Restless Legs Syndrome: So Much More Than Restless Legs

When most people think of restless legs syndrome (RLS), they immediately assume it’s about having a sensation of restlessness in the legs. That is after all, what the syndrome is commonly called.

Another name for RLS is Willis-Ekbom Disease and perhaps that would alleviate some of the confusion - as RLS can be so much more than restlessness in the legs. And so much more distressing than the dismissive tone I’ve heard when RLS is mentioned.

'Restless' is an understatement

“Restless” seems like such a subtle term for the intense sensations often experienced. Descriptions vary widely - aching, burning, cramping, crawling, creeping, itching, pulling, throbbing, tingling.

For me, it’s the creepy, crawly march of the tiger beetles. Like many others I’ve anecdotally heard, the restlessness is not limited to my legs. And it is not always limited to evenings. But more significantly, I learned some years ago that pain can be associated with RLS.

The sensations are there day and night

My sensations begin with a deep ache in my lower back then travel down both legs, far more intensely on my left. If left untreated, I experience mild restlessness in my arms. The sensations are there all day and all night - any time I’m not moving. And sometimes when I am.

Before I had interventions I could notice it even when doing a hard and fast exercise class. When going for a long walk I’d stomp my feet as hard as possible because the vibrations up my leg felt so good. Just for a moment. The RLS was there but just didn’t feel as distressing when I was moving.

It was manageable until it wasn't

I made all the lifestyle changes and took high doses of magnesium. I worked hard to maintain good iron levels through diet and infusions.

These things definitely helped me a little and continued to keep extreme upset at bay for quite some time. But then things got much worse. Everything seems to get worse as we age.

Discovering relief, then augmentation

About 15 years ago I was introduced to pramipexole and that changed my life. The restlessness would settle a couple of hours after I took the medication and I was able to sleep. I would have 8 to 10 hours of peace in my legs. It was a foreign and euphoric experience, one I reveled in most nights for quite some time.

About 5 years in, I experienced augmentation, and with that came pain. Intense nerve pain running from my lower back to my ankle. It would throb constantly. For hours and hours. For me, the pain was not excruciating - I was maybe at a 4 or 5 on the pain scale. It never intensified from that. But still - I didn’t like it and the restlessness was back. I was sleepless once more.

Switching to a new medication

I returned to the doctor and was taken off pramipexole and put on pregabalin. It was like a magic cure for my pain. It calmed the RLS but didn’t eliminate it. It was just enough to allow me to rest. My insomnia is complex and involves more than my RLS diagnosis. Insomnia treatments came much later for me.

Reintroducing pramipexole

After about 6 months on pregabalin, the doctor reintroduced pramipexole and together, they have completely calmed my creepy, crawly legs and worked fairly consistently for about 10 years now. I have changed the dosage from time to time - when things got worse or better. I’m always on the lowest dose of pregabalin but sometimes require slightly higher doses of pramipexole.

Medication interactions

In recent years I’ve been through the excruciating process of discovering a lot of mental health medications that exacerbate RLS. It took 2 years and 2 nervous breakdowns to finally discover pharmaceutical options that alleviated symptoms.

There are so many medications that make RLS worse. RLS contributed to my severe insomnia and severe insomnia contributed enormously to my nervous breakdowns. Finding combinations of medications that worked became a matter of life and death for me.

Making sense of RLS

When first I heard the term restless legs syndrome, I was naive. Even though I experienced it myself, I assumed sensations in my arms and my back were unrelated. I put daytime restlessness down to being hyperactive. When pain developed I thought perhaps it was injury or aging.

For me, all these sensations were directly related to RLS. It is a neurological condition so I guess it makes sense it can affect the neurological system in a variety of ways.

Thankful for the quality of life I have now

This is my personal story and does not reflect how others experience RLS - the sensations, the physical extent, the timing, and the pain.

These medications have worked for me and I would not have the quality of life I now have if it hadn’t been for a clever and compassionate team of doctors. I am abundantly grateful. For other people, they may not help. We’re all different. What does RLS look like for you?