do not think you're doing the right thing," recalls the other woman of her distress. He has been in illness for 40 years, after just getting a diagnosis. "I feel like I have a clutch in it, so sensitive to my body."

Especially diagnosis is a major problem with the disease. Fibromyalgia is not measurable and can not be detected by blood, ultrasound or ECG. "What you do not see, it does not exist, so we are quickly labeled as depressing," explains Alicia Kotas, spokeswoman for the self-help group. Fibromyalgia is only when there can no longer be another disease – a diagnosis based on the exclusion principle. One of the rare ways of recognizing "fibro" is certain points of pain on the body. The questionnaire developed by the Fibromyalgia Association of Bavaria gives those affected by the ability to find traces of the disease. Do you have a feeling of baking like a nettle? Is there a lightning strike? Is the light touch already painful? If you answer that question with that, you have a typical "fibro" symptom. Add to this sleeping, forgetfulness, irritable bowel and many other complaints that patients often have little power for the simplest activities in everyday life. "If I want to suck or clean the kitchen, I'll pay him the next day with a lot of pain," says Silvia Priller, who runs a self-help group as a deputy.

Why women suffer from this disease, women do not know. As difficult as diagnosis, so unknown is the cause of fibromyalgia. It may be a trauma in childhood, but it may also be a brain disorder. Therefore, the disease therapy is severe. There are conventional pain medications against complaints, otherwise there is only rehabilitation and self-therapy. "It helps me with the bath for warmth." "Barfulaufen makes miracles for me." Most women have to be treated, and health insurance only pays. Massage mats, thermal pads and bathtubs have a lot of weight in the family fund. "I would like our disease to be recognized, then we could try alternative medicine," says Kotas.

The woman's greatest hope is that the future fibromyalgia disease will be taken seriously and better explored. That's why they fight for the next generation of people. By participating in the researches of the association, among other things, providing information on their sleep disorders, explaining which diet helps and which tablets, self-help groups want to turn their attention to incurable syndrome. Until then, while they can not relieve the doctors, their favorite place is a self-help group. Here colleagues are suffering, no one understands them, and for the first time encounter their illness for understanding. The self-help group meets each other Wednesday at 6 pm at the Neuburg children's clinic. Other people with chronic pain can also come in.