Only a person who feels a lot of pain and cannot find the right diagnosis (and therefore with the treatment to relieve the symptoms) knows the despair that is felt.
Therefore, on World Fibromyalgia Day, Jessica Borenstein, psychiatrist with a master's degree in psychoneuroimmunoendocrinology, and member of the Argentine Association for the Study of Pain, explains the central points that we must take into account when understanding what it is and how to approach it.
In "Is it fibromyalgia? A popular book to understand what this disease is about" (Editorial Sciens), his second book on the subject (which is soon to be published), faces the challenge of translating in a clear and simple way the complexity of what fibromyalgia (FM) implies.
Next, the central points he addresses in the book.
1- What is fibromyalgia?
"It is a rheumatological disease that is caused by a dysfunction at the level of the central nervous system," in which the brain and spinal cord present an alteration in the perception and processing of pain, "Borenstein explains to Clarín.
The specialist, who has been dedicated for years to the diagnosis and treatment of this disease, adds that "its main symptoms are the "generalized pains of more than three months of evolution, fatigue, sleep disturbances and cognitive disorders".
In this sense, the psychiatrist explains in her book that there may be "allodynia", that is, pain before stimuli that are not normally painful, such as the rubbing of the skin against a sheet; but also "hyperalgesia: an increased response to a stimulus that is already normally painful", such as a prick.
2- What are the causes of fibromyalgia?
When analyzing why FM can be suffered, the question arises as to whether it is a disease of unknown cause. "No," Borenstein says and affirms that it is multifactorial, that it is not the same. "There are many factors that are put into play for it to develop, both genetic and acquired."
However, he admits that although there may be genetic susceptibility, it is mainly environmental factors that determine the initiation and maintenance of FM, mainly dysregulated chronic stress, which appears as "the most studied factor and what is most observed in daily practice in this disease".
At the same time, it is important to emphasize that "it is not a disease with a high systemic inflammatory component, such as rheumatoid arthritis, although we do know that there is high neuroinflammation, and that therefore it does not respond to common analgesics".
It also stresses that it presents "high comorbidity with psychiatric symptoms of anxiety, depression and post-traumatic stress disorder (PTSD)."
An approach that takes into account mental health is also needed. Photo Shutterstock.
3- What is the link between stress and pain?
Borenstein acknowledges that the phrase "I'm stressed" is common, and not necessarily associated with illness. However, when you inquire with your patients about the time when the symptoms of FM appeared, a particularly stressful event usually arises, such as the death of a family member or job loss.
The doctor explains that the autonomic nervous system, which controls involuntary actions (for example, heartbeat or blood pressure) is divided into two branches: the sympathetic and the parasympathetic, composed mainly of the vagus nerve.
They suggest consulting with a rheumatologist in the first instance. Photo Shutterstock.
And he expands: "In patients with FM, the sympathetic nervous system is overactive and dysregulated. There is an excess of secreted substances (adrenaline and noradrenaline) that keep the nervous system alert and alarmed, and make it difficult to rest at night."
Why is this autonomic dysfunction triggered? The specialist mentions chronic stress. "This excited nervous system – on alert and alarm – caused by chronic stress, also generates, among other things, the pain so characteristic of fibromyalgia."
Borenstein urges that the complexity of the disease does not lead us to perceive it as something of the order of the alien: "We are all vulnerable to ignite our path of pain and make it dysfunctional in situations that exceed us and we can not face them correctly in a timely manner," he reflects.
4- Why is it usually classified as a rare disease?
"Although it is still common to hear it, FM is not a rare or uncommon disease," says the author, noting that it has a prevalence of between 2 and 6% in the world population. It mainly affects middle-aged women.
In addition, he assures that generalized pain is the fifth reason for consultation in the emergency wards, and that a quarter of rheumatology consultations are for symptoms linked to fibromyalgia.
Jessica Borenstein is a psychiatrist with a master's degree in psychoneuroimmunoendocrinology. Photo courtesy.
The interesting thing, for the specialist, is to understand why patients with this diagnosis feel that their pathology is rare and infrequent. "The main problem is that little is said about it in medical schools and specialties, and it is generally studied under the classic disease model, without being able to think about it in an integrated way," he says.
Meanwhile, he ponders that the complexity of FM "invites us to adapt to a new paradigm in medicine: the biopsychoneuroimmunoendocrine".
5- What is psychoimmunoendocrinology? (PNIE)
"In this difficult word is the key to understanding FM", enthuses the doctor since, as she says, it allows to change the perspective when thinking about pathologies, especially in contrast to a classic biological model, which conceives the cause-effect relationship as predominant.
"The PNIE approach offers us an integrated vision on how to understand pathologies in order to treat them. It is not a specialty, but a discipline, it is a look that crosses the specialties, "he says.
The PNIE is made up of four areas:
- Psycho: emotions, thoughts, behaviors.
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Neuro: neurotransmitters and neuropeptides
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Immuno: immune cells
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Endocrine: hormones
"I prefer to call it the BIO-PNIE network, because the way this network works will be determined by the personal history of the individual and his relationship with his environment: the environment and culture," he explains.
The doctor adheres to the idea of thinking of a "PNIE network", conceiving that when health is in the axis, but when there is PNIE dysfunction, it becomes a disease. "At the same time, it makes us think about diagnoses and treatments in a multidimensional way, and thus have more tools than the classic ones to address them," he says.
It is a disease with features of gender pathology, given the mental load to which women are subjected. Photo Shuttuerstock.
6- Is it an autoimmune disease?
There is still no consensus on this point. The doctor affirms that the basis of autoimmunity is being studied, since "there are long-standing indications", where it is observed that there are dysregulated immune and inflammatory cells.
"In 2021, a study (Goebel et al.) was published where, simply explained, antibodies from FM patients were injected into mice, which consequently developed symptoms of the disease within a few days. The same did not happen when they were injected with antibodies from healthy patients," he says.
"Despite this information, at present we cannot claim that it is an autoimmune disease. Further research is needed, as it is still unknown what the autoantibodies would be directed against; although it is believed that it towards neuronal proteins, "he says.
7- Why is it more frequent in women?
This is a reliable fact: statistics show that between 70 and 90% of patients are women.
"In everyday practice, we also notice an important female predominance, although there are men with FM, or more frequently with some other central sensitization process (for example, temporomandibular dysfunction, chronic fatigue syndrome, irritable bowel syndrome)," he says.
Borenstein recognizes that there are two types of explanations for this, the first, which he defines as "classic", is related to a greater genetic predisposition of women to have pictures related to the increase in stress-anxiety-depression, and in turn with hormonal issues.
"All this is true," she acknowledges, but adds another perspective: "I believe that, when it comes to understanding FM today, it is central to understand it as a disease with features of gender pathology, where the psychosocial role that was classically assigned to women intervenes, and that fortunately is changing."
The common denominator found is the "high mental load, where at some point the regulation system came to a peak, and that's where the painful process began."
8- How fibromyalgia is diagnosed
"Being able to diagnose a person with FM today is a complex job," he acknowledges.
"We currently do not have specific blood biomarkers, nor any imaging or histopathological study that is diagnostic in this disease. Therefore, it is important to carry out the necessary consultations, to gather tools that can guide us, "he postulates.
As he analyzes, tolerating uncertainty is often part of the path to diagnosis.
"For patients it is key to understand that not having an accurate diagnosis does not mean not being able to work or improve symptoms and quality of life. Many times the good response to general interventions, ends up indicating that we were facing a picture of FM, "he reassures.
In this sense, he gives an account of his experience in the office: "I receive daily patients with a diagnosis of FM who do not have it, and patients with whom we finally reached the diagnosis, but who had never been correctly studied or diagnosed," he summarizes.
Arriving at the diagnosis can take time, and the approach is multidisciplinary. Photo Shutterstock.
"From my point of view, it is central to dedramatize the diagnosis and start working with each person from what they can do, and convey that they will be able to improve. Understand that the symptoms are not rigid and that they can take another form and diminish until they disappear; It opens the way for precise work and many changes that will have to be made," he clarifies.
Regarding diagnostic methods, the fibromyalgia rapid detection tool (FIRST) stands out, an online screening technique created by one of the most recognized researchers regarding FM (including Dr. Serge Perrot), which serves to provide a first diagnostic orientation (in the event that 5 out of 6 answers are affirmative).
9- What specialty treats fibromyalgia?
You often hear, "I don't know which specialist I have to go to," Borenstein admits. For those patients with symptoms, but still without diagnosis, it is recommended in the first instance to consult a rheumatologist, who will indicate to do the first laboratory studies, magnetic resonance imaging and / or ultrasound.
"The main thing here is to rule out many differential diagnoses that are rheumatological. You could also start with medical clinic, psychoneuroimmunoendocrinology (although it is not a specialty) or pain medicine, "he adds.
He adds that he also suggests doing interviews with mental health professionals, such as a psychiatrist or psychotherapist. "We know that both our emotions, behaviors, chronic stress, anxiety and depression, are very much at stake in these pain pictures," he summarizes.
10- How is the treatment of fibromyalgia?
"The treatment of FM represents a great challenge, both for professionals and patients, given its high prevalence, its frequent accompanying pathologies (comorbidities), the constellation of different and fluctuating symptoms, often added to the partial efficacy of therapeutic modalities when they are not complemented," he says.
And he explains why the current approach is multidisciplinary: "Evidence-based medicine and daily practice indicate that, using a single tool (only medication, or only psychotherapy), the person will obtain a partial improvement, since there is no 100% effective therapy. There is no magic pill and we know that the best results are obtained by adding strategies."
To close, it summarizes the 5 axes to be addressed:
- Pharmacological treatment
- Psychotherapy and psychoeducation
- Physical exercise and movement
- Nutrition and supplementation
- Complementary medicines
"It is extremely relevant to work with habit modification. We have to convey that at this point we have a powerful tool to use, change and improve. Lifestyle Medicine (MEV) is getting more and more space, both in preventive medicine and in the treatment of chronic diseases," he concludes.
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