It is the day after Thanksgiving, and I should be posting about all the things I’m grateful for. I did have a wonderful Thanksgiving with a lot to be grateful for. I also had an entirely sleepless night, so it’s time for this post, instead.
I’ve started writing this a bunch of times and thought about it a million. I want to describe what it’s like to have severe Restless Legs Syndrome, because it’s the dominant force in my life right now and has been part of my life for 20 years, yet I don’t know anyone else who has it like I do. So, that means I can’t share with a single person something that affects me so. Unlike love, unlike grief, unlike traveling, unlike insomnia, unlike dieting, unlike Covid, unlike having a pet, whatever. No one I know knows what I mean when I say I have severe RLS.
(Everyone knows when Kramer on Seinfeld complained that his girlfriend had “Jimmy legs” that woke him up. Everyone knows when someone can’t sit still. That’s not what I have.)
I could tell you a little about the chemistry, the hormones, the biology behind this. Something about your serotonin in your brain being whacked out. About having to take dopamine agonists. I could tell you about how those drugs were the big treatment a while back. And when people’s symptoms got stronger, or started earlier in the day, or involved more than just the legs, doctors prescribed more of those dopamine agonists. For years. About how, recently, researchers learned that those meds weren’t helping anymore, no matter how much you took. About how, for some people, the dopamine agonists started creating a feedback loop where they change the functioning of the brain pathways that have to do with movement, with sensory processing, and – the kicker- with dopamine regulation. How those meds, over years of use, screw with the way these parts of your nervous system talk to each other: the basal ganglia, the thalamus, the spinal cord, the cells in your brain that depend on iron. These get so screwed up that you are experiencing RLS basically all the time. You can not stop moving.
The trend now is that neurologists don’t prescribe those drugs at all, when they used to be the wonder drug for rls. Because, now we know that, if those drugs stop working, if they start making your rls worse, you can’t just stop taking them. Your symptoms get even worse as you taper off. You’re basically screwed. As of last year I was taking more than four times the highest recommended dose of these meds (this was prescribed to me), and I’m just now tapering off. My brain is whacked out due to the condition and now due to the drugs used to treat the condition.
What does all this feel like? I haven’t even tried to describe this. I’m going to step all over toes if I liken it to opioid withdrawal, although opioids are prescribed during withdrawal for these meds. It’s similar pathways, similar screwed up brain chemistry. You pace. You fret. You are exhausted because of chronic sleep deprivation, but your body won’t relax. Can’t relax. It’s like trying to sleep on a bed of hot coals.
I can describe what sometimes lessens the symptoms for me. Let’s say I’m in bed exhausted, let’s say after weeks of 3 hours of sleep a night. I somehow fall asleep, miracle, but I suddenly wake up and then the restlessness hits me harder than when I first got in bed. Harder than when I paced to watch tv at 7 pm. Harder than when I obsessively snacked at 3 pm. At this point, making several parts of my body work at once helps. Eating in bed under the covers while listening to a podcast. Playing a puzzle game while listening to a book on tape. Watching a tv show on my phone while doing cross stitch. Engage the brain enough to distract it from telling the nervous system to engage, but not so much that sleep won’t come when a moment of relaxing hits. The challenge is such a constant companion with sleepiness for me that I don’t think I’d know how to simply fall asleep any more even if I could.
When I get out of bed out of frustration, I often fix food not because I’m hungry, not because I want to eat whatever it is, not even necessarily for the comfort of it. I need to pass the time moving. Making food for a half hour, eating for ten minutes, cleaning dishes for ten minutes—that’s moving my body and using my brain, lightly, for almost an hour, which is a welcome break from the restlessness in the middle of the night.
I’ve tried (and still do some of this): Good sleep hygiene. Hot baths. Slow yoga. Magnesium glycinate. Gabapentin. Magnets on my earlobes. Sleep podcasts. Meditation. Melatonin. Tonight after I went to bed and then Tracy went to bed and Banjo went to bed, I watched a tv show in bed, read my book, got out of bed and ate, watched another show on the sofa, finished my book. Got back in bed and listened to a podcast. I took a lot of extra meds (not the dopamine agonists). Now it’s 3 am and I’m in the bathtub and writing this on my phone with one dry finger. That helps. (Edited to add: I ended up getting zero hours of sleep last night.)
How can this be? Apparently I’m in the eye of an RLS storm.
- I’m tapering off the bad drugs
- I’m between neurologists because of the move
- Hyperthyroidism exacerbates the excited nervous system
- Beta blockers from the hypothyroidism make the RLS worse
- I tried an iron infusion but had an allergic reaction, and steroids the nurses put in my IV so my throat wouldn’t close up jack up my nervous system, as well.
- The more I don’t sleep, the worse my rls is, and the more I don’t sleep.
Hope and help are in sight. Like I said, I’m tapering off the bad drugs. I have an appointment with the thyroid surgeon for a minor procedure to determine the date of surgery next week. I have an appointment with a sleep neurologist – in May. I’ve been told that everyone in this sleep practice is trained in rls. But I doubt they have experience with “extreme augmentation,” which is my rls level. I have an appointment with a sleep psychologist in April. My primary care provider has been consulting with a neurologist who does have experience in augmented rls.
In the meantime, I do my best to pass as someone with insomnia. Or, someone with hyperthyroidism. Or, someone with rls. Really, they are a mean gang all together, and I can not describe what’s it’s like under their boot.
