Three pairs of legs with restless leg syndrome standing next to each other. The pair of legs in the middle are experiencing pain where as the other two are just feeling uncomfortable.

Do You Suffer From Painful RLS?

Restless legs syndrome (RLS) symptoms are often described as an urge to move, accompanied by uncomfortable or unpleasant sensations. We hear a lot about the different sensory symptoms of RLS – the pulling, tugging, creepy crawling sensations that many of us experience.

What we don't hear much about is pain. At least I hadn't until more recently. Even though painful RLS has been largely ignored, one study found that 59 percent of those with RLS describe their symptoms as painful.1

I had never used the word pain when talking about my own RLS symptoms. They are torturous, in an annoying sort of way, but not painful. In recent years there have been a number of studies focusing on painful RLS and finding what the difference between painful and non-painful RLS might tell us.

Are my symptoms RLS or something else?

RLS symptoms are complex and can often be confusing. One person may have few similarities with another. I've suffered from terrible pain in my legs and also RLS since I was a child. My pain is not accompanied by an urge to move but does respond to movement. It also goes away the moment my RLS symptoms start. I had always assumed it was a separate issue.

Lately, I've been wondering if it is all connected in some way. Sometimes we may assume a symptom (especially if it is something new to us) as just part of our RLS when in reality, they are not associated at all. And maybe, on the flip side, we sometimes miss the clues that they actually are. I know of one person whose RLS did not start out as painful, but much later in life became so. I don't know how common it is for symptoms to change or whether other issues might contribute to those changes. Sadly, RLS comes with no owner's manual.

Painful vs. non-painful RLS

People with painful RLS most often describe the pain as being located in the same area as they feel the urge to move. Typically in large muscle areas. This is different from neuropathy which generally radiates from the feet, or extremities, upwards.

Painful RLS can be difficult to diagnose and is often more severe than non-painful RLS. One large, multi-national study found that people with painful RLS are frequently more tired than those with non-painful RLS. They also found that the need for treatment was higher. The word people most often used to describe the pain was "burning."2

In another study, people who experienced painful RLS also had lower ferritin levels, more anxiety and depression, lower quality of life, longer latency to sleep onset, and less periodic limb movements, than people who experienced non-painful RLS.3

Interestingly, pain medication can be a very effective treatment for RLS, even in the absence of pain.

RLS and genetics

RLS has a strong genetic component. The numbers vary from study to study, but it appears that approximately 50 percent of RLS sufferers have a positive family history.4

A number of gene variants have been found to be associated with RLS risk. A more recent study found there may also be an association between some of those variants and painful RLS. Every year there are more genetic discoveries.5,6

I don't know what this means as far as future treatment goes, but the more we know, the better our chances are for, dare I say it, a cure! Please let us know if you are someone who suffers from painful RLS.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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