Restless Legs Syndrome (RLS) Discussion Board

Dear Friends
I am a longtime RLS patient whose symptoms began classically with mostly the legs being affected. After a prolonged augmentation, my symptoms became primarily arms and upper back. Most recently, I am suffering from ongoing spasms of all major muscle groups (calf, thigh, hips, upper back). The spasms travel between these muscles. Has anyone else had similar symptom history? Thank you.

Izzy, I just saw your post (haven't been here for awhile because I have been pretty much nonfunctional) and noticed nobody replied. I too had classic RLS symptoms (sx), although they were in my hands, not my legs, until I augmented on ropinerole. Since then my sensory sx, i.e. URGE to move has been replaced by motor sx, i.e., involuntary twitching and spasms. My sensory sx are not actually gone, they are just easily suppressed by my opioid medication, whereas the motor sx are very resistant to treatment and plague me 24 hrs/day, whenever I try to sleep, nap, rest or relax. I have both jerking movements in my extremities, upper and lower, and also spasms of my torso, specifically my chest, abdomen and diaphragm. The chest spasms often cause me to exhale suddenly like a snort. These involuntary spasms are often preceded by an internal "twitchiness" throughout my chest and body. This continuous twitchiness, and intermittent spasms, make it impossible to nap or rest even when I am totally sleep-deprived.

One other interesting observation: Anxiety, or even a single anxious or depressive thought, sometimes triggers a spasm. Otherwise, they are triggered by trying to relax.

Does this sound anything like what you have? BTW, I posted a similar question on the UK RLS forum and someone replied who had the exact same sx as me.

My RLS has progressed pretty similar to yours. It began solely in my legs with that urge to move sensation, and now it can happen all over my body and is more like an involuntary spasm with a split second of forewarning. When I'm not treated adequately with my opioid medication the spasms are unrelenting.

Similar symptom progression: from classic need-to-move twitchiness to, twenty plus years later, sudden energy build-up—bordering on a cramp—in my hip joints releasing within seconds a powerful spastic kick. Happens in only one hip at time but left hip more often than right because I suspect osteoarthritis/inflammation. Resistance is futile: it only increases energy build-up and spastic discharge. Energy build-up and spasm will go all day/night untreated. Takes hours for buprenorphine transbuccal film to catch up. Misery in meantime: no relaxing, no rest, hard to focus on anything dreading next spasm, all but impossible to appear “normal” in work, well, any public setting.

Nothing in my non-medication toolkit helps: warm mag chloride bath soaks, stretching, light yoga postures, walking, massage, nada. It’s a tough one to drive back once it’s started.

Open to any suggestions. It’s been going on for weeks

Bridgercan wrote: ↑

Thu Nov 23, 2023 9:19 pm

Similar symptom progression: from classic need-to-move twitchiness to, twenty plus years later, sudden energy build-up—bordering on a cramp—in my hip joints releasing within seconds a powerful spastic kick. Happens in only one hip at time but left hip more often than right because I suspect osteoarthritis/inflammation. Resistance is futile: it only increases energy build-up and spastic discharge. Energy build-up and spasm will go all day/night untreated. Takes hours for buprenorphine transbuccal film to catch up. Misery in meantime: no relaxing, no rest, hard to focus on anything dreading next spasm, all but impossible to appear “normal” in work, well, any public setting.

Nothing in my non-medication toolkit helps: warm mag chloride bath soaks, stretching, light yoga postures, walking, massage, nada. It’s a tough one to drive back once it’s started.

Open to any suggestions. It’s been going on for weeks

Sounds pretty miserable, Bridgercan. You typed this a few days ago...how is it going now?

The only time I had anything like that was when I had augmentation. It was constant and truly awful. If I was standing, the leg would kick anyway, making me have to grab something to prevent falling. The best I could come up with was that it as periodic limb movements during wakefulness.

What medications are you taking?