We all get a bit restless sometimes. So it's easy to assume that having restless legs syndrome (RLS) - where sufferers find themselves with an urge to move their legs, usually at night - isn't a particularly troubling or serious condition. However, RLS can be extremely distressing and may significantly affect the daily life of sufferers.
What is RLS?
Rather than simply being a bit fidgety, sufferers of RLS report feeling uncomfortable sensations in their lower limbs - an itching, crawling or tingling sensation, like multiple small electric shocks - that cause them to move their legs in an attempt to relieve the feeling. Often occurring in the evening or at night, RLS can significantly affect sleep and cause a great deal of discomfort.
What's it like to suffer from RLS?
Joy, 49, was diagnosed with RLS in 2006 at the age of 36.
"It affected me for several years, until I was extremely exhausted and needed medical intervention," she says. "I couldn't concentrate well and felt shattered all the time; it was extremely stressful and unpleasant."
Eventually Joy sought help from a specialist sleep centre who were able to relieve her symptoms with a combination of medication, eliminating stimulants such as caffeine and sugar from her diet, and helping her to develop a healthy sleep schedule.
However, with RLS, it's not a one-size-fits-all approach, as whilst there are factors that may predispose people to develop the condition, there is no set cure and there are many factors that remain unknown.
How common is RLS?
According to specialist of John Hopkins University and diplomate of the American Board of Sleep Medicine, RLS isn't as rare as we might believe.
"The extreme form occurs in 0.8% of the general population. It's not rare, but it's not common," he explains. "The milder form occurs in (still clinically significant) 2-3%. Then there's an episodic form that comes and goes that may occur in 5-10%."
Interestingly, some people could be suffering from RLS without realising there is a specific condition at fault.
"Many people aren't aware of it; they're fighting these leg movements at night, they're fighting the stress - sometimes that can be severe - and they blame it on other things," he explains.
How else might sufferers be affected?
President of the (EFNA) and past-president of the (EARL), Joke Jaarsma, says that the condition is often underestimated.
"RLS is still not widely recognised and/or taken seriously," she explains. "Whilst some medications are used, there are no drugs available developed specifically for RLS, and even some neurologists do not know much about the condition."
"RLS symptoms show a diurnal rhythm, in that the symptoms occur mainly during the evening and night. As a result, patients suffer from a chronic lack of sleep and have to get out of bed several times per night over long periods, which has a huge impact on their lives, and often their professional lives (absence from work happens a lot)."
"Also, because of the symptoms, patients cannot sit still in the evening and therefore many social activities become almost impossible to do (theatre, cinema, dinner parties, etc). Travel, especially air travel, can be extremely difficult for RLS patients, since the urge to move is extreme and this is often impossible in aeroplanes."
"RLS often is genetic. Children also can suffer from RLS. In these cases, RLS is often confused with ADHD."
What happens at the GP?
Despite some of the complications of treating the condition, if you suspect you may be suffering from RLS, there is help available. The first port of call should be your GP.
"Your GP will ask you about other possible causes for your symptoms, including anxiety/depression, peripheral neuropathy (vitamin B12 deficiency or diabetes), peripheral arterial disease, and even ADHD in kids," explains GP
"They will also ask patients about certain risk factors that may be exacerbating symptoms, including high BMI, smoking, lack of exercise, low alcohol consumption and diabetes mellitus."
To rule out other or underlying conditions, the doctor will usually carry out a "neurological and arterial blood supply examination of the legs, and prescribe blood tests including B12, full blood count, diabetes screen, thyroid, folate levels and serum ferritin, as restless legs syndrome is often associated with an iron deficiency," he explains.
If you are diagnosed with RLS, it is then likely then that your doctor will work with you to find the best lifestyle or medication regime to reduce your symptoms.
Relieving your symptoms
As well as taking any prescribed medications and seeking professional advice, there are several things you can do to help alleviate the symptoms of RLS. These include avoiding stimulants such as caffeine and tobacco, taking regular exercise and improving your sleep regime. Whilst these are not a cure for RLS, they may help alleviate, or help you to manage, your symptoms.
Hope for the future
Whilst a specific treatment for the condition has not yet been found, researchers are working on finding out more about the disease.
"We think that there is a genetic predisposition and this interacts with an iron deficiency," says Allen. "Unfortunately, rather than peripheral iron, our imaging shows that RLS patients have reduced iron in the brain and spine," he explains.
"In addition, we notice that those conditions that affect iron availability for people, that might exacerbate low iron in the brain, are also contributing conditions. The biggest one is pregnancy. If you're a woman and you get pregnant, you've doubled your risk of RLS. Women who have never been pregnant have the same risk as men."
However, whilst these areas have been identified, treating them is far from straightforward.
"Because it's brain iron, it's not so easy to get iron into the brain. And it's only in certain areas of the brain. We're looking at ways to treat this with iron, and we do work with oral iron and IV iron. Sometimes this works. We don't understand why yet. It may be that the iron deficiency changes genetics or changes something in the person, so that the disease is now there and even if you correct the iron you're not going to change it," he explains.
"We're working on new treatments, new ways with IV iron and better iron treatments for people who don't respond to iron. And there are other pathways that people are exploring right now too."
Hello fellow sufferers!!I am really at my wits end with this I can’t cope no more. I take ropinorole and have done for a while however it’s augamented and I’m really struggling. It’s making me cry...lucy90980
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Patient Platform Limited has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.