A Right Royal Pain in the Leg: Pain and Restless Legs Syndrome

Last updated: June 2021

When I was in my 20s, I thought of restless legs syndrome as an irritation that made it hard to sit still at the cinema or enjoy a long car ride.

As I moved into my 30s, the restlessness escalated and I couldn’t sit still or get comfortable anywhere at all.

When I was in my 40s, I became chronically sleep-deprived as a result of the constant, uncontrollable movements.

Some people have painful RLS

I had been Googling, of course, and knew my endless jiggling was called restless legs syndrome (RLS). But I did not know that pain could be associated with the condition. I thought the pain I was experiencing was unrelated to the RLS. I learned differently. It was around about this time that I sought medical guidance.

The descriptions for RLS sensations vary enormously – aching, throbbing, itching, pulling, tingling. Creepy crawly. Butterflies. Every one of us experiences it differently but like most conditions, the severity can vary.

For some people, the sensations are described as uncomfortable. Some of us experience RLS much more intensely and can even have pain. All of us will experience a degree of relief by moving or stretching the affected area.

When aches become pains

For me personally, the RLS sensations begin in my lower back and radiate down through my leg – almost following the sciatic path. I experience it considerably more on my left side. As my RLS worsened over the years, I started to develop nerve pain at the same time.

Initially, there was a deep throbbing ache but over time, that became shooting sparks of electric pain running up and down my leg. I did not connect the aches and pains with RLS – I assumed they were related to aging and fitness levels. As a former musician, it is not unusual to have back pain and I thought perhaps pain in the leg had just spread from my back.

It is hard to describe pain

With some research and an extended chat with my physician, I learned the pain I was experiencing was all related to the restless legs. As it is a neurological condition, I was experiencing neurological pain. Articulating pain can be difficult – we all experience it and describe it differently.

For me, nerve pain is a burning flash that flickers on and off – most of the day if my RLS is not well controlled. The deep, dull ache is there constantly with the flashes over the top. Left untreated, the pain is there all the time.

Fortunately, I have pharmaceutical options.

Treatment options for RLS

There are many types of treatments for RLSlifestyle changes, exercising and stretching, iron or magnesium supplements, over-the-counter remedies, and prescription medications. There are also various types of prescription medications.

When I was first diagnosed and given medication, it was a low dose of an anti-Parkinson’s drug, which successfully calmed my twitching legs. As pain developed, I needed further support and an anti-epileptic drug was added. It targeted the nerve pain I was experiencing and settled my legs completely. I am unbelievably grateful that, for me, medication has been successful. Not everyone is so lucky.

Treatment makes a difference

There is sometimes a misconception that RLS is just a nuisance and not a genuine medical condition. But this is untrue. Restless legs can result in severe sleep deprivation and chronic pain. Left untreated, it can have a significant impact on mental health.

Not all RLS sufferers will experience pain, and sometimes it can be unrelated, but it was important in my own journey to realise the pain in my back and legs was part of RLS.

It not only meant I could address the symptoms, but a correct diagnosis allowed me to continue daily activities and exercising as I had previously believed the pain was associated with injury.

Everyone’s experience of RLS is unique. Recognising the symptoms and treating them accordingly has resulted in a vastly improved quality of life for me.

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