There is a great deal of misunderstanding about Restless Leg Syndrome (RLS). Most people – including doctors – see it as “uncomfortable”, “inconvenient”, and “not a big deal”. I suppose for many people those adjectives are an accurate way to describe their symptoms. However, there is a rather large population of RLS patients whose daily – and nightly – lives are miserable. Even the definition of RLS does not accurately describe how much it can impact a person’s quality of life. According to the Mayo Clinic:
Restless legs syndrome (RLS) is a condition in which your legs feel extremely uncomfortable while you’re sitting or lying down. It makes you feel like getting up and moving around. When you do so, the unpleasant feeling of restless legs syndrome temporarily goes away.
Restless legs syndrome can begin at any age and generally worsens as you get older. Women are more likely than men to develop this condition. Restless legs syndrome can disrupt sleep — leading to daytime drowsiness — and make traveling difficult.
The reality for many – who have RLS – is so much worse than that description. Their lives are miserable – with symptoms that almost never go away, and never having enough sleep. The RLS symptoms alone can make it a depressing, and demoralizing existence. When you add in most people’s misunderstanding – including many doctors – about this disorder, patients often feel as if they are alone – with no support system.
In some cases, a patient may have such severe symptoms that – in addition to the usual RLS medications (i.e. Mirapex, Requip) – they are prescribed oxycodone, and methadone. Many physicians – not understanding the impact RLS can have on someone’s quality of life – who encounter patients who have been prescribed narcotics for their symptoms often rush to judgement, and are quick to voice their negative opinions about the use of such drugs in RLS treatment. In my opinion, this negative attitude is the result of physicians not staying abreast of the latest information about RLS.
It is not just physicians who display a lack of compassion, and understanding. Most people – even those with milder forms of RLS – cannot fathom how destructive RLS can be to a person’s life. Some are quick to offer advice about “home remedies”, and alternative treatments – appearing to become judgmental when their advice is not taken. This can make the isolation that someone with RLS feels even more pronounced. Living life in a cloud of sleep deprivation wears on a person – negatively affecting their relationships, as well as their physical, and mental health.
Even with medications, many RLS sufferers still experience severe symptoms. This can have a huge negative impact on their quality of life, and mental health. Many spend their nights – as well as their days – constantly on the move. They can never really relax, because the moment they do their symptoms become decidedly worse. This constant need to move – coupled with an extreme lack of sleep – can be extremely depressing. Many people with this disorder often reach a point – due to a lack of control over their symptoms, and the knowledge that they will only get worse – where they seriously consider suicide.
I have Restless Leg Syndrome. I would say that my symptoms are moderate. Most of the time the medication I take for it is able to control my symptoms. However, what many people – including doctors – do not realize is there are many medications that can make RLS symptoms significantly worse. Among those are many of the medications used to treat mental health issues/mental illness. The medication I currently take for my depression is one of those. If I do not take it very early in the day, I will experience RLS symptoms starting in the afternoon – continuing most of the night – that my RLS medication cannot get under control. Even as frustrated, and out of sorts as I get because of my RLS, I feel very blessed that my symptoms are not as severe as my mother’s – yet.
Since I have been staying with my parents, it has become extremely apparent to me how awful RLS has made my mother’s life. She literally can never relax, put her feet up, and just hang out. Sometimes it is even impossible for her to sit, and have a meal with me, and my father. Over the last few months she has had horrible problems with her legs – severe problems with one of her knees, and extremely horrible circulation. The doctors she sees for both issues recommend that she spend a lot of time with her legs elevated. For most people this would be something fairly simple to do. Not for my mother. Due to her RLS, she cannot spend nearly enough time with her legs elevated. She spends a lot of time standing, and walking around on her swollen, and pain filled legs.
She almost never has enough sleep. I have seen her so sleep deprived that she has fallen asleep while standing- holding onto her walker. In the past – before she had to use the walker – she had several very bad falls. I think they could have been caused by her dozing off while walking and/or standing. There are some nights when her symptoms are so bad they cause her to cry – more like wailing – out of frustration, and misery. On more than one occasion my mother has said that RLS has affected the quality of her life “more than having cancer ever did”.
Even with all I have written here to describe the miserable reality of an RLS sufferer, it is still inadequate. I do not believe there are enough words to really explain what life can be life for someone with Restless Leg Syndrome. I do hope what I have written brings a measure of understanding about how RLS can affect the mental health of people with this disorder.
