Frequently Asked Questions
When should I consider seeing a doctor about RLS? No one should live with significant discomfort without discussing their symptoms of Restless Legs Syndrome with a doctor. Even if you feel your symptoms are mild, they might be seriously affecting your sleep. If you have the symptoms of Restless Legs Syndrome, consider if you are also losing sleep frequently, feeling depressed or anxious, or having trouble concentrating. If any of these are present or if you just want to feel better it is time to talk to your doctor.
Does RLS ever go away by itself? There are reported cases of spontaneous remissions of Restless Legs Syndrome. However, they are rare. RLS is a progressive disease for most people, with symptoms getting gradually worse over time. For those with restless legs symptoms caused by a medical condition, treatment of that condition can relieve or improve their Restless Legs Syndrome.
What else can I do to cope with RLS? Depression and anxiety commonly result from Restless Legs Syndrome. If you have moderate to severe restless legs symptoms, it is important to find ways to cope with the stress it can cause. Here are a few ways to take control: Work with your doctor: Changes or combinations of medicines are often necessary to control symptoms. Join a support group like www.rls-uk.org. If you feel overwhelmed by restless legs syndrome, consider speaking with a professional mental health provider.
Can RLS develop into something more serious? Most people with Restless Legs Syndrome have the "idiopathic" form - meaning there's no known cause. Consequently, there is currently no known risk of RLS progressing to more serious conditions, such as Parkinson's disease. Restless Legs Syndrome can also be caused by medical conditions or diseases (such as iron deficiency, diabetes, or kidney disease). If untreated, these medical conditions can cause serious health problems as well as worsen the symptoms of Restless Legs Syndrome.
Is there a link between iron levels and RLS? There are several chemicals that are thought to be associated with the development and symptoms of RLS. One is of course dopamine, a chemical crucial for movement, thought process as well as motivation. Drugs which work on the dopamine system, such as pramipexole, ropinirole and rotigotine, are mainstays for the treatment of RLS. Another chemical that seems to be very important for the development of RLS is iron. In the brain cell systems, iron helps with the actions of dopamine and is known as a co-factor. In the evening and night, when the symptoms of RLS are most pronounced, both iron and dopamine levels show a “dip”, known as the circadian variation. We know that RLS can also develop during pregnancy, typically in the last three months, a time when iron levels can be low. RLS is also associated with people who develop iron deficiency anaemia, sometimes due to heavy menstrual periods for instance. It is for this reason that measurement of iron in blood tests is important for RLS and should be done in every case of RLS. An association between RLS and iron deficiency in the blood has been long recognised. In fact, it was back in 1950 when Karl Ekbom noted that about 25% of RLS patients had an iron deficiency. Studies have also shown that abnormalities of brain iron storage and transport are strongly associated with RLS. But the simple measurement of iron in blood will not suffice. In the clinic, measurement of a protein called ferritin has been used to assess iron status in RLS patients. Ferritin measurement provides a useful measure of iron storage, as iron binds to this protein. Low ferritin values indicate low iron storage in the body and brain, and decreased availability of iron in the brain of RLS patients. Measurement of ferritin levels is more accurate than measurement of iron in the blood as iron levels can be variable and fluctuate. Two independent studies reported that while blood iron values in patients with RLS compared to healthy controls were normal, ferritin levels were reduced in the RLS patients. Iron levels may be normal even if you have a deficiency of iron and iron levels in the blood can be affected by diet, stress as well as the pattern of sleep. So what does all of this mean for all of those who suffer from RLS? It means that you must have your ferritin level in the blood checked at regular intervals. What is considered a ‘normal value’ of ferritin level varies from laboratory to laboratory and so normal levels will be defined by your local laboratory range. If the ferritin level is low or at the lower range of this normal value, it is reasonable to have a trial of treatment with oral iron tablets and recheck the ferritin levels to make sure this has normalised. Please be mindful however that too much iron supplementation is not good and the ferritin levels also need to be monitored to ensure that iron replacement is not overdone. The replacement of iron may, in some cases, treat the symptoms of RLS very effectively.
I have heard that RLS mostly affects older people. In 2012, RLS-UK carried out a survey of our forum users and found that of 269 responses, over a third of respondents (35%) indicated they had first noticed their RLS by the age of 20. Raise the age to 30 years of age and 53% had noticed it. Finally, 69% of respondents, not far off three-quarters, had noticed the symptoms by the age of forty. This is somewhat contradictory to the widely held belief that RLS mostly affects older people. We know that RLS is reported more often in older people but there may be many reasons why this is the case. Perhaps we should be more conscious of the difference between the age at which symptoms first manifest and the age at which people are diagnosed?
Managing your RLS with medication If raising serum ferritin above the recommended levels, and replacing trigger medications does not help, some people have no choice but to take medication to manage their RLS.The UK NICE and NHS guidelines are slightly out of date and the best, most up to date resource for the treatment of RLS is contained in the Mayo algorithm, written by the world’s top RLS experts.
Intermittent RLS Carbidopa Levopdopa, low dose opioids and benzodiazepines can all be useful to treat intermittent, occasional RLS. Carbidopa Levodopa is a dopaminergic drug and should be used with caution due to the high rate of augmentation ( drug induced worsening of RLS) which occurs in up to 70% of patients taking it on a daily basis. For this reason, it should be prescribed only for intermittent use. Opioids, such as codeine ,hydrocodeine ,oxycodone or tramadol can be effective at low dose in the evening to treat occasional RLS and the common side effects of nausea and constipation can be easily managed. Benzodiazepines ( diazepam, lorazepam, temazepam, clonazepam) before sleep may be useful for occasional RLS but longer lasting agents, like clonazepam, may result in more adverse effects such as unsteadiness in the night and daytime drowsiness and cognitive impairment.
Chronic Persistent RLS RLS that occurs on average at least twice a week will require daily treatment. Dopamine agonists ( Ropinirole, Pramipexole, rotigitone patch) are no longer first line treatment amongst experts due to the high risk of Augmentation ( drug induced worsening of RLS) and Impulse Control disorders. If you are on any of these medications, you should arrange a review with your doctor to discuss augmentation and, if the drug has lost effectiveness, to discuss a slow taper and a switch to another medication in another class of drugs. Withdrawal from dopamine agonists can be very difficult and traumatic and will require careful monitoring. Alpha 2 delta ligands should, when not contra indicated, be tried as first line treatment. Gabapentin and pregabalin are usually administered in the evening. Gabapentin is not easily absorbed above 600mg so split doses two hours apart may be required to enhance absorption and efficiency. Magnesium supplements can affect absorption and are best taken two hours before gabapentin. Gabapentin should be started at 300mg ( 100mg for over 65) and increased every few days. Average dose is 1200-1800mg. Pregabalin is more easily absorbed and can be taken in one dose. starting does is 75mg (50mg for over 65) and the average dose is 150-200mg. Gapabentin and pregabalin can take up to 3 weeks to become fully effective and common side effects of drowsiness, dizziness, unsteadiness, oedema, weight gain usually resolve after 6 to 8 weeks. Side effects can include depression and suicidal ideation and should be monitored, especially at higher doses.
Refractory RLS Where first line treatments have failed due to adverse effects or augmentation, low dose opioids are highly effective and do not generally lead to addiction or tolerance if patients are adequately screened and monitored. The Massachussetts General Hospital Opioid Study shows that long term, low dose opioids used in RLS do not lead to an increase in dose over long periods of time. ( Link to massachussetts opioid study).Opioids should not be withheld due to fear of tolerance or dependence as they can result in complete resolution of refractory RLS and improved quality of life. in the UK, Oxycodone is licensed for RLS but codeine, tramadol and buprenorphine can be prescribed off licence. Most general Practitioners may be reluctant to prescribe opioids without the supervision of a neurologist. Tramadol is the only opioid that can cause augmentation and worsening of symptoms should be monitored. Common side effects of nausea, skin itching, sweating and anxiety should be monitored and treated accordingly.
Medications Chart Where first line treatments have failed due to adverse effects or augmentation, low dose opioids are highly effective and do not generally lead to addiction or tolerance if patients are adequately screened and monitored. The Massachusetts General Hospital Opioid Study shows that long term, low dose opioids used in RLS do not lead to an increase in dose over long periods of time. ( Link to Massachusetts opioid study).Opioids should not be withheld due to fear of tolerance or dependence as they can result in complete resolution of refractory RLS and improved quality of life. in the UK, Oxycodone is licensed for RLS but codeine, tramadol and buprenorphine can be prescribed off licence. Most general Practitioners may be reluctant to prescribe opioids without the supervision of a neurologist. Tramadol is the only opioid that can cause augmentation and worsening of symptoms should be monitored. Common side effects of nausea, skin itching, sweating and anxiety should be monitored and treated accordingly.
Some people have claimed giving up dairy, or wearing copper bracelets, bandages or other such devices has reduced the severity of their symptoms. Is there any clinical evidence to support these working? There have been claims over many years of copper bracelets, straps and magnets helping many things. Copper bracelets could only work if copper was actually entering the system, and even then the amount of copper being absorbed would be too small to make a difference. There is anecdotal evidence that some people have found relief using these products but would reiterate that there is no cure for RLS and we would therefore advise caution when considering buying or using any such devices. With regard to eliminating dairy, it is estimated that as many as one in five people may have a food intolerance and western countries have a significant reliance on dairy. About 10% of people are lactose intolerant. Reducing dairy may make a difference if you are lactose intolerant but this could be short-term and should only be done under the supervision of a medical practitioner.
If a medication caused augmentation in past, can I try it again? You could try another drug for a while, which could make a difference or take a 'drug holiday', whereby you come off medication for a set period of time (perhaps about two weeks). A 'drug holiday' should only be done under medical supervision and will not work for everyone. So, yes, you can try a drug again but there is no certainty that it will work a second time.
What do you do when the drugs stop working? If you have no other options, ask your medical practitioner to suggest combinations or to split doses. It may be that at this point you have no choice but to accept a certain amount of the symptoms.
Often, when I wake in the morning, my body wants to go to sleep. This is common in RLS. You think you’ve slept but you’ve only had superficial sleep, not the deep sleep you need to achieve sleep refreshment. You wake up fatigued. It is very important for doctors to recognise this as it is treatable. RLS seems to affect the first part of the night for many people. We often recommend that where possible, people change their sleeping patterns so they go to bed later and try to sleep a little longer in the morning.
I have heard the terms 'Augmentation' & 'Rebound' being used when discussing RLS. What does it mean?