Often those who suffer from fibromyalgia feel pain throughout the body, a symptom that brings social and family misunderstanding. Hence the need to reach agreements on how to deal with this ailment.
In order to learn about its particularities and behavior, Dr. Luis Pereira Sarduy, Rheumatologist at the Lucía Íñiguez Landín Surgical Clinical Hospital in Holguin, shares some professional experiences.
What are the particularities that make fibromyalgia a difficult disease to manage?
“As fibromyalgia is a chronic widespread pain syndrome, with recurrent pain in multiple areas of the body for three months or more, accompanied by intense fatigue that does not improve with rest, sleep problems such as insomnia and even cognitive difficulties that bring what is called ”mental fog” or memory and concentration problems it can be understood that its complexity lies in the fact that there is no single known cause.
“A clinical diagnosis is established, based on symptoms, because there are currently no specific laboratory tests. Then, as the symptoms are so variable from one patient to another and even in the same patient as the years go by, it will be understood how complex it is to reach an accurate diagnosis”.
From the clinical diagnosis, how is it applied in routine medical practice?
“Because we do not have a specific biomarker, an analytical test or an X-ray to evidence or complement the diagnosis. We rely on criteria established by rheumatology colleges, such as the American College.
Such criteria include the presence of widespread pain and the persistence of other key symptoms such as fatigue and unrefreshing sleep. The importance of ruling out the presence of other diseases with similar symptoms. Such as some autoimmune diseases or hypothyroidism, should also be kept in mind.
“Such behavior usually brings with it a long diagnostic path that can generate frustration in the patient, who, overwhelmed by so many symptoms, has often gone through other specialists beforehand”.
What other symptoms or clinical manifestations can lead to suspect the presence of fibromyalgia?
Rheumatologists look for increased sensitivity to stimuli such as light, smells or noises in addition to the more familiar symptoms. Other cases may present irritable bowel syndrome, tension headaches or migraines, restless legs syndrome, anxiety and even depression. To better understand fibromyalgia, it should be known that it can affect many body systems. Which can considerably affect the quality of life of those affected.
“In that sense, constant pain and fatigue limit the ability to perform daily activities, from the most basic ones such as dressing or cooking, to leisure or exercise activities. On the emotional level, the chronicity of the symptoms, the lack of understanding of the environment and the lack of an accurate diagnosis can lead to frustration, sadness and even depression.
At the social level, patients are often isolated because they do not feel able to keep up with their friends or family, or because of the lack of understanding of the environment in which they develop.
What is the therapeutic approach adopted by specialists in the care of fibromyalgia sufferers?
There is currently no cure for fibromyalgia. However, we do have very effective therapeutic strategies to manage symptoms and significantly improve quality of life. A multidisciplinary and individualized approach is sought, which includes pharmacological measures consisting of analgesics, muscle relaxants and drugs to improve sleep or low-dose antidepressants that have proven effective in chronic pain.
“In addition, of similar importance are non-pharmacological measures, including adapted and progressive physical exercise, whether walking, swimming or tai chi. Cognitive-behavioral therapy is used to help manage pain and associated emotions. Patient education about the disease is key to empowering the patient. Hence the usefulness of stress management techniques such as meditation.”
Where do the most common myths about this disease lie?
“Among the most common myths is the one where people believe that ”it is all in the patient’s head”, which is false. Fibromyalgia is a real disease, with pathophysiological mechanisms that involve an alteration in pain processing at the central nervous system level. Another myth is that there is nothing to be done, because although there is no cure, there are many strategies for improvement. It is often thought to be a degenerative or life-shortening disease, when it is not, because although it is chronic, it is not degenerative”.
What can fibromyalgia sufferers do to improve their quality of life?
“Adherence to the therapeutic plan is crucial. Hence, the main recommendations are given in knowing your disease well, which helps to make better decisions. Exercises should be practiced regularly, adapted to each patient, but constant. I also recommend establishing routines to improve the quality of rest.
It is important to manage stress through techniques that work for them. The patient must be armed with patience and perseverance, because although the changes are not immediate, with perseverance the results can be seen. Always seek support either from family, friends or patient groups. You are not alone. There is a common social challenge, more visibility, understanding and less stigma. Fibromyalgia is real, the suffering is real, and these people need new ways of coping with fibromyalgia.
It is essential that we continue research to better understand its causes and develop more effective treatments.
It should be noted that this is not a progressive disease. Although it is surrounded by false stigmas and ignorance, it does not cause death, nor does it destroy joints or any organ. One must learn to live with it with the best possible quality of life.
Translated by Aliani Rojas Fernandez
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