“I found myself with a broken body,” was one of the phrases that struck me the most when I listened to my mother (Claudia) who told me about this strange disease that even doctors can not explain. “Sometimes it becomes unbearable: generalized pains, intolerance to the cold, intense heat, friction of the garment …”, he describes and my eyes fill with tears because there is no concrete explanation or treatment.
“You want the magic pill to stop suffering, but it does not appear and you get frustrated, you get worse and the fear increases instead of disappearing,” said Claudia.
Why Because it’s apparently pure and exclusively emotional. “The cause of this pathology is still unknown, it is assumed that the fibromyalgia results from an extreme sensitization of the nervous system or genetic origin, appeared after physical or emotional traumas, by modifications of the areas of the brain responsible for the pain or an infection. “, Explains Dr. Ernesto Crescenti (MN: 50,776) , physician, researcher and director of the Institute of Immunology.
“The American College of Rheumatology has defined fibromyalgia syndrome based on a history of generalized pain of at least 3 months, associated with a sensitivity corresponding to at least 11 of the 18 sensory points,” says Dr. Gonzalo Yamauchi. , a specialist in family medicine and musculoskeletal medicine.
“Pain can have many forms of presentation, it can be diffuse and persistent, burning, burning or penetrating,” Yamauchi describes.
“This is a disease recognized by all international medical organizations and the WHO since 1992,” said Dr. Gonzalo Yamauchi.
“The most common areas are the areas lumbar, cervical, shoulders, knees, thighs and arms. The pain is usually worse with colds, infections, stress and lack of sleep. Another symptom usually associated with pain is exhaustion. or chronic fatigue, for no reason that justifies it, “says Yamauchi.
Who also adds that there are sleep disorders, sleep problems or frequent interruptions of sleep during the night. In addition to stiffness in the body (usually in the morning), headaches, abdominal pain, paresthesia, numbness and vertigo.
“The course of the disease is chronic and will continue over time, but early diagnosis, correct information and a proper therapeutic approach can improve the prognosis,” said Dr. Gonzalo Yamauchi.
“This disease, which affects mostly women aged 20 to 50, causes a sensation of pain and hypersensitivity that affects the entire body,” says Crescenti.
“Living with this disease is very complicated,” says my mother. Thanks to Fundación INECO, they understand that “this is usually a stress for the family and the environment, which affects the patient with fibromyalgia, because the family member does not understand why what happens to him happens to him. ”
“It is fundamental that the patient and family psychoeducate to understand and guide them, knowing that there is a genetic burden inherited from the image,” said Dr. Evangelina Melgar, psychiatrist and coordinator of the Fibromyalgia Clinic INECO.
Tips for living with fibromyalgia
- Aerobic exercises , muscle building and stretching or flexibility, relaxation techniques to relieve muscle tension and anxiety, and educational programs that help you understand and control fibromyalgia.
- It is proposed to improve the quality of sleep and mood to improve who may be in psychotherapy or pharmacological treatments.
- Several medications used against fibromyalgia help improve hypersensitivity, but there is no clear indication for a single drug. The choice is left to the attending physician.
- Accept the disease: this is one of the most complicated parts, but the sooner this process is over, the patient will be able to live with more peace of mind. This means that you are taking pain that can be relieved, but that will always be present.
- Being able to convey what you feel: it is necessary that the patient is able to communicate to his relatives what happens to them. It can be very helpful to guide you to the doctor, not only if another person can hear the instructions, but because the more you know about the disease environment, the more you understand and help.
- Be alert for mood swings: Fibromyalgia affects mood. Often, there are behavioral changes, excessive reactions, bad mood, pessimism, apathy. The patient must know himself, because the more he is aware of what he feels and the responsibility of his mind, the easier it will be to keep him under control.
- The body to know : To know how to interpret the signals by the body, it is essential to better face the disease.
- Exercise: It is recommended to exercise, at least moderately. This will help the muscles and joints to be stronger and to resist discomfort.
- Be careful : Fibromyalgia is not an excuse to do what seems convenient and hurt you. The more we help the body live healthier, the better.
- Meet other people: going to clubs or groups can be a good place to share what’s happening, find comfort, support others, and build a network of understanding and mutual help.
What are the rare diseases?
Rare diseases, such as fibromyalgia, are those that affect a small percentage of the population and have different symptoms and conditions that will worsen according to the circumstances and characteristics of each patient.
Between 5,000 and 7,000 rare diseases can affect physical ability, mental abilities or sensory and behavioral characteristics. Most of these are chronic and degenerative diseases, 65% of which are severe and disabling.
During clinical care, it has been observed that the majority of patients who suffer from it generally have an emotional problem or are experiencing a state of anxiety or stress. These emotions that persist over time have serious consequences for the development of daily life and health.
The detection of these diseases can be dangerous and differ in time. In some cases, the diagnosis can be postponed for years because the doctor can usually interpret the symptoms as a different disease and try to improve them with general treatments.
On the other hand, it is common for the patient to experience more acute periods and other periods of remission, that is, when there is no symptomatic manifestation. The diagnosis is refined only when the patient continues the symptomatology, which can have many consequences, such as the aggravation of the disease or even the danger of death.