My Night With Restless Legs Syndrome

I have restless legs syndrome (RLS).

I rarely talk about it. It might sound to some like a benign and trivial condition everyone experiences at some stage. To some extent that may be true, but my restless legs are severe and chronic. And normally extremely well-managed.

While I have a lot of associated nerve pain, if I take regular medication, it’s fine. I rarely notice it, and when I do, it’s not too bad. In that aspect of my life, I found a little pocket of “normality.”

Then the last two days I ran out of one of my RLS meds. The first night wasn’t too bad — a bit restless but I’d taken painkillers so they’d help. Last night, however… well, that was a different story! I am now painfully reminded of why I religiously take my medications.

First, I was really late taking the rest of my meds. I normally take them at 8 p.m. but was late home, so I was already behind. I also had a glass of red wine and a cup of tea early in the evening. Alcohol and caffeine exacerbate my RLS — I really wasn’t thinking things through. I took my other meds and painkillers around 10 p.m., thinking that would be sufficient to help me sleep. It wasn’t.

It. Was. Not.

I had the night from hell. Aside from having no sleep whatsoever (something I have experienced more times than I care to reflect upon), I was physically exhausted but utterly incapable of keeping still. My lower back had a persistent deep ache, with intermittent nerve shocks running down my legs. Endlessly. Perpetually. Interminably. After a few hours, I could not keep my eyes open. I could not go to sleep. My legs were running a marathon, dancing the tarantella, and shaking their sillies out.

I stretched and stretched and stretched. I thumped my back and legs as hard as I could. I rolled around trying to get relief and massaged my butt and legs until my hands cramped. For hours and hours and relentless hours. It was very un-fun. I wanted to run. At 3 a.m. In the dark. Up the street. On my own. In the rain. I thought better of it.

RLS is often described as a creepy crawly feeling, only relieved by movement of the limb. That is true. But the creepy crawly feeling was like Aragog and his horde of acromantula had taken up residence in my lower back and were doing a merry dance while gnawing their way through my skeleton. The ache in my back went through to my core. I needed a deep-tissue massage but it wouldn’t be enough. No amount of massage alleviates the restlessness. I wanted to bend backwards and snap in half. Nerve shocks ran up and down my legs and all the while, I was exhausted. So tired. So very, very tired.

At about 3 a.m., there was binging and self-harm. It didn’t help the RLS. It’s been months since I harmed — I am genuinely trying to stop. Like really genuinely! But I was outside myself last night. I now have cuts on my forearm. Not deep. Not dangerous. But just like a hippogriff lashed out with its talons to remind me I am fallible.

I have had two prescription meds that help my RLS for about eight years. Together they have saved my life. Prior to being prescribed these meds, I had nothing that helped. I was managing perhaps 20 minutes’ sleep at a time, maybe three of four times a night. I had people telling me I wasn’t tired enough. I would morph between too tired to function and so manic I could move mountains. The relentless urge to move my body, stamp my feet and fidget like a toddler desperately needing a toilet, annoyed not only me, but everyone around me. Discovering those two meds changed my life. Really, really changed my life!

Forgetting to check I had some at home was a lapse in judgment I will not do again any time soon. As soon as the pharmacy opened this morning, I flew down, filled the scripts and took my meds. It took two hours for them to work, but eventually I slept then spent the day in bed. I awoke feeling floppy and groggy as the meds wore off. The ache is back, the twitching is starting and I’ve just taken my night-time dose hoping it kicks in soon. Floppy and groggy trumps how I was feeling before any day of the week.

If you struggle with self-harm and you need support right now, call the crisis hotline at 1-800-273-8255 or text “START” to 741-741. For a list of ways to cope with self-harm urges, click here. If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

Editor’s note: This piece reflects one person’s experience and should not be considered medical advice. For questions regarding health, consult a doctor or medical professional.

Follow this journey on Simone Lisa.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Restless Legs Syndrome

To the Person Who's Been Ridiculed for Your Pain

An excruciating, electrifying shock strikes my leg, causing me to jolt awake. I turn and face my nightstand and reach out to grab my phone. Another pain hits me, and I wrap myself up into the fetal position. I finally grab my phone to look at the time; it’s 3:12 a.m. It’s Tuesday, and that means [...]

Mom Responds to Bullies Who Made Cruel Meme of Son With Rare Disorder

AliceAnn Meyer documents the ups and downs of special needs parenting on her blog, “Jameson’s Journey,” and she recently discovered internet bullies used a photo of her son and made a cruel meme mocking his appearance. “What compels a person to do such a thing I will never understand,” she wrote on her blog. “There [...]

When My Son Asked If His Friends Left Because of His Autism

Two years ago, my eldest was diagnosed with autism. When that happened, a dear friend of mine said to me, “You mourn the child you thought you were going to have, Joanna, so you can embrace the child you were given.” I would like to say I have done that. When buggy (my eldest) was [...]

This Spider-Man's Secret Identity Makes His Visit to a Cancer Patient Even More Special

For the longest time, my youngest son said that when he grew up, he was going to be a cheetah. Then, after enough people told him it wasn’t possible, he changed it: “Fine, I’ll be a scientist who turns myself into a cheetah.” That persisted until his older brother politely asked him to stop telling people that [...]