Frequently Asked Questions

 
 
General Questions
  What are the criteria that assist in a RLS diagnosis?
  What are some other supportive clinical features of RLS?
  'Insomnia?'...Could it be RLS instead?
  Do I need a laboratory test to confirm a diagnosis of RLS?
  Are there any effective treatments for RLS?
  What non-drug treatments are available for RLS?
  What are some useful coping strategies for RLS?
  Is RLS Hereditary?
  What is the cause of RLS?
  Is it possible to have RLS in other parts of my body?
  Can you have RLS whilst asleep?
  Are there any substances which should be avoided?
  How common is RLS?
  Is there an Australian support group?
  How can I find a doctor who understands RLS?
 

WHAT ARE THE CRITERIA THAT ASSIST IN A RLS DIAGNOSIS?

 

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WHAT ARE SOME OTHER SUPPORTIVE CLINICAL FEATURES OF RLS?

Presence of these features may help resolve any diagnostic uncertainty:

  1. Periodic limb movements (during wakefulness or sleep). These jerking movements occur in approximately 80% of people with RLS
     
  2. Family history of RLS. The prevalence of RLS, among first-degree relatives of people with the condition is three to five times greater than in people in the normal population (see FAQ "Is RLS Hereditary?")
     
  3. Positive response to dopaminergic therapy (see FAQ "Are there any effective treatments for RLS?")
     
  4. Sleep disturbance is a common complaint in more affected patients. This may be in the form of delayed onset of sleep; arousals during sleep; or both
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'INSOMNIA?'...COULD IT BE RLS INSTEAD?

Those with severe symptoms describe RLS as a torturer that has taken over their lives! The severity of symptoms range from annoying and infrequent to distressing and daily.
 
Fortunately most experience RLS in a milder form, but even in this form, it can cause chronic sleep loss. Many people would not recognise this subtle form as RLS. They find it difficult to relax and move into that calm, sleepy state needed to fall asleep. This restless, slightly tense state, can make the mind become active, causing sleep to be elusive.  

Dr Ralph Pascualy, MD, Medical Advisory Board member for the US RLS Foundation, believes that of all patients presenting with insomnia, at least 13.3% are victims of RLS or Periodic Limb Movements in Sleep (PLMS). He also suspects that 6.9% of patients complaining of excessive daytime sleepiness (EDS) may also be similarly affected.

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DO I NEED A LABORATORY TEST TO CONFIRM A DIAGNOSIS OF RLS?

No laboratory test exists that can confirm your diagnosis of RLS and no physical abnormalities are known to be associated with RLS. However, a thorough examination, including some laboratory testing, can reveal temporary disorders, such as iron deficiency, that may be associated with RLS.

A low-normal serum ferritin level (<45-50 mcg/L) is reportedly related to increased severity of RLS, and even in patients with normal haemoglobin, levels may be associated with increased risk of the occurrence of RLS. Measurement of serum ferritin level and percent iron saturation is now considered part of the standard medical evaluation for RLS.

After ruling out other medical conditions as the cause of your symptoms, your doctor can make the diagnosis of RLS by listening to your description of the sensations. Some people (including those with Periodic Limb Movements in Sleep and without the abnormal limb sensations of RLS) will require an overnight testing of sleep to determine other causes of the sleep disturbance.

Some researchers have used the SIT test (suggested immobilisation test), devised to study the effects of immobility on people with RLS. Subjects must remain still for one hour while sitting on a bed with their legs outstretched. This is impractical for general use, as the timing must be when the person would normally experience symptoms, which is usually at night.

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ARE THERE ANY EFFECTIVE TREATMENTS FOR RLS?

 

Since the early 1990s researchers have made enormous advances in the understanding of RLS, which in turn has resulted in much better treatment and control of the condition. Treatment is considered according to the severity of symptoms and the loss of quality of life. Moderate to severe sufferers who experience symptoms regularly, may need to have a doctor/ pharmacist advise them on drug therapy. If your symptoms are mild and intermittent, then you may find that low-risk therapies and strategies are most appropriate for you.

Commonly used ‘low-risk’ strategies include:

 

  • Very hot, or less commonly, very cold baths can be very relieving. Some find a hot shower effective too. Others use hot and cold packs
  • Physical activity, particularly involving the limbs, often helps if done just before bedtime. Stretching exercises also seem to be useful. Alternatively, excessive exercise may increase symptoms.
  • Massage, vibrating devices and equipment that gives transcutaneous electrical nerve stimulation, provide temporary relief for some, acting as a counter-stimulus
  • Some perform acupressure, and practice relaxation techniques (biofeedback, meditation, or yoga)
  • Engrossing mental activity can delay or eliminate symptoms. Reading a gripping novel, performing intricate needlework, or playing video games helps during times that you must stay seated, such as when you are travelling

Substances to avoid:

  • Alcohol can be a trigger for many
  • Caffeine in all its forms, including coffee, cola drinks and cough syrups
  • Nicotine, especially near bedtime
  • Most of the following medications: antihistamines, (including cold and sinus preparations); antidepressants/ tranquilisers; calcium-channel blockers (used to treat high blood pressure and heart conditions); anti-nausea agents; antipsychotics

If you need to take any of these medications, discuss with your doctor/ pharmacist the possibility of acceptable alternatives. Be sure to inform your doctor/ pharmacist about all the medications you are taking, including herbal and over the counter preparations.

Nutritional deficiencies:

Correction of the body’s nutritional state has often been reported to decrease symptoms. The role of iron levels has been well studied and proved to be significant. Iron plays an important role in the processing of dopamine in the brain, so low iron might disable the dopamine system. Many studies have indicated that RLS is likely to be caused by some malfunction in the processing of dopamine, so iron is a vital link. The addition of vitamin C helps with the absorption of iron. (More on iron in “Non-drug treatment section”.)

Some studies on magnesium have suggested it may also play a significant role too. Folate, vitamin B and E have some reports that they may be beneficial but there are no clinical studies to validate these reports.

Warning: Because the use of even moderate amounts of some minerals (such as iron, magnesium, potassium, and calcium) can impair your body's ability to use other minerals, or can cause toxicity, you should use mineral supplements only on the advice of your healthcare provider.

Drug therapy for RLS:

For specific details on drug therapy available in Australia, go to:
Treatments for RLS

 

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WHAT NON-DRUG TREATMENTS ARE AVAILABLE FOR RLS?

Many people with RLS understandably feel reluctant, to choose the drug pathway, for various reasons. Their symptoms may be mild, unpredictable, or limited to particular confining situations such as in the theatre or on an airplane. Others have an aversion to drug therapy and prefer to try to find relief in complementary medicine.

First, it is a good idea to put into practice the ‘low-risk’ strategies described in this web site’s section; What are some useful coping strategies for RLS?

Many people have tried a range of alternatives: acupuncture, therapeutic massage, hypnotherapy, reflexology, yoga and various herbs, vitamin and mineral ‘remedies’. Reports show that some things work for some people but not for others, and often offer only temporary relief.

Nevertheless, genuine reports show some positive results of significant relief.

With the exception of the role of iron in this condition, there are no scientific studies to verify the efficacy of any of these alternatives therapies.

Reports in 1945, from the Swedish study by Dr Karl Ekbom, stressed the importance of adequate iron levels in people with RLS. More recent research by Drs Richard Allen and Christopher Earley of John Hopkins University in the US has confirmed these findings. They have documented central iron deficiency in patients with RLS through MRI and cerebrospinal fluid (CSF) studies. They suggest that since iron plays an important role in the processing of dopamine in the brain, then low iron might disable the dopamine system.

Further studies by Dr Connor Ph.D. at the Harvard Brain Tissue Resource Centre have revealed more about the iron / RLS connection. Their findings seem to show that there is an insufficiency of a specific receptor for iron transport … one that signals the RLS brain that it has enough iron, when in fact it has little or virtually no iron at all.

Studies have shown that a serum ferritin concentration, lower than 45 to 50 mcg/L, has been associated with increased severity of RLS. It is recommended that Vitamin C be taken with each dose of ferrous sulphate to enhance absorption and that each dose should be taken about an hour before a meal or two hours after. You will need careful supervision by your doctor/ pharmacist whilst taking this supplement.

Magnesium too, is critical for the efficient functioning of the nervous system. This important mineral has been reported as an effective therapy for some RLS sufferers in a small open-label trial. Letters from patients report benefits from taking this supplement.

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WHAT ARE SOME USEFUL COPING STRATEGIES FOR RLS?

Sufferers of RLS often experience long delays before finding a diagnosis and then effective treatment. For this reason, as well as the sometimes intermittent nature of the disorder, people with RLS have become very clever and even creative, at finding strategies to cope with their frustrating symptoms.

Here is a list of practical strategies which people with RLS have reported as helpful:

  • Really hot, or less commonly, cold baths can be very relieving. Some find a hot shower effective too, while others use hot and cold packs
  • Massage, vibrating devices and equipment that gives transcutaneous electrical nerve stimulation provide temporary relief for some, acting as a counter-stimulus
  • Some perform acupressure, or practice relaxation techniques, meditation, yoga, tai chi or other gentle stretching movements
  • Engrossing mental activity can delay or eliminate symptoms. Find an activity you enjoy to help distract you when the sensations are relentless. Reading a gripping novel, doing crosswords, being absorbed with a hobby, or playing video games helps during times that you must stay seated, such as when travelling
  • When travelling, plan ahead. Have some of the engrossing activities mentioned above, at the ready. If you are in the car, plan to make frequent stops to refresh yourself and avoid sleepiness. When travelling by plane, organise a doctor’s letter, requesting seating with more leg space. You will need to be early at the airport, as the demand for exit and aisle seating has increased
  • Have an ‘escape’ place ready to sleep in, when you are concerned about disturbing your bed partner
  • Trying to suppress the urge to move will only make the sensations worse! For those with Periodic Limb Movements in Sleep (PLMS) this advice to ‘escape’ may be for your bed partner
  • Standing or kneeling instead of sitting when you go to do things may help. You may also find that raising the height of your computer allows you to continue working longer
  • Physical activity, particularly involving the limbs just before bedtime may be helpful. Try some of the following: (Tip: Listening to music is a good relaxer whilst doing any exercise.)   
        
    1. Riding a stationary bike or walking on a treadmill
    coping image 1

    2. Stretching exercises seem to be useful, such as taking a pace out from a wall then leaning forward with both arms up. Then hands pushing away from the wall and feel a strong stretch in the calf muscles.
    coping image2

    3. Sit on a fairly high chair and have a piece of stretchy material ready (a stocking is good with knots tied at the ends for ‘handles’). Holding both ends, hook the middle under your foot and raise and lower your leg about 20 times. Change feet. You can also do both feet at the same time. This works well lying down, one leg at a time, so maybe you won’t need to get out of bed!
    coping image 3


Remember that excessive exercise can have the reverse effect and worsen your RLS!

FINALLY:
Unfortunately, it is very commonly reported that alcohol, caffeine and nicotine are substances that can exacerbate the symptoms of RLS. Many have tried these, hoping for a small comfort, but have found the reverse happens! Alcohol may initially offer brief reductions in restlessness and appear to promote sleep, but after 30 to 90 minutes, this effect dissipates and may be superseded by rebound worsening of leg restlessness and sleep-disturbance symptoms.

Because fatigue and drowsiness tend to intensify the symptoms of RLS, establishing good “sleep hygiene” is important. This includes going to bed at a consistent time; not allowing yourself to fall asleep in front of the TV; avoiding stress near bedtime and implementing a calming routine leading up to sleep.

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IS RLS HEREDITARY?

As demonstrated by clinical surveys of large groups of RLS patients, RLS often runs in families. The studies show a positive family history in about 50% of affected individuals with a prevalence of three to five times greater than in the population without RLS.

Clinical features shared by individuals with what is called ‘familial’ RLS include; symptom onset before the age of 30; exacerbation during pregnancy; and sensitivity to alcohol. The mode of inheritance seems to be ‘autosomal dominant’. In other words, 50% of an affected individual’s first-degree relatives (i.e. parents, siblings, and children) are also likely to be affected by RLS.

Studies aimed at identifying the gene(s) causing the familial forms of RLS have not yet borne fruit. Nonetheless, preliminary findings are promising, and the hunt has been taken up by several groups within four genetically distinct populations: Canada, Northern Italy, Germany, and Iceland.

RLS appears increasingly to be a complex disorder, likely influenced by many genetic factors (rather than a single hereditary component). Given the intensity of research in diverse populations, the future promises to yield additional information about these genes, which will bring researchers closer to solving the mystery of what causes RLS and will assist them to improve treatment for the disorder.

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WHAT IS THE CAUSE OF RLS?

While there seems to be no one single cause for people with RLS, a number of facts are now known. They include:

  • Drs Earley and Allen have documented central iron deficiency in patients with RLS, by using MRI and by taking cerebrospinal fluid (CSF)
  • Painstaking genetic linkage studies by Drs Montplaisir and Rouleau have discovered that RLS is linked to chromosome 12 or 14, depending on the family. Their finding offers promise for further understanding the pathology of RLS
  • Dr Connor seems to have found that receptors for iron transport are insufficient in patients with RLS. These receptors aren’t “packaging and delivering” an adequate amount of iron to specific cells in the substantia nigra, in the mid brain section. In June 2003, Dr Connor presented his study of autopsies on the brains of people suffering from long term RLS. No Neuro degeneration and no loss or damage of brain cells, as seen in Parkinson’s and Alzheimer’s Disease was found. This finding gives hope that the development of treatments will be more specific to the disorder
  • The discovery of physical evidence of RLS confirms with certainty that the disease is not psychosomatic but a sensorimotor neurologically based disorder
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IS IT POSSIBLE TO HAVE RLS IN OTHER PARTS OF MY BODY?

Although the sensations almost always begin in the legs before progressing to other parts for some, RLS may also involve the arms or other parts of the body, Estimates of RLS patients with symptoms in the arms range from 34% to almost 50%. With increasing severity, RLS symptoms may spread to other body parts, including hips, trunk, and even the face, but in such cases the legs continue to be affected.

The sensations are usually perceived to originate deep inside the leg, but the involved area of the leg appears to vary considerably. Even in patients with neuropathy-related RLS, there is no documentation that sensations start closer to the foot, where the sensory deficit is likely to be worst. Patients frequently initially report the sensations in one leg and not the other. On the next occasion, however, they may find the sensations shift to the other leg or effect both.

Dr Ekbom reported in 1945, that RLS symptoms almost never involve the foot alone, but in rare clinical cases a patient will report symptoms beginning in the foot and progressing to the leg. The response to an urge to move in RLS must not be confused with habitual repetitive movements such as foot-tapping. These unconscious motor behaviours are carried out without any acute or distressing awareness of an urge to move.

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CAN YOU HAVE RLS WHILST ASLEEP?

If the legs are moving whilst the person is asleep it is likely to be a movement disorder called ‘Periodic Limb Movements in Sleep’ (PLMS). Studies show these leg movements occur in about 80% of people with RLS, however, PLMS is also common in conjunction with other disorders and among the elderly.

This neurological movement disorder is also known as 'Nocturnal Myoclonus', meaning a sudden shock-like involuntary movement. It is characterised by repetitive movements, usually described as twitching or jerking, which have a rhythm, recurring about every 20 to 30 seconds. Some are small flexing movements but they can vary in intensity to large jerks or kicks. The legs are mostly involved but for some, the arms move too.

The state of disarray of the bed may be a good indicator for this condition, but reliable reports usually come from the person with RLS unfortunate bed partner. This person may become a victim of insomnia, or can be forced to leave the bed, due to their partner's incessant movements and continual rustling of the sheets.

These frequent arousals cause a disturbance of the sleep pattern, robbing sufferers of sound, restful sleep, including valuable REM sleep (Rapid Eye Movement). This REM stage of sleep is vitally important for refreshing both mind and the body. Advisory Board member for the United States RLS Foundation, Dr Ralph Pascualy, MD, comments that many of his patients complain about being tired in the daytime, despite the fact that they may have slept for six or seven hours. He explains that the twitching movements ".... disturb the brain just a little bit, but not enough to wake up and know there is a problem."

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ARE THERE ANY SUBSTANCES WHICH SHOULD BE AVOIDED?

There are a number of substances that seem to exacerbate the symptoms of RLS. One of the most frequently reported offenders is alcohol. Normally, RLS symptoms are more likely to occur when a person is relaxing and tending to be drowsy, so the fact that alcohol promotes this state is a likely reason that it worsens RLS symptoms. Even those that usually achieve good relief from drug therapy have complained of symptoms after drinking a moderate amount of alcohol. To this end we suggest a very modest intake is wise.

For some, alcohol may initially offer brief reductions in restlessness and appear to promote sleep, but after 30 to 90 minutes, this effect dissipates and may be superseded by rebound worsening of leg restlessness and sleep-disturbance symptoms.

Other substances to avoid:

  • Caffeine in all its forms, including coffee, cola drinks, cough syrups etc
  • Nicotine, especially near bedtime
  • Most of the following medications: antihistamines, (including cold and sinus preparations); antidepressants/ tranquilisers; calcium-channel blockers (used to treat high blood pressure and heart conditions); anti-nausea agents; antipsychotics. If you need to take any of these medications, discuss with your doctor/ pharmacist the possibility of acceptable alternatives. Be sure to inform your doctor/ pharmacist about all the medications you are taking, including herbal and over the counter preparations
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HOW COMMON IS RLS?

Surveys in Western countries have shown the prevalence of RLS symptoms range from 5% to 10% of the adult population. A higher incidence is reported among women, ranging from a small excess to almost double the number of women to men. Enquiries and letters sent to RLS Australia show a predominance of women who are seeking help.

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IS THERE AN AUSTRALIAN SUPPORT GROUP?

RLS Australia is a sub group of Sleep Disorders Australia. We are a relatively ‘young’ organisation and are operated by a small group of volunteers. As such, our support services are limited and we are not able to provide a network of face to face support groups as yet.

However, if you are looking for someone else to meet with - someone who understands your perplexing symptoms and has a common bond with you - we encourage you to contact us with your intention and we may be able to assist you. We will be able to give you guidelines and some useful material to help get you started. 

Our current support services include:

  • Message bank service for your enquiries:
    02 8250 6077
  • This web site; which is regularly updated with the most recent research and treatments
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HOW CAN I FIND A DOCTOR WHO UNDERSTANDS RLS?

Many people suffering RLS are desperate to find a doctor who can treat their problem adequately. Whilst there are some doctors who are informed about the condition and its current treatment, others have little up to date knowledge.

Many doctors are pleased to be given information such as the fact sheets you can take from this web site.


Please note that our web site has a section which gives diagnostic guidelines and information on the latest treatments. These have been compiled by a team of experts for the Mayo Foundation for Medical Education and Research in the US. This section will be updated with any new findings on a regular basis.

Help us create a database of Australian doctors.

RLS Australia is requesting visitors to this web site share the name of any doctor you believe took your condition seriously and was interested in providing you with proactive and accurate information on current treatments to help relieve your symptoms.

This doctor may be a GP, a Neurologist or other specialist. Please fill out the form provided and email it to us.

Providing the doctor’s contact details will assist us, as we will need to ask permission to publish his/her name. Once they are happy to be included, the doctor’s details will be posted in the recommended doctors section of the web site.

 

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