Restless Legs Syndrome (RLS) help/discussion

Not for me.
When I'm asleep, I have absolutely no idea what my legs are doing. Of course, I don't even wake up.
But once I'm awake? That’s when the real show starts.

The last two or three weeks have been a real struggle—it's tough.
I suspect I might be dealing with anemia again. I'm sleeping 11 or 12 hours a day and can barely drag myself around. I feel completely foggy during conversations (🙄, it’s just like when I was anemic before, where I’d talk and then just zone out 😲), and the corners of my mouth are incredibly chapped. Yesterday, one side cracked so badly it actually bled. Even applying grape seed oil isn't helping. It feels similar to how things were during my last bout of anemia. Back then, once I fixed the iron levels, the RLS vanished. Now that it's flared up again, I'm sitting here in the middle of the day feeling like my legs are about to explode; I can't stop moving and stretching them.

Does anyone else find that—even if just temporarily—stretching provides some relief? For me, combining stretching with holding a muscle contraction for a few seconds clears the symptoms, but it only lasts for a few moments, which doesn't do much long-term.

My feet just won't stop aching. A massage is honestly the best remedy—but my husband is getting a bit tired of dealing with my feet constantly...
Ugh, it’s irritating. It isn't just that.
I don't feel the need to move them during the day—not usually—though sometimes at work from sitting too long...
Well, since I diagnosed myself, things feel a little easier, though not entirely. It still isn't quite right.
It can't be that I'm only twitching my legs while I sleep.
The only thing is that my feet hurt, so I could really use a massage.

Oh, and I was reading that iron plays a significant role here.
I've been anemic my whole life. Max was 4—it was much higher once, but it turned out those weren't mine &#128579😉.
Is it actually possible that an iron deficiency caused this?

If you don't feel that overwhelming urge to move your legs, then you aren't dealing with RLS.
You’ll know for sure when you get that sensation like your legs are about to explode or every single tendon is snapping under tension, forcing you to move just to find a moment of relief. Unfortunately, that relief is often just a fleeting window.
I actually hit my breaking point and practically forced my employer to approve my time off for a neurologist after suffering for years. It all came to a head when I was pacing my apartment until 4 AM for two weeks straight, barely able to function. That's when things finally reached a tipping point.
I'm not entirely convinced that foot pain is directly linked to RLS.
It sounds more like your arches are collapsing—something an orthopedist would handle rather than a neurologist.
To get an actual diagnosis and start proper treatment for RLS, you really need to see a neurologist.
Without the classic symptoms we all deal with, I'm not quite sure how you arrived at an RLS diagnosis yourself.
Simply moving your legs in your sleep can happen with RLS, but how can you tell if you're doing it intentionally because of discomfort, or if someone else is just telling you that you move? I suspect you'd have the specific symptoms that plague us, not just leg movement during sleep. People toss and turn or kick in their sleep all the time—I've always been a restless sleeper even before RLS, and that doesn't mean I have the condition.

Well, I am waiting to see a neurologist.
In my sleep, around 3 or 4 AM, my legs just shake...
It isn't that I have this overwhelming urge to move them—not in the way you all describe it.
Instead, I’ll just lift a leg and it starts trembling.
I don't even realize it is happening, nor does it actually wake me up.
My feet, too—I noticed it last night, so I thought I would mention it here.
Perhaps someone else has experienced something similar...
I spend a lot of time sitting at work. I barely even get a chance to use the restroom.
Maybe it is all connected...
Waiting for my appointment.

Nicholas Davis4 said:If you don't feel that overwhelming urge to move your legs, then you aren't dealing with RLS.
You’ll know for sure when you get that sensation like your legs are about to explode or every single tendon is snapping under tension, forcing you to move just to find a moment of relief. Unfortunately, that relief is often just a fleeting window.
I actually hit my breaking point and practically forced my employer to approve my time off for a neurologist after suffering for years. It all came to a head when I was pacing my apartment until 4 AM for two weeks straight, barely able to function. That's when things finally reached a tipping point.
I'm not entirely convinced that foot pain is directly linked to RLS.
It sounds more like your arches are collapsing—something an orthopedist would handle rather than a neurologist.
To get an actual diagnosis and start proper treatment for RLS, you really need to see a neurologist.
Without the classic symptoms we all deal with, I'm not quite sure how you arrived at an RLS diagnosis yourself.
Simply moving your legs in your sleep can happen with RLS, but how can you tell if you're doing it intentionally because of discomfort, or if someone else is just telling you that you move? I suspect you'd have the specific symptoms that plague us, not just leg movement during sleep. People toss and turn or kick in their sleep all the time—I've always been a restless sleeper even before RLS, and that doesn't mean I have the condition.

In my opinion, this doesn't quite fit the profile of RLS, though I am certainly not a doctor.
To be honest, I'm not entirely sure; I have a friend who deals with RLS, but they never mentioned their legs shaking like this.
A neurologist would be able to give you a much more accurate assessment, of course, but from what I can tell, it doesn't feel like typical RLS.
Have you noticed any muscle weakness? For instance, does it feel like your muscles are fatigued, causing your legs to tremble whenever you try to lift them?

Sitting or lying down isn't the cause of RLS—it doesn't create the condition itself—it just acts as a trigger for the symptoms. In fact, the sensations are often most noticeable during periods of rest, especially when someone lies down and everything becomes still.

It makes sense...
Even my primary care doctor was at a loss for words regarding all of this.
Because everything happens while I'm asleep—in the deepest stage of sleep. My rest is so heavy that nothing can wake me...
It used to be that my leg would twitch once every few days.
Over time, it progressed to the point where I couldn't sleep at all because of the shaking. Constantly. Every few minutes...
Now, it has calmed down slightly. It happens every night, but only a few times. It has settled somewhat.
I have never heard of anything like this, nor do I know where to even direct a question to get someone to reach out with an opinion or something...
I thought maybe it was RLS, because honestly, I don't even know how to put this into words.

Nicholas Davis4 said:In my opinion, this doesn't quite fit the profile of RLS, though I am certainly not a doctor.
To be honest, I'm not entirely sure; I have a friend who deals with RLS, but they never mentioned their legs shaking like this.
A neurologist would be able to give you a much more accurate assessment, of course, but from what I can tell, it doesn't feel like typical RLS.
Have you noticed any muscle weakness? For instance, does it feel like your muscles are fatigued, causing your legs to tremble whenever you try to lift them?

Sitting or lying down isn't the cause of RLS—it doesn't create the condition itself—it just acts as a trigger for the symptoms. In fact, the sensations are often most noticeable during periods of rest, especially when someone lies down and everything becomes still.

Open the thread.

To make matters any better, I’ve been dealing with these symptoms all day long. But if there's any silver lining, it's that I can finally drift off peacefully, tuning out both the RLS and the tinnitus. Tomorrow, I'm reaching out to a private neurologist because apparently, Pramipexole isn't just for RLS—it's also supposed to help with depression, specifically that sense of anhedonia and apathy. At this point, why continue to suffer?