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Zola Budd-Pieterse - Former Olympic track and field competitor who broke the world record in the women's 5,000 meters twice, twice the women's winner at the World Cross Country Championships, diagnosed with RLS in 1996
As an athlete you face new challenges all the time, but I was at quite a loss about what to do when I began to experience quite uncomfortable sensations in my legs, giving me the sudden urge to move them, often at times when I wanted to relax or even sleep. At that time, I had never even heard of Restless Legs Syndrome or RLS, and since I was not sure how to describe the feelings, I just did not mention it to anyone. It took me many years of suffering in silence until I came across a pamphlet in my doctor’s surgery that seemed to describe my symptoms perfectly. I decided to talk to my doctor who obviously was aware of this condition too and soon, after a thorough examination, I was diagnosed. Getting a correct diagnosis is so important as I now know that RLS is often confounded with other medical conditions. I also learned that RLS is a common and treatable condition. I only wish I had known about it sooner.
From experience, the more you know about RLS, the better you can cope with the condition. Turning the pages will reveal, in simple terms, what RLS is, how it was first discovered, how it is diagnosed, and provide personal accounts from people living with RLS.
Zola Budd was born on 26 May 1966 in Bloemfontein, Free State, South Africa. At the age of 17, Zola broke the women's 5000m world record, and went on to break it again shortly after. Zola took the world by storm not only because of her unique talent, but also for unusually running her way to victory, bare foot. Throughout Zola’s career she won a great number of competitions, including twice being named the women’s winner of the World Cross Country Championships and gained the title of the second fastest woman in the world over 3,000m in 1992 when competing in the Olympics. Zola has since retired to Myrtle Beach, USA and is married to Mike Pieterse, and has three children.
Sue, John, Hans and Silvana are all people living with RLS. They share their stories below and help to provide insight into what it is like to live with RLS.
"I started getting these strange itching feeling inside my legs about four years ago. I would start to experience it late in the evening, often whilst I would be watching TV. It used to last one or two hours, and I would have to get up and walk about to get any kind of relief from the feeling." Silvana, Italy"
"I was 19 the first time I noticed the symptoms - I went to the cinema with my boyfriend and I couldn’t sit still as my legs were driving me mad, I just wanted to move them all the time. I vividly remember having to force them to keep still throughout the film. After that, I would experience it on and off until my thirties by which time I was married and had two children. And then it started to come, just a couple of times each week, so it didn’t really affect my life too much. As it started to become worse, I would try to work out what was causing it, but there was nothing really specific that I could pin point." Sue, UK
"Before receiving treatment, transatlantic flights would be almost unbearable because of the constant need to move my legs. Before going on a long-haul flight, I would worry about how I would cope with these burning, tingling sensations in my legs. I would always make sure to get a seat on the aisle and would wander up and down the plane for most of the flight. I knew that as soon as I settled back into my seat the torture would begin again." Hans, Germany
"The frequency of my symptoms increased until it became difficult to get a good night's sleep. As it progressed, it began to interfere with my everyday life, from sleeping, to travelling and even dinner with friends." Silvana, Italy
"I've had times where I've walked about in my house virtually half the night because I could not keep my legs still while in bed, practically falling asleep standing up. I have spent many a time like this." John, UK
"I went on the internet and found some information about Restless Legs Syndrome and then consulted a physician in London. He was very helpful and sympathetic and for the first time in forty years, I felt as though I wanted to burst into tears because somebody actually understood what I was feeling and had no doubt that I was truly suffering from this condition." Sue, UK
"When I was finally diagnosed, I found it so reassuring to hear that I wasn’t the only one with these strange sensations. Up until then, I didn’t even know that what I was experiencing was an actual condition called RLS." Silvana, Italy
"Often I'd go to bed with my husband, and just as I started to drift off to sleep my legs would start bothering me and moving constantly, like something was prodding me and making me jump. So my husband was often forced to go into the other bedroom to try and get some sleep, while I would get up and walk around. Sometimes it would ease and sometimes it didn't help at all – as soon as I got back in bed it would start again." Sue, UK
"There was a period when I was really struggling with RLS and my wife used to sit at the dinner table eating dinner, whilst I would be next to her standing up to eat. That’s not the way to have dinner. Socialising events that required sitting still for long periods were also a problem: going to a restaurant, concert or theatre, were all out of the question." John, UK
"As the symptoms increased over the years, I didn't know how to handle these strange sensations in my legs that were stopping me from sleeping. Eventually, in my fifties, it got to the stage where I had to give my job up because I was so tired from lack of sleep, I just couldn't keep going as I was." Sue, UK
From my experience, many of the Restless Legs Syndrome (RLS) patients are very surprised when they receive their diagnosis from their doctor or hear about RLS in the media for the first time after having suffered from their symptoms for many years. This is mainly because they have never heard of this condition before and, understandably, it can be quite disconcerting to be diagnosed with a condition you never knew existed.
Contrary to what some may think, RLS is not a new condition – RLS symptoms had actually already been described as early as the 17th century by Thomas Willis, an English physician.1 The characteristic symptoms such as 'creeping sensations', 'restlessness at night', an 'irrepressible desire to move when lying down' are all very vividly described in these first accounts from the 17th, 18th and 19th centuries. 1,2
RLS was first described scientifically by a Swedish professor: Professor Karl-Axel Ekbom. His thesis entitled: "Restless Legs, a Clinical Study of a Hitherto Overlooked Disease in the Legs" was where the description ‘Restless Legs’ was first coined. Professor Ekbom subsequently published a great deal of papers on RLS that have had a profound impact on research in the field of RLS. It is because of Ekbom’s discovery that RLS is also referred to as 'Ekbom disease'.
Despite the invaluable research of Professor Ekbom, it is only since the 1980s, that neurologists began to address the cause of the condition, indicating that RLS may be a result of a dysfunction of the dopaminergic system.1,3 The strongest evidence in support of this comes from pharmacological studies showing a significant improvement of symptoms with the administration of levodopa or dopamine agonists.1,4
The most recent breakthrough came in 2007, when study results showed an association of certain chromosomes with RLS, establishing a potential genetic link.5,6
"Now that I recall, my mother, from the age of 50, also experienced similar fizzing sensations in her legs" Silvana, Italy
Professor Mathis is Head of the Centre of Sleep Disorders at the University Hospital in Bern, Switzerland. His interest in RLS dates back to the early nineties when he treated RLS patients in an outpatient clinic. His interest was heightened in 1998 when he was invited to participate by the Swiss RLS patient association - the first one to be founded worldwide in 1985. He learned from the patients, how important it is to give them the feeling of being understood by the treating physician despite their indescribable symptoms. Joining a patient association will help the patient to understand the nature of the disorder and to articulate the individual complaints comprehensibly. Today, Professor Mathis is the President of the Swiss RLS patient association.
Did you know that if you have RLS you are not alone? In fact, it is a common neurological disorder affecting up to one in ten of the adult population at least occasionally,7 and roughly one-third of these individuals experience symptoms at least twice every week, causing moderate to severe distress.8 But what is RLS? In the medical world, we characterise it as an uncontrollable urge to move the legs that is usually accompanied or caused by uncomfortable and often painful sensations in the legs themselves.4,9 If these symptoms begin when sitting or lying down, are at least temporarily relieved by movement, and are at their worst during the evening or night,10 the physician has a very clear indication that he/she is dealing with a case of RLS. In most patients, these symptoms are associated with a very specific type of involuntary leg movements during sleep, referred to as periodic limb movements of sleep (PLMS),4 which may wake the patient. Considering all these characteristic symptoms of RLS, it is clear to see why falling asleep and staying asleep, or even just sitting still or relaxing, may be very difficult for people with RLS
Sleep disruption is just one of the many symptoms associated with RLS. Those with RLS may also experience daytime sleepiness, which makes it very difficult to function normally at work and during other daytime activities.8,9 Not surprisingly, the majority of RLS patients complain about a lack of energy, a tendency to feel depressed or low and have problems with concentration.
"Because of RLS, I don't have a regular sleep pattern like other people do. I sleep when I can and when the RLS starts, I don't sleep" John UK
Professor Winkelman has conducted research in RLS and Periodic Limb Movements of Sleep (PLMS), insomnia, sleep disorders in psychiatric patients, parasomnias, and the effects of psychotropic medications on sleep quality and architecture. He has also developed and directed multiple undergraduate, post-graduate and continuing medical education courses in the areas of sleep disorders and biological psychiatry.
Many patients with RLS symptoms come to me because they are having difficulty either falling or staying asleep. What they often do not mention at first, are the uncomfortable or painful sensations they have in their legs which compels them to move to get relief. This is partly because they may find it very difficult to describe these symptoms or often feel embarrassed about them because they do not know what to attribute them to. The symptoms patients present may be severe but typically they are very difficult to quantify except with vague terminology that some patients believe their doctors may regard as trivial. As a consequence, the patients often withhold key information making it difficult for their doctor to reach a correct diagnosis.
As the onset of RLS symptoms often coincide with the late afternoon or evening hours, there are often no physical signs during a daytime consultation, which can also be an obstacle to accurate diagnosis. Without evidence of symptoms during consultation and the difficulty for the patient to explain their condition, it’s understandable how descriptions of tiredness, low mood or limb pain, can often be confused with a number of other common and chronic conditions, such as circulatory problems, varicose veins, lower-back pain, anxiety or depression, insomnia or even arthritis
Some physicians are also still unaware of the condition or underestimate its potential impact on quality of life and so, unfortunately, RLS can go undiagnosed or misdiagnosed for long periods of time. In fact, results from a study conducted in the U.S.A. and Europe in a primary care setting show that only 13% of patients with RLS symptoms were accurately diagnosed. And patients who were misdiagnosed were at risk of receiving the wrong treatment while continuing to suffer from their RLS symptoms.
To overcome this gap in communication it is crucial for the patients to describe every symptom in as much detail as possible and for the physician to ask the right questions. Published literature has been reviewed by an international study group, who have established four simple diagnostic questions:
Focussing on these questions will help the physician to relate the sleep disturbance to the restless legs. He must recognise the significance of the characteristic feelings in the lower limbs (e.g. "like fizzing soda bubbles inside my legs" or a "burning, tingling sensation" or similar) and that they usually get worse in the evening or at night, and when at rest but are significantly relieved by moving the legs at least as long as the movement continues. This may necessitate leaving the bed at frequent intervals during the night to move around.
As part of the process of diagnosis, patients may be expected to undergo physical and neurological examinations as well as simple biochemical tests (e.g. checking iron levels in the blood) and, if necessary, other routine or specialist investigations (e.g. referral to a neurologist or to a sleep laboratory).
Once the correct diagnosis has been made, it is possible to treat the symptoms and help patients to enjoy their lives again.
"When I think back, over the years that I suffered, I never dreamt to go to my doctor. I thought, how can I go to my doctor and say that I’ve got fidgety legs, or I’ve got jerky knees. I felt too awkward to go to a doctor about that." John UK
"I suffered from RLS symptoms for about 15 years until I diagnosed myself. I’m a family physician and during one of my sleepless nights I was sorting through some paperwork and came across an article in a neurology magazine where the four main criteria for RLS where described. Suddenly it all became clearer. I had problems sleeping because of uncomfortable sensations in my legs which resulted in an irresistible urge to move. And these sensations only improved when I moved around. The description of RLS coincided exactly with what I was experiencing." Hans, Germany
Paul Stillman is a General Practitioner in Sussex, UK, and the senior partner in a busy two centre practice of eleven thousand patients. His interest in Restless Legs Syndrome started with a small audit of his own patients and has progressed to an ongoing, multi-national, prospective survey of the condition’s incidence, ease of diagnosis and impact on quality of life. Dr. Stillman is also currently involved in further research examining the impact of RLS on sleep and upon mood disturbance.
When a family doctor or neurologist suspects that a patient may have RLS, there are several factors that will inform his/her treatment decision: Firstly, the physician needs to determine whether the symptoms are caused by an underlying disorder, e.g. as a result of other conditions such as iron deficiency, anaemia, pregnancy and end-stage renal disease, or perhaps by certain medications the patient may be taking. In this case we speak of secondary RLS, which usually disappears once the underlying cause has been resolved.
In the case of primary (idiopathic) RLS however, symptoms usually worsen over time, occur more often, and rarely improve without treatment.
Once it has been established that the patient suffers from primary RLS, it is important to determine how severe and how frequent the symptoms are which will guide the treatment decision.
Based on clinical data and experience with different treatment regimens, medical experts have established guidelines for physicians to help them when making RLS treatment decisions.4,12 The experience of RLS symptoms varies from patient to patient and, as such, guideline recommendations have been split into two main categories based on the severity of RLS symptoms; one category looks at mild or intermittent symptoms, the other addresses moderate to severe RLS (i.e. experiencing symptoms at least twice a week or more).
Ilonka Eisensehr is a neurologist in private practice in Germany and also carries out research projects. In addition, she has a leading role in the Deutsche Restless Legs Vereinigung (German RLS society).
Dr. Eisensehr is a member of the European Sleep Research Society (ESRS), American Sleep Research Society (SRS), and the American Sleep Disorders Association (ASDA). At a national level, Dr. Eisensehr is a member of Deutsche Gesellschaft für Schlafforschung (DGSM), DGSM working group Motorik im Schlaf and Deutsche Gesellschaft für Klinische Neurophysiologie (DGKN).
For people with mild or intermittent RLS symptoms, certain lifestyle changes and activities to reduce or eliminate symptoms are usually recommended by medical guidelines.4,12,13 This may include advice to abstain from caffeine, nicotine, and alcohol as they can interfere with sleep, keeping regular bed and rise times and moderate exercise to help relieve the symptoms.4,12 In some cases, the patient may also be advised to take supplements to correct deficiencies in iron. Occasionally vitamin B 12, folate, and magnesium supplementation may also be required.
For people with moderate to severe cases of primary RLS, the physician may look into prescribing pharmacological options available for a symptomatic treatment. There are approved treatments for RLS that have been proven to be effective and well tolerated in clinical studies.
Levodopa was the first dopaminergic agent to be studied and to be found effective in treating RLS; however, its use may cause “augmentation”, which is the worsening of RLS symptoms due to pharmacological treatment, leading to an increase in overall RLS severity compared to the period of time before the patient started the treatment.12,14 Due to these limitations, dopamine agonists are today considered the preferred treatment for moderate to severe primary RLS15 based on their clinical and statistically significant improvement in symptoms of RLS, Periodic Limb Movements of Sleep (PLMS), or both.12,15,16,17 Within the dopamine agonist class, the non-ergot dopamine agonists are generally the first choice for most patients due to their more favourable side effect profile.4,12 Three non-ergot dopamine agonists are currently approved and available for use in Europe and the U.S.A.
Please speak to your neurologist or family doctor for more information.
"I have an exercise bike in my living room and around 2 or 3 o’clock in the morning I will go on this bike and peddle for maybe 20 minutes. My sons when they were at home, would come home at 1 or 2 o’clock in the morning and see me on this bike and were absolutely horrified to see what I had to do when everybody else was going to sleep or were asleep I’d be peddling away to try and get some relief from the restless legs."Sue, UK
"I found that making a few changes to my lifestyle helped me to manage my RLS symptoms better. For example, avoiding stimulants like caffeine and not doing excessive exercise before times of rest can improve the symptoms.2 Hans, Germany
"I discovered that activities that force you to concentrate can help take your mind off the discomfort. As a result, I enjoy model ship making and playing video games." Silvana, Italy
Prof. Chaudhuri is Consultant Neurologist and Professor in Neurology/Movement Disorders at the Institute of Psychiatry at King’s College and a recognised teacher and active researcher within the Guy’s, King’s and St Thomas’ School of Medicine, both London, UK. Prof. Chaudhuri is the author of 175 papers including reviews, book chapters, co-editor of three books on Parkinson’s disease and RLS and over 150 published peer-reviewed abstracts. He has contributed extensively to educational radio and television interviews, newspaper articles and videos.
A flock of sheep that leisurely pass by One after one; the sound of rain, and bees Murmuring; the fall of rivers, winds and seas, Smooth fields, white sheets of water, and pure sky;—
I've thought of all by turns, and still I lie Sleepless; and soon the small birds’ melodies Must hear, first utter’d from my orchard trees, And the first cuckoo’s melancholy cry.
Even thus last night, and two nights more I lay, And could not win thee, Sleep! by any stealth: So do not let me wear to-night away:
Without Thee what is all the morning’s wealth? Come, blesséd barrier between day and day, Dear mother of fresh thoughts and joyous health!
William Wordsworth (1770–1850)
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