On 23 September we will celebrate World Restless Legs Day. September 23rd is the birthday of the Swedish neurologist Karl-Axel Ekbom, who gave the disease its name "Restless Legs Syndrome" in 1945. World Restless Legs Day goes back to the joint effort of European patient associations to have a world day to draw public attention to the widespread but still unknown disease and at the same time to honour the memory of Ekbom.
On the occasion of this year’s World Restless Legs Day, EARLS would like to draw special attention to the topic of RLS and pregnancy. Below, you will find an interview with Mauro Manconi, who was awarded with the this year's EFNA Gender Award for his research on RLS and pregnancy. This is accompanied by patient reports in which women from various European countries talk about their experiences with RLS during pregnancy.
Interview with Mauro Manconi, winner of EFNA’s Gender Award 2022, for his research on RLS and pregnancy.
Patient RLS and Pregnancy Stories
Many hours without sleep: Kerstin, Sweden
“Now again? This night too?” When the son who I was expecting was born, they disappeared. The crawls in the legs and the troubles were forgotten. Coincidences, I thought.
However, the coincidences with crawls reappeared when son number two was on his way. It was tiring nights, with many hours without sleep. By the time he was born, the creeps were gone and "a thing of the past." That was the case until I was pregnant with son number three.
The “ant crawls” in my legs, they must be symptoms of something, I thought. But I didn't raise the issue with anyone and thought of them as something related to the pregnancies.
After giving birth to our daughter, child number four, the creeps did not go away. Both she and the ant crawls kept me awake at night. The lack of sleep gave me headache and I got anxious as I didn't know how to cope with one more night without sleep.
The restlessness made it impossible to be still, but when my friends took me to the movie "Pretty woman" with Julia Roberts, I could relax. It took something very exciting on TV to concentrate and sit still.
My partner could sleep, he said, getting used to my kicks and "trotting" up and down out of bed. When it was most troublesome, it was impossible to read a book or solve a crossword, which were, and still are, among my major interests.
I looked for facts and help on the internet and found the website for Restless legs. A doctor, who was moderately engaged, prescribed Madopark (Levodopa and Benserazid). These tablets gave me symptoms already in the afternoons unless I sat down to rest.
Today, 46 years after the crawls in my legs began, I have taken Sifrol (Pramipexole) for ten years. I take 0.35 mg every day, divided into two sub-doses, and most of the time this medication helps. However, sometimes, despite these tablets, I get crawls in my arms, and restless arms are at least as unpleasant as restless legs.
To make up for lost night's sleep, I would love to rest for a while during the day. However, a nap is impossible because the leg crawls interfere almost immediately.
After the first I could not face the prospect of yet another such pregnancy: Anke, The Netherlands
Writing about RLS and pregnancy for me is a very loaded and emotional subject, which is why I do want to write about it. At the end of my studies I had, when stressed for example, more RLS sensations. In the evening I would have problems sitting down and chatting with people for example. This would abate from time to time, so things went up and down. I had no idea what this was.
Duting my pregnancy I also had varying degrees of RLS. Just after I gave birth, my mother told me she had heard about the RLS patient organisation, and that that might well be what I had. Then I finally got it. In the leaflets that I received I found a very good description of when during pregnancy the RLS was worse and when less.
But during the pregnancy: When visiting friends, I would sometimes just get up and go for a walk, because my entire body would feel extremely strained and uptight when I would try to sit down like the others. I always felt awkward about this because it might seem I did not enjoy their company. But just sitting down was an impossibility for me.
During the day, at work, I had to do presentations, and it was really difficult to not shake and kick my legs.
The last months of the pregnancy were the worst. The nights were very very long. Every now and then my legs were a true torture. I have spent so many nights on a small mattress in the baby room in order not to disturb my partner. At the end of the pregnancy we had to throw the mattress away, it was worn out. I read many many books during those nights, did yoga exercises. Usually I would finally fall asleep around 5 a.m. My colleagues warned me that the real work with babies would start after delivery, that I needed to be well rested by then. A company doctor thought it would be a good idea not to work for two weeks so that I cold get some rest. But with the broken nights anyway there was not much improvement.
When I learned more about RLS, and after many years found a doctor willing to try iron tablets on me, I found out that this partly solved the problem. It made me think how my pregnancy might have been…
Before the pregnancy I had told my partner that I would have either 0 or 2 children. He wanted to start with one. But after the first one I could not face the prospect of yet another such pregnancy.
My son is now 14 years old. I am very happy to have one beautiful son, who however does not have many cousins. I wished he had a bigger family. But not at the cost of the extreme torture I had to endure.
Quote: I have found that this very first recognition of the suffering during the pregnancy, so many years ago, means so much to me, so much more that I had realized.
I really was desperate: Laura, 32, The Netherlands
I have 2 daughters, aged 1.5 and 3. I have had RLS since my teens. I cannot remember not having it. My father also has severe RLS. He has tried everything possible, including alternative medicine. In the beginning my symptoms were less severe (and thankfully even today less severe than my father’s). Especially long trips in the car or going to the cinema were bad. Or in the evening watching TV. It got worse over the years. But still manageable.
During my first pregnancy it became worse as the pregnancy progressed. I always took the bus to go to work. This became impossible after some time. I could not stand because my belly was so heavy, and I could not sit because my legs drove me crazy. People must have thought …
At about the 6th month we decided to take a holiday before our daughter would be born. Four hours in the plane to Tenerife. I was in the aisle wiggling and jumping for four hours.
The nights were equally awful. I have walked about in the living room, waving with my arms (which were also affected) because lying down was impossible. But even walking was almost impossible with the weight of the baby. I really was desperate. In the end I would fall asleep in the early morning, on the couch. The only advice my doctor could give me was to take magnesium. … as if I had not tried that before.
After delivery the symptoms disappeared. It felt like a miracle. But unfortunately this lasted for a short while only. The sensations and shocks came back. Which was even worse with a small baby. I had almost no sleep. Walking about did not help.
In spite of all this we decided, after a few years, to have another baby. The pregnancy was even worse. It began earlier and became unbearable very soon. And this time it was also much worse in my arms. That is awful, a real torture. Walking of course does not give any relief there. My only hope was that it would go away after the delivery. But NO. Not this time. Since the second delivery RLS has stayed in my legs AND arms. I so much hope that one day I will be less troubled, and that I may one day get a normal life.
The gynaecologist did not understand what I was talking about: Lineke, 69, The Netherlands
As a small 3-year old girl I would come down to the living room because my legs acted funny. I could not stay in bed and kept walking up and down the stairs. My mother would give me hot chocolate en I was tugged in again. After years I was referred to a pediatrician. Diagnosis: Growing pains! When I was 13 the sensations suddenly disappeared. So growing pains indeed? No. When I was pregnant for the first time it came back with extreme intensity. And then I read an article about RLS, my situation all of a sudden had a name, I was not alone!
During my pregnancy I walked all night long, every night. I built all sorts of things on and around my bed to be able to stretch my legs, but nothing helped. The gynaecologist did not understand what I was talking about. But I hardly slept. After the delivery nothing changed, and I had a crying baby in addition. I took the moments when my little boy slept to also sleep a bit. I had to make sure I would fall asleep within 10 minutes; if not the RLS would kick in.
I am now 69 years old, and still have severe RLS. I have tried everything, medical and paramedical. In the end I took so many medicines I felt like a walking pharmacy. Then I was told to have a so-called drug holiday, stop all treatment at once. That was literally hell on earth. RLS like never before. It was the worst experience of my life, unbearable. I am still using many medicines. Every night I pray there would be a miracle drug and that RLS would be taken seriously.
I had never felt that uneasiness before: Purificación, Spain
I had never felt that uneasiness before. I was 25 years old and we wanted to have a child, after two years of marriage. It was 1979. Everything went very well at first, until, I don't remember if in the fourth or fifth month, everything got a little complicated. I used to work as a teacher, and since my pregnancy was perfect and I was very happy, I didn't have to stop.
However, I began to notice a restlessness, restlessness in my legs. Especially when, returning tired from the day at school, I wanted to rest, relax a little. And at bedtime, so I didn't sleep much.
I had no idea what was happening to me, my husband even less so. He constantly asked me to be still, to rest, but that was just what I couldn't do. As much as he wanted it. This is how my last months of pregnancy passed, precisely the worst, since my son was not born until mid-August.
That summer was unbearable, all day in the cold shower, and with a fan airing my legs. And I put up with it like that, because none of my doctors or my gynecologist knew what was happening to me. I do remember that, at some point, when they gave me some vitamins, iron, etc., I was somewhat better. But nobody related both things.
It came like this, the moment of delivery and everything disappeared!! To start over, three years later, with my second pregnancy. And now, RLS stayed with me forever.
At the age of 52, a cardiologist told me to go see a neurologist, that I had RLS. I did and since then, things have changed quite a bit for me. No one in my family had RLS.
I didn't know what was happening to me: Rosa, Spain
My name is Rosa and I have Restless Legs. My symptoms started when I was six months pregnant. The first time it happened to me was in a theater, I was in the center of a queue and it was impossible for me to get out. Then they came, the cinema, the meals, meetings with friends etc, and I always put myself in a corner to be able to stand up. I didn't know what was happening to me; I thought it was because of the pregnancy, when I had my first daughter it happened.
A few years later I started noticing it again and that's where my ordeal, at first it was little but I ended up in the neurologist. It made me some tests and diagnosed me with "Restless Legs". I put a treatment of Mirapexin and Rivotril and for years it was more or less right.
Two years ago I had seizures of twenty-five hours without being able to sleep and sit up, I ended up in the hospital where no matter how medication that I put on were not able to stop it, at that time. They had four crises in three months and I neither wanted nor could live so.
Already desperate I searched the internet for something that would help me, there I found AESPI, they helped me find a specialist neurologist on the subject and I decided to go. He told me that I was taking a lot of Mirapexin, and that I had rebound effect, that's why it was so bad. I had an ultrasound to quantify brain iron, which gave that I barely had iron in the dark part of my brain, they put intravenous iron with hardly any results, they put me back more and it went up a little but it did not have the desired effect, the crises disappeared with the new treatment but after more than a year of multiple analyzes and tests. I still have my legs restless.
It was a real martyrdom: Ana Maria, Spain
When did my ordeal begin? In 1982, when I was only twenty-three years old, I became pregnant with my first child, Virginia. So young and inexperienced that I did not know what was happening to me and with an urgent need to move. Of walking. to get up of not being able to sit still when what she really needed was to rest.
My husband told me: maybe you go to bed without being sleepy. The midwife told me: it's cramps. It was a real martyrdom. When my daughter was born, the need to move and not stop stopped a little, possibly because it wouldn't let me stop still.
When Virginia was almost 3 years old, I became pregnant with my second daughter, Tania. And here, the ordeal returned. When he was born, just like the first time, the need to move stopped, since I hardly even had time to rest.
In addition to the girls, I had to take care of the house, and then when the little girl was already five years old, I started working again. Since they were more independent now, and she had times when she could rest a bit, it all started again. I couldn't stop, I couldn't sleep and worst of all, no one understood me. The misunderstanding, how difficult it is to explain something, that nobody understands, and they didn't even stop to listen to what he had to say.
I spent entire nights without sleeping, standing in the kitchen, reading, placing, rearranging cabinets, from one bed to another, with the pillow in tow. Any. I couldn't rest. While I was entertained everything was fine, but when I tried to rest, my sleepless nights began. And so, for years.
When my daughters were older, they informed themselves, they searched the internet, they saw what happened to more people and finally, they found Doctor G. B., and the Association. And that's where finally, someone understood me. Someone knew how to tell me what was happening, where they informed me, where they did tests, trials ... and where I discovered that although there is no cure, there is medication that can alleviate my suffering. It was my salvation.
There are days and times when the need to move still arises, but with the Neupro patch, I can say that I lead a normal life, I rest, and I sleep, and above all, in which I can do things that I like, sew, read, study, and write. The days of exhaustion after going to work without sleeping are over.
The condition was so terrible that I thought about terminating the pregnancy: Marie-Luise, 62, Germany
In my first pregnancy (in 2000), these unpleasant feelings in my legs started to appear during the first trimester at night, accompanied by an irrepressible urge to move. I wanted to sleep, but that was out of the question.
I started looking through the literature and found what I was looking for in one of my books. It was simply called “Women's Book” and dealt with all kinds of topics. There was a small paragraph in it that described my complaints quite well and gave these complaints the name "Anxietas Tibirarum". This was a first relief that my sensations obviously affected several women.
At the next appointment with my gynaecologist, I talked to him about the issue, but for him the symptom description was also completely new. Fortunately, he took my descriptions very seriously and used his possibilities as a qualified gynaecologist to gather information. We then exchanged information at the next check-up visits about who was able to gather which information.
Meanwhile, the quality of sleep had worsened again. I circled the bed until I fell down from tiredness and then stood upright again after 20 minutes at the latest and continued to circle the bed. The movement gave a little relief. Catching up on sleep during the day only worked to a certain extent.
The condition was so terrible that I thought about terminating the pregnancy. However, I was sure that this would not get rid of the disease, because I had known the symptoms in a mild form since childhood, especially on warm nights. Then I constantly turned the blanket so that the slightly cooler side was down.
Through the exchange with the gynaecologist, it was finally clear that a neurologist had to be consulted. The recommended neurologist was a stroke of luck, because he knew the disease, which was now named Restless Legs Syndrome (abbreviated to RLS). He also told me that there was an RLS patient association in Munich.
The neurologist then showed me that RLS is treated with L-dopa or dopamine agonists. Since it was not clear if these medications were in any way damaging to the genetic make-up, they were out of the question for me (at this point I would like to refer to the Contergan problem).
I told a friend of mine, an anaesthetist, about my situation and here, too, a stroke of luck occurred, because years ago he had been involved in a study with Professor T. which showed that opiates also help to get the symptoms under control. Armed with this knowledge, I went back to the neurologist's office and after studying the possible medications in the "Red List" again, I decided that I would take the opioid Tramadol. I discussed it with my gynaecologist, who sent me to a pain therapist for a final assessment. I will never forget the words I heard from the anaesthetist and pain therapist I visited: "Don't do that to your child!” That made me feel deeply insecure at first! Two pain therapists and two completely contradictory statements.
After careful consideration, I decided in favour of Tramadol, because the side effects and risks were quite clear, based on decades of experience alone. This meant that there was a risk of respiratory depression of the child at birth, but the probability was very low. Furthermore, I paid a lot of attention to my digestion and ate a lot of fibre.
The pregnancy went quite smoothly, even though at 40 I was one of the high-risk pregnancies. Due to the circumstances, I decided to give birth at the University Hospital in Ulm. It was going to be a "long" delivery, the time from the first contractions to the actual birth was considerable. So, the doctors suggested a caesarean section. But I really wanted a so-called spontaneous birth (I always smile about this term, because nothing about the delivery was spontaneous). The spontaneous birth was a success, and the baby was immediately checked for " heart and kidneys". Marius was healthy and has remained so until today, at the age of 21.
It was only years after the birth that my mother told me that she also had severe RLS symptoms during her first pregnancy. She then sat down at night at the old treadle sewing machines and often and often slept at her desk during the day at her office job. Very remarkably, she often said that she was so glad that her gynaecologist was strictly against any medication during pregnancy, because at that time Contergan was available as a sleeping pill over the counter at the pharmacy. My mother's next 4 pregnancies then proceeded largely without RLS symptoms. It wasn't until she was over 80 that she developed RLS that absolutely had to be treated.
As I did not want a single child (also because of the painful loss of my youngest sister at the age of 23 to leukaemia) and I now knew that the horror of RLS could be controlled with Tramadol, I also gave birth to a second completely healthy son at the age of 43. Here, too, the birth was normal under the circumstances. The biggest problem was the size and weight of the child with a small pelvis. Niklas weighed a proud 4450 grams.
Finally, I would like to comment on a statement made at a lecture on RLS and pregnancy. The lecture took place at a general meeting of the association and presented an interim status of a large study of RLS and pregnancies. The head of the study was highly impressed by the decision of some of the study participants to terminate their pregnancies. For me, these decisions are quite understandable if one is not shown a way to get the most severe RLS symptoms under control. It is still true: sleep deprivation is a torture!
Despite the pain, I would not want to miss any of my four children: Herta, 67, Germany
My first pregnancy was 44 years ago, but that was when RLS symptoms first appeared. At first, I hardly noticed it, I often wore Perlon tights at that time, which I could no longer stand in the evening. But I realised that something was wrong when we were invited to a friend's house in the evening. Everyone was sitting comfortably in the round, and I could no longer sit. I went to the toilet even though I didn't have to, I helped to clear the table, and so on. At that time, I didn't know anything about RLS.
After the pregnancy, it got a bit better, but I had to take off my tights quite soon in the evening. With each pregnancy, four in total, the symptoms came back and became more severe.
During the last pregnancy, we were travelling in France. We slept in a caravan, and I walked around in the awning and on the campsite at night. A doctor who was also there at this event noticed this and he recommended that I put my legs in cold water. That also helped as long as the legs were in the water.
It was only after the pregnancies that I read a small article about RLS, and I realised my condition and that there was a name for it. Then we realised that my mother also suffered from RLS. And we were both given medication.
In a lecture it was once said that RLS symptoms increase with every pregnancy. Unfortunately, that is true. But I still don't want to miss any of my four children. Unfortunately, I have passed it on to one daughter.
I realised that women who had RLS during pregnancy get it back later: Regina, 79, Germany
My two pregnancies went very differently. With my first pregnancy I was 24 years old. I suffered from restless legs and severe itching on my upper body from about the 18th week and until after delivery. But always only in the evening when the body was resting. After taking off the clothes, the itching often became unbearable. Only cooling gels helped then. I didn't go to the doctor because I thought it was related to the pregnancy and that I would feel better after giving birth. And so it was, the itching went away, but I kept the Restless Legs. I have third generation inherited RLS. I got it from my father and he got it from his mother. I have suffered from this condition since I was 7 years old. It was a bad time without medication for 47 years.
In my second pregnancy, my RLS increased and also appeared in a different form. It was hard to bear without medication. It started in the evening in both knees with a strong prickling sensation and after about 10 minutes it turned into a deep, severe pain. Later, this pain also appeared in both elbows. I often fell asleep only in the early morning and that too only out of exhaustion. Later I realised that I had also inherited this particular form of RLS from my grandmother.
I could relieve this pain only with warmth and by applying pressure to my belly, which was no longer possible in the later stages of pregnancy. After giving birth, the symptoms subsided somewhat, and as I got older I noticed that many women who had RLS in pregnancy get it again later in the menopause. I could observe in myself that the RLS increased with the hormonal change. I could often only fall asleep after a hot footbath. This is still the case today, because without a hot footbath I can't get any rest in my arms and legs.
I diagnosed myself with the help of a newspaper article andI have also read that women with several pregnancies often have a chronic course of RLS. I have been suffering from RLS for 72 years now and have been taking medication since 1996, which helps me very well. I would no longer live without medication.
The suffering became unbearable, even to the point of crying: Emilie, France
My RLS started in the third trimester of my first pregnancy. I couldn't fall asleep at night, my legs were "bothering" me. When you add the big belly, it became mentally exhausting. The midwife who followed me said that I was impatient. The first treatments were homeopathy, then Daflon. Without much effect. I then continued to feel these impatiences in the evening at bedtime, at night it woke me up, or when sitting for a long time (during events, evenings, journeys).
The suffering became more severe during my second pregnancy until it became unbearable, to the point of crying. I remember the long evenings when I would pace around my dining room hoping it would pass, always with my big belly. Only the cold could soothe me (I would lie down on the floor).
Then I did some research on the internet and consulted my new General Practioner and at the same time we both thought about RLS. He referred me to an angiologist who prescribed class II compression stockings, and to a neurologist who, after examination, confirmed RLS and prescribed Adartrel. I took this treatment for 2 years. Adartrel in the spring/summer and compression stockings the rest of the year. My symptoms decreased and became more manageable.
I managed to stop the treatment and can now soothe them by putting cold water on my legs at the time of the attacks. Today I still have symptoms but to a lesser extent. They are more likely to occur in the evening when I fall asleep and sometimes if I wake up at night. I always look for a cool place in my bed. Tight clothes and sitting for a long time can also trigger them. I then move to make them go away. They can also be triggered by travelling by car, train or plane. I have also noticed that they are triggered when I let go of the pressure after an intense work period of several months, when I long for some rest ... but I can't fall asleep!