Purificación Titos suffered for years from Willis-Ekbom Syndrome, popularly known as Restless Legs Syndrome, without knowing it. She went to the doctor, but the doctor thought it was a matter of varicose veins and circulation problems and wrongly put her on treatment.
«I spent more than 20 years without being correctly diagnosed. I went to work without having slept practically any. I am a retired teacher and at that time I couldn’t sit still I spent my classes going around the children’s tables“I was super active in class,” she recalls.
«Luckily – he continues – I changed cities. I went to live in Granada and there my new cardiologist, when he saw me, told me that I did not have a problem with varicose veins and why I was taking that medication. When I described the symptoms to him, I could not keep my legs still because I felt like I was being bitten by ants“That’s when he referred me to a neurophysiologist. He started me on treatment and, from one day to the next, I started sleeping. It changed my life.”
What happened to Purificación “continues to happen to many people,” says Titos, president of the Spanish Restless Legs Syndrome Association (Aespi).
It is a sensory-motor neurological disorder with a “very high prevalence of 10% – other sources say 5 to 12%. And 90% of those affected do not know they have this syndrome. They are suffering in silence, without knowing what is happening to them, with depression and we have already had some related suicides. Because it is a very disabling syndrome that is not fully recognized,” explains Titos.
Chronic sleep deprivation causes fatigue and a decreased ability to concentrate during the day. This has a huge impact on both the professional and family life of these people, as well as their mood.
That is why it is so important to spread information about this disorder both at a societal and medical level. “Many primary care doctors are still unaware of this syndrome. More information is needed. I have contacted medical societies to promote talks with primary care doctors so that they learn to diagnose it because many say that it is due to nerves,” says the president of Aespi.
As for the symptomsis characterized by the urgent need to move the legs when resting. That is why for some people staying seated during a play, watching a movie or having a restful sleep is almost impossible because they have to be constantly changing position, moving their legs, walking…
However, restless legs syndrome should not be confused with “cramps or tics. In this sense, if a person can stop moving their leg if they are told, they do not have Restless Legs Syndrome,” explains the president of Aespi.
Causes
The causes are not known exactly. There is evidence of a hereditary predisposition to this disorder, but it may also be idiopathic (without a known cause).
It can also be due to a lack of iron, which is why many pregnant women suffer from this syndrome, “especially in the last trimester,” as Purificación points out; as well as to certain chronic diseases, such as peripheral neuropathy (damaged nerves) and kidney failure.
Furthermore, among other factors, it is believed that the origin of this syndrome may be related to a decrease in dopamine, a brain neurotransmitter necessary for the execution and coordination of movements.
Regarding treatment, it is directed at the cause that produces it. That is, if the patient has low iron, it is administered.
«We take medication that is not specific or is for Parkinson’s or epilepsy. There is very little research and in terms of research into medications against this syndrome It is hardly investigated“, says the president of Aespi.
To make known the daily life of these patients
►On the occasion of World Restless Legs Syndrome Day, the Spanish Restless Legs Syndrome Association held a key event yesterday in Santiago de Compostela to raise awareness about Willis-Ekbom Syndrome (RLS) with the help of renowned experts in the field of health and research. During the event, which was open to both members and non-members, talks and round tables were organised to delve deeper into the latest medical and psychological advances in this syndrome, as well as the importance of early diagnosis in primary care. In addition, they took advantage of the event to celebrate the twentieth anniversary of the association, which was established on 28 September 2004.