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Ana Jiménez Velilla
is tired of hearing about the 'Saint Vitus dance'. She has been dealing with what is known as restless legs syndrome - which is actually
Willis-Ekbom
disease - since she was 35 years old. She is now 20, and although she is a happy and optimistic person, easy to talk to and who eats life in bites, she is "very tired of the syndrome, because it gives rise to laughter, but it is not very funny. It happens to many people, even "It can affect you at a given moment and, with luck, you won't have it again. But when it lives with you... then it affects your life and your relationship with others," he confesses.
She speaks without drama, but tells a hard
story
, hers, one that changed radically during the pregnancy of her second son, David. "I started to have that strange feeling in my legs in the fourth month of pregnancy. At first you have no idea what is happening to you and you don't dare tell it to the
doctors
or those around you, because you don't even know how. explain it," he tells us, remembering the moment when he began to feel that urgent need to
move his legs
almost all the time. "It always happened to me in the evening, when I was sleeping or trying to rest on the couch. It was impossible to stay still and that, together with the normal discomfort of pregnancy, became exasperating. There came a time when I was afraid
to
get into the bed. I have always written a diary, since I was 12 years old, and I still don't dare to read the one from those months, because everything I said those days is super sad," he remembers.
Without having any idea what was happening to her, Ana spent the nights walking down the hallway of her house to alleviate the
discomfort
and trusted in the hot baths that her husband prepared for her and that "she would release ballast when she gave birth because it would disappear." On the contrary, that stayed with her forever and "it was even more exasperating."
Ana's is not an isolated case: "Around 1.5 million people suffer from this disease, almost 5% of the population," confirms Dr.
Óscar Larrosa,
clinical neurophysiologist and one of the few specialists in the field. In the 25 years that he has been treating the disease, hundreds of patients have visited his office, most of them women "between 27 and 35 years old, the age group where symptoms usually appear in a continuous or worrying manner," says the doctor. . Starting with
puberty
, it affects us two to three times more than men. "The most likely cause is menstrual
bleeding
," explains the expert. "From what is currently known, it is a disease with
genetic
traits that is caused by a problem in the passage of
iron
from the blood to the brain. Although it is not an essential factor, any blood loss lowers the levels of iron availability. even more so at the level of the
nervous system,
and women lose it once a month for much of their lives.
Pregnancy also increases the chances of suffering from the disease, confirms the doctor, in addition to other factors, such as "certain deficiency states and taking some medications. If you have an affected first-degree
relative
, there is up to seven times more chance of developing it in at some point in life, with or without anemia," adds Larrosa. It was the combination of factors that affected Ana: "My father had
restless legs syndrome,
but we didn't know it then. He woke up many mornings saying, 'My goodness, what a night I had, what cramps.' Now we know why it was. ", Add. Now she is also an expert because for years she has been in charge of the
Spanish Association of Restless Legs Syndrome (AESPI)
and she is also vice president of the
European Alliance Restless Leg Syndrome (EARLS).
"I learned about the work of the AESPI during a few days that I attended with a friend looking for answers. I heard very hard testimonies, but other hopeful ones, and I knew that I had to get involved and help as much as possible. I started as a delegate of the Valencian Community, because "I live in
Alicante
, and until today. These organizations do a fundamental job, it is the first place to go when you don't know where to go. The majority of those affected by the association are women, although there are also many men," he explains.
An unknown disease
Willis-Ekbom disease
remains
largely unknown; It has barely been investigated and its real existence has even been doubted. Ana was aware that she was suffering from it while she was looking through a magazine at the hairdresser, reading the testimony of another woman with the same symptoms. "I asked for a consultation with a
neurologist
, as they recommended, and I was very lucky, because she diagnosed me the first time; that is very rare," she adds. She had just named her need to move her legs at rest, sitting or lying down, which is associated with a sensation that is difficult to describe, very annoying and
unpleasant
, although it is not associated with pain, which appears especially in the late afternoon. and at night.
Discomfort
that only stops by stretching the legs, contracting them, shaking them, getting up and walking. But the
relief
lasts very little, only while they move, and the problem reappears when you are at rest again.
"It's an
unease
, as if something inside was recommending you. It unconsciously forces you to make a sudden movement, and it's true that this relieves it, but after a few seconds the same
sensation
returns again ," says Ana, who points out how That complicates any situation in everyday life, beyond sleeping in the same bed as your partner or sitting with company on a couch. "You
move
again and again, annoying anyone next to you. But it's much more complicated." For example? I ask him. "I love the cinema and the theater, but I can't go, because I get overwhelmed just thinking about having to
sit
for so long . Even getting on a plane is a problem: in the middle of a flight I have lifted up an entire row of seats with my hands. food trays on your knees. It's a rush, that's why you have an even worse time."
Lack
of understanding
doesn't help either. "It's not something you can tell, let's see how you explain it, and even when you do you have to face glances and giggles. Even my husband had a hard time accepting what was happening to me, he thought it was something
psychological
," says Ana. which took years to make public in his work. She now knows that keeping quiet is a mistake. "You should
tell it
in your immediate environment, so that people understand, for example, that if you meet for dinner you are going to get up from the table 20 times. And that you are always
exhausted
because you can't rest," she insists.
However, he recognizes that the circle of friends is greatly reduced, "because even if you tell everything that affects you in your daily life, it is something that is not understood. People downplay it, and that hurts. It is not a fatal disease , but be careful, it
incapacitates
you for many things and can even lead you to suicide, there is a very high percentage of affected people who consider it. I myself have had a suicide attempt; when you are sick, the
thread
between I stay and I go is very thin "he confesses. "It is a
chronic
disease
and although I am a very
optimistic
person , you have peaks, moments in which you are euphoric and others of absolute
depression
."
These have also made her face a
psychiatric
admission : "My husband is the nicest person I know, but he no longer knew what to do with me. It has been the worst experience of my life. Not sleeping for so many days in a row takes its toll and takes you to the limit, even if you are a 'restless ass', physical and mental
fatigue
can take a toll, it makes you incapable of anything. Also to work, rigid schedules become unbearable and it is impossible to concentrate, in some professions it is a danger," he confesses. "Those affected are awake for a long time due to the need to move or walk, and this disrupts their daytime performance, quality of life and, over time,
physical and
mental
health
," adds Dr. Larrosa.
In Ana's case, it has forced her to leave her job, despite working in an important hospital group where it was easier for her to be understood. "My mental health was at stake. There comes a time when you have to stop, because you are unable to take a step forward. Restless legs syndrome influences your mood a lot, a lot, not resting at night undermines you and makes you that during the day you are incapable of pulling yourself up.
The deterioration of the couple's relationship
"Trying to get those around you to support and understand you is not easy," says Dr. Larrea, who points out the problems it can cause in life as a couple. "Sometimes it is necessary to have
separate rooms
, to avoid friction and tension, because instead of one, both of them sleep poorly, which deteriorates the relationship. And it is good to take family members to the consultation so that the doctor can make them
understand
that they do not It is a minor or psychological problem, that the disease exists; it is fundamental," says the expert. "You find yourself very
alone , in the end, only you know how long the
night
can be
. It's your problem, you have to learn to live with it," Ana insists.
Among the
habits
that are harmful, Larrea points out "varying sleep
schedules
a lot (the ideal is for them to be as stable as possible),
alcohol
and excess
caffeine
(5 or more cups, especially after 5-6 in the morning). afternoon) and environmental
heat
, especially heat sources towards the legs (braziers, heaters, tight clothing...)".
On the other hand, it helps, especially in mild cases, " moderate physical
exercise
of the legs in the middle of the afternoon (never at night or intense or strenuous, because it worsens the situation), putting them in cold water for a while, showering the legs or massages." in the area. It is also advisable
to distract
the mind: conversations, crossword puzzles, painting, chess, ludo, cross stitch...", recommends the doctor. "Working with your hands without thinking about anything always helps you, at least temporarily:
crafts
, knitting, crochet... most women with this disease do something. No reading; it's impossible," confirms Ana, who entertains herself with the scrapbooking art, sometimes at three in the morning, falling asleep. "Maybe restless legs syndrome makes us creative," she laughs.
An invisible problem
In addition to his medical knowledge, close
contact
with patients over these years has meant that
Óscar Larrosa
has learned "many aspects of the disease that are not studied." Among others, the expert lists, "that certain high-calorie
foods
, although it is not clear which ones or why, worsen the problem; also that
infections
and inflammatory processes of any kind (colds, diarrhea, etc.) aggravate it, even if it does not appear in medical literature. And especially that one of the medications used to treat the disease in many cases makes it worse. "The
evidence
is very recent, but patients have been talking about it for a long time. We are talking about omeprazole for gastric acidity," warns the doctor, who concludes by pointing out again the
lack of understanding
not only in the environment, but also at a medical level: "Now people are talking about it, but those affected have been telling it for many years.