«Never say you have fibromyalgia, because then they won’t listen to you»

Mar López Díaz-Robles says that her bones, head and knees hurt with little rest since she was seven years old. “When you are young you are pulling, but as the years go by, the pain gets tired, because it never stops, but it goes over and is accompanied by nausea, stomach ache, digestive problems,” describes a woman who has turned 53 and He has been on pilgrimage from consultation to consultation, trying to find relief.

Mar tells her life to fellow sufferers: Isabel Rico, Yolanda Lorenzo and others who do not want to give their names so that the disease does not worry them even more in their jobs. “There comes a time when you can’t do it anymore and you have to leave the job: I tried everything, but in the end I gave up,” says Mar while Yolanda nods, because she even started a legal battle to achieve a disability. “It is very difficult to be recognized, I had reports, I was with morphine patches, but it was not possible,” explains this worker in the cleaning sector that many days should give up taking part of the treatment to not fall asleep in her post of work.

For two weeks these women have been seen daily at the Fontenla Maristany, where they try a new brain stimulation therapy. The majority is in their fifties, but there are also much younger people affected, such as Paula, who comes almost staggering from pain and fatigue. He has a very bad day: «I have been like this since I was ten years old, they have sent me up to five times to the psychiatry office and it always tells me the same thing: ‘You have nothing mental, the strange thing is that with the pain you suffer you have some joyful day ‘-reports with half-open eyes-. Above all I feel sorry for my children, they approach me to the bed and ask me: ‘Are you never going to heal?’ The lack of knowledge about the disease causes doctors to derive them from one service to another and that the pharmacological treatment is very broad, although what weighs them the most is the incomprehension on the part of the doctors themselves: “One once told me: ‘Never say you have fibromyalgia or they will not listen to you.’ And it is true, they consider that you have depression or just a weak character, ”Mar complains. All her companions have suffered similar situations:“ I got to hear that fibromyalgia patients were drones, that we didn’t want to work, and that is why We took sleeping pills. What treatment can you expect from doctors or nurses who think that? Yolanda defines a problem she has been suffering for years: «They confuse the consequence of fibromyalgia with the cause». Mar complains. All her companions have suffered similar situations: «I got to hear that fibromyalgia patients were drones, that we didn’t want to work, and that’s why we took sleeping pills. What treatment can you expect from doctors or nurses who think that? Yolanda defines a problem she has been suffering for years: «They confuse the consequence of fibromyalgia with the cause». Mar complains. All her companions have suffered similar situations: «I got to hear that fibromyalgia patients were drones, that we didn’t want to work, and that’s why we took sleeping pills. What treatment can you expect from doctors or nurses who think that? Yolanda defines a problem she has been suffering for years: «They confuse the consequence of fibromyalgia with the cause».

Ferrol patients and the region, in a pioneering study

The health area collaborates with Affinor

THE VOICE

The health area of ​​Ferrol collaborates with Affinor (the association of fibromyalgia sufferers) and the University of Santiago so that in the city, specifically in the Fontenla Maristany, a new therapy is tried, the results of which will also serve to complete a study on the disease. This is a clinical trial of the Pain Research and Intervention Laboratory led by Professor María Teresa Carrillo in the Faculty of Psychology and developed in Vigo, A Guarda, Santiago and A Coruña, in addition to Ferrol, where 16 people participate.

Noelia Samartín is, together with Marina Pidal Miranda, the researchers who take care of the sick every day in Ferrol. They prepare a neoprene helmet that contains some transmitters of electric energy: «These are discharges that do not produce pain, but they do generate sensations», Noelia tells the participants who are very hopeful about the novelty, because their ailment is treated with an average of fifteen pills a day, including antidepressants, painkillers, opiates and anxiolytics, as well as sleeping pills.

«Sometimes we are placed, I almost have an accident because of that and I fall a lot», confesses one to whom the new therapy generates relaxation and a desire for a nap. “I leave relaxed, I hope it has good effects, because everything that is to take a pill less is a breakthrough, because right now we have nothing,” says Mar, who also sleeps long after each session, which are daily. To maintain a minimum level of health they must go to physiotherapists, yoga or gymnastics classes and psychologists, something that entails an additional cost and aggravates economic bleeding just when they have more problems to cope with the demands of their jobs and their payrolls diminish for it.

The participants in the study are at the equator of a treatment that is serving to collect data on the effects of long-term neurostimulation. “The objective is to see the effect they cause in a period of six months”, explains Noelia about a job in which a total of 130 people participate throughout Galicia.

The data will collect questions about which there are hardly any explanations, such as mood relapses when the season changes, that is, the meteosensitivity: «It may have to do with light levels, but that is something that is also studied and that affects the mood ”, says one of the researchers working in a therapy that patients see with enthusiasm. For the first time in many years.

130 people participate in the USC clinical trial, 16 of them are ferrolanas

In the middle of Sunday, Emerxencias de Galicia mobilized Ferrol firefighters for an urban fire in the neighborhood of Esteiro. It happened on the second floor of number 15 on Eduardo Pondal Street, where, probably because of a short circuit, the house’s freezer burned. When the troops appeared at home the flames had already been stifled with a fire extinguisher, firefighters proceeding to ventilate the house.

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