When the Painful RLS Returns

You know your medications for restless legs syndrome (RLS) are failing you when you start seeing more painful intensity in your symptoms. I have not had that for a bit. Frankly, I don’t miss it.

Painful RLS symptoms in my legs, arms, and torso

Before my neurologist diagnosed me, and after I went off of my painkiller for chronic pain management, my RLS was severe and quite painful in intensity. It was in the legs, arms, and torso. I would try all sorts of things to stop that crawling, deep, persistent, intense sensation that was amplified to a painful level — including trying to twist my limbs up into what was almost a tight hug, as if the compression would suppress it.

I wasn’t sure if this was RLS, given how unusually severe it was. I definitely had no idea what to do about it. There didn’t seem to be anything that worked, and it kept me up all night long because I just had to get out of bed. I couldn’t sleep like that.

My medication is not suppressing my RLS

My medication isn’t really suppressing my RLS well. I am getting a lot of symptoms erratically through the day and quite a bit more so at night. Right now, my feet are vibrating like nuts. But I can ignore the milder sensations if I must. It is when they begin to compel movement that it starts getting really hard to ignore. And then it moves into other body parts.

A few days ago, it amped right up into quite a painful intensity in the early evening. It was surprising. I had forgotten how intense it is, how nuts it feels to experience that insane, creepy-crawly feeling so strongly that it just hurts so much.

Compression may help

Movement doesn't help me, but you might feel like maybe just shaking a limb right off, and then using that limb to hit the other limb. Sometimes that is what I feel like doing — or some sort of Frankenstein thing, like taking them off to fix them up and then stitching them back on. I feel like compressing it tightly may help more, as if it's holding that crawling sensation down.

Since I don’t see my neurologist until next year, I am not quite sure what to do about it. I might have to ask my doctor if she will increase the dosage of my medication, because I can’t sleep like that. And even during the day, it is enough to drive me up the wall.

Trying alternative treatments

All I could do at the time was sit up on the couch, put my feet on the floor, and sort of stomp them and shake them rapidly just to do something and get some mild relief. It didn’t really help. I did take half my medication early and then had to wait for that to kick in.

After that, it occurred to me that there are alternative treatments to try that may ease symptoms in addition to my medication that I still have not tried. Some I have, but some I have not — like maybe a heating pad or a cold pack. Some say one or the other work for them.

Or in my case, maybe compression socks, since that feeling seems to help me? I don’t know, but I really need to explore some things because I am in for a long haul 'til next year.

Do you struggle to manage painful RLS symptoms? What, if anything, has worked for you to reduce your symptom severity? Share with us in the comments below.