In Italy, are two million people who suffer from fibromyalgia , in 9 cases out of 10 women. Of that which until now was called the ” invisible disease “, we start talking more and more. We at Donna Moderna do for some time, collecting your stories , trying to work out with you how to live with this condition , and especially always putting you apprised of the latest news . Like those that emerged from the meeting that took place in Bergamo, where a group of experts met to take stock of the latest research, figure out if and when the fibromyalgia It will be recognized as a disease, and especially help those who suffer to find the right path for treatment.
We were there and we asked Dr. Eleonora Bonacci, medical specialist in Rheumatology at the Hospital Rehabilitation Unit of the San Marco of Zingonia (Bergamo), to explain what we know today about fibromyalgia (in light of recent studies), as takes the diagnosis , what is the referring physician, as one would care. Here’s what he said.
What exactly is fibromyalgia?
It is a condition characterized by chronic widespread pain associated with tenderness, that is, the feeling of pain localized, which becomes acute in some situations, for example a hug or an accidental and unexpected contact. Add to that a series of events seemingly unrelated to each other, but common in fibromyalgia patients, including fatigue, sleep disorders, disorders of the central and autonomic nervous system.
So it’s not a disease?
In Italy not now. The Ministry of Health has not yet been inserted in Lea (essential levels of care, ie the list of benefits that the National Health Service guarantees to patients). Yet, in 2010, fibromyalgia was officially c odificata as a disease in the International Classification of Diseases (ICD-10) World Health Organization, and other countries of the world from time he already had the legitimacy of diseaseself. But there is good news: I miss his official recognition as a disease. Experts now even we agree to consider it a disease in its own right. For years there has been a real battle, he sees at the forefront of several associations: the most active is the Fibromyalgia States Italian Committee , which has just had a positive meeting with the Ministry of Health, where he presented research and studies on the disease.
Primary care physicians know fibromyalgia?
There is little information on fibromyalgia , sometimes even among specialists (rheumatologists included). The education and knowledge of the disease play an important role in the diagnosis and therapy, and in the quality of life of patients. The patient, family and doctors need to know that is a real cause of chronic pain and fatigue , and therefore should be approached like any other chronic illness . Fortunately it is not a fatal disease, and does not cause deformities. Knowing that is not progressive or deforming may allow people to avoid continuing to undergo expensive tests and unnecessary.
You know what causes fibromyalgia?
They are the subject of several studies. What is known so far, it is that the causes are manifold. First, there may be a genetic predisposition : the data now tell us that the family members of patients with this disease are more likely to have fibromyalgia . It probably is not a single gene that transmits it, but of parts of different genes involved in pain perception mechanism. Then the genetic factor would alter other environmental elements : physical trauma (eg an accident) or psychological (bereavement, divorce); infections, such as Lyme disease and hepatitis C; great stress and eventually other chronic and degenerative diseases , such as’ rheumatoid arthritis, Systemic lupus erythematosus, hypothyroidism, which “carry around” fibromyalgia often.
Because fibromyalgia sufferers feel pain all over?
Because these people the chain of transmission of pain does not work as it should. In practice it goes haywire the transition from the perception of the painful stimulus to the development of pain in the brain . In these patients (80-90 percent represented by women ) there has been an increased release of neurotransmitters in the pain, in addition to activation of brain areas much larger than those not fibromyalgia. Sufferers of fibromyalgia , in short, has a pain threshold very low.
In addition to chronic widespread pain, what are its symptoms?
About 90 percent of patients testing a fatigue generally always present, which in some cases becomes much more annoying pains in muscles. This fatigue can be similar to that found in people who suffer from chronic fatigue syndrome, but the two syndromes often overlap and can be hard to tell them apart: some fibromyalgia patients have symptoms of fatigue syndrome and vice versa.
Sleep disorders are related to fibromyalgia?
In most cases yes. The disease affects the quality of sleep , the lack of which, in turn, worsens the conditions of the people. In fact, this accentuates the feeling of tiredness: wake up, you feel more tired than before. And it becomes more sensitive to pain. The latest studies have shown that disruption of the deep stage of sleep can alter the perception of pain. Sleep becomes lighter, with constant awakenings, and is often accompanied by “restless legs syndrome.”
What is fibro-fog?
It is typical alteration of fibromyalgia , which causes difficulty in concentration and memory, or performing simple mental calculations. This discomfort can be persistent, with repercussions on daily activities, but also at work. These symptoms, however, can happen to people with chronic diseases, not only of fibromyalgia nature, and may be associated with depression.
Depression is cause or consequence of fibromyalgia?
The causes are still investigating. However the two diseases go hand in hand. To date, only 25 percent of patients are actually depressed or have anxiety disorders , while generally the fibromyalgia causes changes in mood because of the difficulty of people to manage their symptoms. Many patients tell me they love life, they were always positive, and that only after the onset of symptoms their mood has changed. So you could say that it is easier to get sick depression once discovered to have fibromyalgia, which is not the opposite.
The headaches and disorders of the colon are related to fibromyalgia?
The tension headache , but also the ‘ headaches are symptoms of fibromyalgia. But as morning stiffness (especially neck and hands), irritable bowel syndrome, pins and needles sensation in hands and feet, burning with urination, intimate burning, pain during sexual intercourse, a feeling of swelling in the hands, chest pains .
How can the diagnosis of fibromyalgia?
The referring physician is a rheumatologist who must physically examine the patient and be talked her medical history, with particular attention if you have other conditions (such as rheumatoid arthritis or endocrine disorders) or if you have suffered physical and psychological trauma particular. Until recently, the specialist elaborated the diagnosis referring to the 18 “tender points”, points that cause pain when pressed with a defined pressure (have been mapped by the American College of Reumathology, who first defined the disease in 1990). When he riscontrava least 11, the diagnosis was clear. In fact, in the meantime we have seen that this condition could have ups and downs: not every day the person was at least 11 tender points out of 18. And then you could have pain in other parts of the body and there were still other symptoms to be evaluated. Because of the complexity of the disease, in 2010 has been proposed a revision of the diagnostic criteria . Now then we focus more on pain and tenderness and other symptoms, rather than on matters of “tender points”.
This does not mean that it is unimportant to visit the patient. What matters is being able to have a general framework. I’ve heard of people “visited” by email. You can not tell if you suffer from fibromyalgia without the actual visit, also because the diagnosis of fibromyalgia and the presence of other painful disorders, musculoskeletal or other, are not mutually exclusive and can coexist in the same person. In short, the diagnosis is complex and time consuming.
Is there a treatment?
The therapy is multidisciplinary: it has just officially established a group of experts from 12 countries, gathered under the aegis of the European League Against Rheumatism (Eular). The specialists have prepared guidelines to address and treat fibromyalgia on the basis of clinical studies in the last decade they have been added to the limited evidence available at the time of the first version (2007). The basic recommendation is that the approach should not be exclusively pharmacological. The patient must be explained that there are many techniques to get better, which undoubtedly will discover the best in themselves. Topping the list the motion, Which at first it can be represented simply by performing normal home activities. And then, slowly, you can and should increase the minutes of activity, even walking up to half an hour, an hour later. Effective, then recommended by the panel of experts, including hydrotherapy, acupuncture and various relaxation techniques such as yoga, qigong, tai chi and mindfulness. There is however insufficient evidence at present to hypnotherapy, biofeedback and chiropractic. Great importance can have on the other hand the emotional support (typically a cognitive behavioral therapy) and diet . The power should not be underestimated because infuisce on the control of pain and inflammation.
What are the recommended drugs?
Along with relaxation techniques and movement, always suitable for everyone, from recommendations emerges a list of drugs considered useful to control pain, mood and quality of sleep, such as those made of amitriptyline, duloxetine, tramadol, cyclobenzaprine.
Then there are some substances on which the researchers do not fully agree. The list includes the NSAIDs (non-steroidal anti-inflammatory), antidepressants SSRIs (selective inhibitors of serotonin reuptake inhibitors), the S adenosyl mietonina, capsaicin (anti dolorifico). Thumbs down instead for the growth hormone, strong opioids, corticosteroids, sodium oxybate (indicated for narcolepsy) and homeopathy.
You can live with this disease?
The more the patient is informed and tries to adapt to the disease, the better his life. Sometimes even the fact to arrive at the diagnosis becomes liberating. How many people say to me: “At last I can now tell everyone to not be a hypochondriac.” And they tell me with a sense of lightness. Because understanding is the best therapy , by doctors and family members as well as the patients themselves. Everyone then is a story in itself, and should be treated with respect and sensitivity. Since this disease is not cured, but you can keep it at bay with the right therapies and better mental attitude. It is to accept that there are ups and downs, but we must not letfibromyalgia will take our lives. The more we indulge in pain, More pain makes her way and becomes dominant.