a woman awake at night, looking tired and holding a mug of tea

Rarely Seen During the Day: When RLS Keeps Me Up All Night

After experiencing a few rough nights and days when my restless legs syndrome (RLS) has been metaphorically kicking my butt all over the house, I thought I would ask this community something:

Do your RLS symptoms get worse or better the more fatigued you get?

Terrible RLS symptoms

When celebrations are happening within your household; or you have been invited out (taking the risk of a flare-up in public), resulting in you being totally worn out; or as I mentioned before, you have had a week of rough nights with your RLS making you suffer of a night and the strain on your day resulting in an inability to sleep, are you crawling the walls or whacked out comatose?

My usual distractions are not working

The reason I am asking this is I am 2 days into the most horrendous week of RLS! Nothing is helping to distract me. I smell like an 80-year-olds perfume cabinet (i.e., smothered in lavender). Add in the excessive intake of calming teas, and I'm surprised I haven't drowned yet.

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Heated blankets, sheets, throws, weighted blankets, and microwaved teddies aside, the unnecessary creepy feeling in my legs is driving me insane. My husband threatens to chain me to the couch as he is so fed up with me pacing the hallways. Apparently, I resemble an expectant father in the 1940s.

Trying to tire my body out

In the hours to come, I am going to push my poor body further by attempting to weed the garden. I am forever hopeful that the added movement and strenuous activity will throw my body into overdrive, quashing the annoying feeling in my legs, allowing me to get some shut-eye this evening.

When you have had a prolonged period of inactivity, your muscles scream with lactic acid if you so much as pick up a trowel, let alone dive headfirst into an entire garden rearrange in the name of sleep! Oh, the things we do for sleep...I wouldn't mind if it has a purpose, my lack of dreamtime. Unfortunately, it doesn't. It's just wasting further time.

Thinking outside the box

I regularly search through medical websites to see if I can find any new-fangled thing that could help with RLS. Maybe it was due to the sheer frustration of my legs refusing to allow me to sleep (I shave them, what more do they want from me?!), my search engine farming directed me to a site that threw up an interesting article, originally published in 2006.1

I don’t understand how I haven’t seen it before, but it raises an interesting question. Does anybody out there use a nasal CPAP (n-CPAP) machine when you sleep? There seems to be an association of sleep apnea patients who also suffer from RLS and the study found that patients with obstructive sleep apnea and RLS showed a favorable response to their symptoms of fatigue and sleepiness and severity of RLS on n-CPAP therapy.1

Keep it in the family

Whilst considering if I could pay someone to chop my legs off just to feel some relief, I stumbled across a pamphlet advising newly diagnosed patients on how to cope with their diagnosis and symptoms. Startingly, it advised that RLS can have a genetic link, not the sort of gift you really want to give to your child. I’m sure they would rather receive a festering bag of rotting meat than RLS!

If you have parents or children who also suffer, do you congregate in the lounge, exercise together, or try to find relief from your limbs together? Or have you found that one thing works for you but does not for the others? I wonder if ice baths help?

Lonely nights with RLS

Spending most nights awake whilst the whole time zone is asleep can be very lonely.

Finding others who also resemble Dracula (pale white skin, dark circles round their eyes, while desperately searching for somewhere dark to sleep in the day) can be rousing, as at least having someone to text or message means you are not alone. Find your RLS buddy!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RestlessLegsSyndrome.Sleep-Disorders.net 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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