Frequently Asked Questions
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:
'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.
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.back to top>
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.
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.
Substances to avoid:
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.
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.back to top>
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:
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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.back to top>
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:
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.back to top>
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."back to top>
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:
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.back to top>
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:
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.