A Massive Influx of Caffeine and RLS

I know caffeine can be a trigger for some of us with restless legs syndrome (RLS). I honestly never thought much of it, since I drink a lot of caffeine and it just doesn’t seem to impact me much in any way at all.

However, since I have developed post-COVID sleep issues that have complicated my existing sleep issues (and made a massive complicated mess of my sleep deprivation), well, I'm sort of curious about how much caffeine is "normal."

My doctor was shocked by my everyday caffeine intake

I need something serious to boost me so that I don’t fall asleep in public, and so that I can get through the day at least half-conscious, instead of this never-really-asleep, never-really-awake sort of "blah" state and spontaneously conking out in the middle of doing something.

My doctor once asked me how much caffeine I drink in a week. After doing some advanced calculus, I have to say she was shocked and appalled at my response of how much I have in a day. I read that somewhere around 8 cups of coffee or 10 cans of pop is, like, the max. So I get how she was a little surprised that I had around 15 cans of diet coke, a couple of cups of coffee in the morning, and then tea at night.

I added water to my day between pops

It isn’t like I haven’t reduced it before to see if it helped with migraines or sleep or any change at all. It doesn’t. I just have a hard time buying diet coke caffeine free, and I love diet coke. And without a suitable substitute to drink, that is how I roll. I am constantly thirsty, so it is basically that I have to have something to drink at all times. ALL. TIMES.

For my doctor, I did reduce quite a bit, and added bottles of water between those pops just to throw that into the mix — which leads to a lot more peeing, to be honest. She was pleased with my progress.

Realizing my caffeine intake impacts my RLS symptoms

As you can imagine, if you feel so tired you are on the cusp of sleep constantly, caffeine is sort of appealing. And before I leave the house I try to drink a crap-ton of caffeine in these power drinks to help me stay awake enough that I don’t fall asleep.

So this time, when my doctor asked me about my caffeine intake, I said honestly, "A lot. A whole lot more." I get that it isn’t the best solution, but neither is public napping.

Imagine my surprise when... it turns out that if I have an excessive amount of caffeine, my RLS goes seriously nutbars. It comes on strong whenever it wants. No regular timeline, but that might be because of my fractured, erratic sleep. But it is so crazy strong I need medication at all different times of the day. It is like an RLS storm. Insane symptoms. And I totally bring that on myself.

Waiting for a sleep study to check for other sleep problems

It is mostly in my legs, hands, and arms at this point. But it is getting to that painful point, so I am having a bit of a dilemma with this. I have to find a way to stay awake and alert, but I do not like severe RLS that I can’t manage at all, either.

All I can do is wait for a sleep study and see if they can diagnose this new sleep problem so it can be treated with something other than caffeine. I sure hope that happens soon.