Testimonials about fibromyalgia

In a conversation with a person who has been diagnosed with fibromyalgia, one understands the need to address this disease on a psychological level from the first diagnosis. What questions usually come after this approach? What are the first months of living with the disease like?

This article reflects the voice of two testimonies about fibromyalgia, with the aim of having a more intimate idea of ​​this condition.. We address the questions, a priori without answers, answered by people with fibromyalgia, with the intention of helping others to rebuild their lives based on the diagnosis and memory.

What is fibromyalgia

In 1992, fibromyalgia was recognized by the WHO as a new clinical entity, called ‘fibromyalgia syndrome’, which was incorporated into the international classification of diseases. It is estimated that it affects nearly 900,000 people in Spain, as indicated by the Spanish Society of Rheumatology (EPISER), in its study titled: Prevalence and impact of rheumatic diseases in the Spanish adult population.

Chronic and widespread musculoskeletal pain is the main characteristic of this disease. According to information compiled in a popular article by International Journal of Molecular Sciences. Other symptoms of fibromyalgia are: muscle and joint stiffness, insomnia, fatigue, mood disorders, cognitive dysfunction, anxiety, depression, sensitivity.

The conditions that occur in fibromyalgia present typical symptoms and signs of a multifactorial etiopathogenesis, in which genetic and epigenetic factors are combined. This causes a persistent alteration of the system of self-regulation and control of pain and stress in the central nervous system, as indicated in an article in the journal Clínica y Salud.

The diagnosis is made based on the symptoms that each person presents. There are, at the moment, no specific tests through which this disease can be reflected. This causes the time until receiving the diagnosis to be delayed.

In its treatment, a multidisciplinary approach is essential as opposed to a traditional biomedical approach, given the enormous complexity that these patients usually present.

Below we will learn about two testimonies about fibromyalgia, in order to have a better idea of ​​what it is like to live with this disease. It should be noted that, in order to preserve the anonymity of the patients, personal names are fictitious.

Testimony 1: Andrea

Andrea’s experience is told in first person. She will tell us in her own voice what it is like to live with fibromyalgia.

The first symptoms

I always feel tired, sleepy, cold. Belly pains and headaches are now part of me. I am constantly accompanied by intense pain in my knees, muscles (the sores that never go away), punctures, cramps and numerous mistakes.

Pain and worsening of symptoms

can’t stand. You don’t want to live like this. Each day presents itself the same as the previous one. It’s not worth spending another 24 hours hating your body because it hurts in an unbearable, insufferable way…, although the latter is paradoxical.

It doesn’t matter that you haven’t moved that day, that you haven’t made any extra effort. Just the act of getting your body out of bed is already tiring, because it is rigid and hurts. Everything falls out of your hands, everything is heavy, everything is tiring, cutting, holding dishes, drying your hair… We don’t talk about driving and working better.

It doesn’t matter if you sleep, if you are standing or sitting. The sofa is not comfortable, nor is the bed. All clothes are uncomfortable, everything is excess, everything costs. Since you’re dead in pain, you can’t be with people. It doesn’t matter if it’s a short time or a long time, you measure everything (how many people I’m going to have to interact with like this, where and how I’m going to be, -I’m not going to be able to- that’s what you think). So, You stop doing the social life that you have always liked.

You don’t want to talk to anyone about this either, no one understands it. All the tests that have been sent to you looking for an autoimmune disease that explains the symptoms have been negative. And speaking, furthermore, initially means complaining and you are not the only person who has problems.

You can’t find the words to communicate. Suddenly, the word glossary is not on your mind. You go blank. It is difficult to comment on something, intervene in a conversation, give an opinion. Mistakes become more constant and have greater consequences. This sinks you.

The symptoms get worse, there are no longer good days when you have some energy. It seems that they have bitten you, stuck glass, that these sensations are never going to go away, nor the soreness, nor the flu. Sometimes you hope it’s a temporary thing, but it doesn’t stop. Nobody can touch you.

You become hypersensitive to light, noise and people’s comments, it’s extreme. You can’t fall asleep, because it hurts no matter how tired you feel. The pain wakes you up at night. The sleep has not been restful. No medication does anything. And so you reach the highest peak.

Diagnosis, struggle and acceptance of fibromyalgia

You visit the pain unit hoping to get the magic pill. or that they send you physical therapy sessions for life. With my history of symptoms and repertoire of tests and confirming more than 18 points, they suspect this disease, fibromyalgia; which is commonly unknown and has no cure.

The internal medicine doctor confirms the diagnosis. This time the immunity analysis shows the antibodies. I am facing the diagnosis of a chronic illness. What harsh words!

I go to a physiotherapist. He advises me to treat myself at different levels, since this disease affects different areas of the person. The professional encourages me to stop being in the dark. He asks me what has influenced how I have dealt with my diagnosis. A few weeks later I understood that the change would have to start with me.

Treatments must be tailored to each person. For them to work, they must be very personal and involve first changing, modifying or eradicating small actions or gestures that we perform on a daily basis: not seeing the complete puzzle, going piece by piece, rearranging it and without being in a hurry.

As for tasks, you have to prioritize, leave something undone. We must learn to prevent and foresee without getting overwhelmed, leaving tasks planned or completed, but avoiding tension at all costs. This is very difficult to achieve.

In the personal-social sphere, it is important to work on emotional intelligence: sadness, joy, fear, anguish. Stopping being afraid becomes a challenge and a fight against the disease.

In addition to our mind, we have to balance our body. As for food, it is very personal, each person must know themselves and know what they cannot eat, what is heavy and can cause chronic diarrhea.

You have to do physical exercise. And here we find something incoherent according to the pattern of pain and disability we suffer. Attending a gym, a group class and practicing some sport seems comparable to climbing Everest… How difficult it is to take the first step. You have to do it, be consistent and endure pain at the beginning.

In my particular case, the qigong either chi kunga variety of techniques usually related to traditional Chinese medicine, which include the mind, breathing and physical exercise. It has helped me reconcile with my body; She was starting to hate him, as he only offered me pain.

When you manage to stand up to the disease, Everyday activities cost less. You can be anywhere, whether it’s uncomfortable or not, and talk to anyone without being afraid of everything turning into complaints. You can, little by little, recover your body again.

Testimony 2: Luisa

We will know Luisa’s experience, mainly, through the story of another person who knows her. But also, we can read her voice at certain moments in the narrative.

Fibromyalgia, a new travel companion

Luisa’s (not her real name) diagnosis begins with her medical history. Most of the visits in recent years were due to extreme fatigue, physical pain or tendinitis of all kinds in wrists, knees, feet. But for everything there was an apparent cause: “you are tired because you have insomnia or your body hurts because you have a physical job.” It never occurred to her that all of this could be related to a single reason.

In itself, the diagnostic process can be said to have been a coincidence. During the COVID-19 quarantine, Luisa continued working, since her work sector was considered ‘essential personnel’. They were a few months of quite a workload and her wrist began to hurt a lot. The family doctor diagnosed her with tendonitis, like she had many times before. Although The pain did not disappear with medication and rest, no apparent cause was seen in the tests; so they referred her to traumatology.

During the two months that he waited for the doctor’s visit at the hospital, the pain in his wrist did not decrease, but rather a very acute discomfort in his knee was added, which prevented him from walking normally. In turn, he felt more pain in his hip at night when sleeping, despite having changed the mattress, believing that that was what affected him.

Other pain arose, such as jaw pain, which he associated with the masks, or headache, present for as long as he can remember and inherited from a family with a long history of migraines.

When the day of the appointment with the traumatologist arrived, Luisa took the opportunity to talk to him about all these pains, since she had once mentioned it to her family doctor, but her hypothesis alluded to the woman’s clumsiness, who perhaps was giving hits there. The traumatologist was the one who related his symptoms to fibromyalgia and referred the consultation to the rheumatology service..

After several meetings, tests, questionnaires and analyzes for 2 years, including ruling out another pathology, the rheumatologist found fibromyalgia, just a year ago.

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