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Restless Legs Syndrome (RLS) help/discussion

Started by Roger Gray · · 👁 8 views · 87 replies

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nimblemarlin8 nimblemarlin8 Newcomer
1 message
joined Sep 2013
#41 ·
I’d like to grab everyone's attention for a second. For me personally, the only thing that actually worked was Mirapex.
Taking just 0.25 mg in the evening completely stopped that restless feeling in my legs. Since I'm living out here in Texas, I know the brand names might vary depending on where you are, but the most important thing is that it contains Pramipexole. I struggled for years, losing countless nights of sleep and trying every little remedy under the sun, but nothing made a dent. This was truly a lifesaver, believe me. Sending my best to all of you.
urbandrifter62 urbandrifter62 Newcomer
1 message
joined Sep 2014
#42 ·
Keith Fowler48 said:I’ve been dealing with this exact same syndrome for several years now.
I’ve noticed that taking magnesium really helps, and my blood work actually confirms I'm low on magnesium—especially during the summer when I sweat more. There are times when I get a bit lax with my supplements, and then my legs give me a very uncomfortable reminder to get back on track.

For some people, this can also be caused by an iron deficiency, such as low levels of ferrous sulfate.
The best approach is to get a full blood panel done to see if anything is out of balance, which is a pretty common culprit.

For immediate relief, I find that standing up and massaging my legs with aloe vera gel, horse liniment, or something similar with a cooling effect works wonders. I always keep some right by my bedside.
After doing that, I usually sleep quite soundly.

Hi everyone, I’m seven months pregnant and for the last month and a half, I’ve barely slept at all due to these restless leg symptoms. Because of that, my doctor prescribed Neurontin 2 mg. It worked perfectly for the first two nights, but then it felt like it just stopped working (?) altogether. Throughout my pregnancy, I’ve been taking effervescent magnesium and zinc regularly. At my last OB-GYN checkup, she decided my iron levels were right on the edge, so she put me on Ferrous sulfate capsules. From the very first pill, I’ve felt so much better—I still have a little trouble falling asleep sometimes, but I’m finally getting 6 or 7 hours. Before that, I couldn't fall asleep until 5 AM and would only get about 2 or 3 hours of rest.
I really hope this helps someone else out there; I’ve been through the ringer with this insomnia and pacing around the house all night long...
Nicholas Davis4 Nicholas Davis4 Active Member
106 messages
joined Mar 2023
#43 ·
Hi everyone!
I was wondering if anyone here has been diagnosed with Restless Legs Syndrome? I'd love to know what kind of treatment you're using, who provided your diagnosis, and what specific tests or screenings were performed.
Thanks!
jadeharbor81 jadeharbor81 Member
20 messages
joined Mar 2015
#44 ·
Hey there! 😉

To anyone claiming this isn't real—that it's all made up, a joke, or just something we should "get over" (yeah, I saw those comments on this thread)... clearly you've got zero personal experience with this. 😲

After doing my own digging online (finally moving past years of total ignorance), I went to my doctor, who sent me to a neurologist. He ended up prescribing me Mirapex.

I see people up top praising Mirapex—and look, I get it—but I eventually stopped taking it because I wasn't about to become dependent on it. 🙂

Once I quit, the symptoms came right back. Now, I never know what to expect. Some nights I sleep like a baby, other nights I don't sleep at all because of this. For me, it’s not even about how much I've been moving... I could walk all day and be absolutely exhausted when I hit the sack, but the second I touch the bed, it starts up again.

Seriously exhausting stuff. 🐔
placidstag7 placidstag7 Member
12 messages
joined May 2023
#45 ·
Greetings, fellow RLS sufferers! I’ve been feeling this strange, fizzy sensation—almost like Coca-Cola bubbling in my leg veins—all day long, not just when night falls. My only relief is constant movement; the second I try to stay still, there it is again. Isn't it curious? Despite this restlessness, I actually fall asleep quite easily, whereas most people dealing with this struggle only face symptoms in the evening, which makes drifting off nearly impossible.

For me personally, stress acts as a major trigger. When things get tense, it feels like a literal swarm of ants is crawling through my legs. And if I'm forced to sit perfectly still during those times? Well, that’s pure torture.

I’ve heard some of you say that Mirapex works wonders. However, I’m juggling quite a lot: stuttering, social anxiety, TMJ, tinnitus, and various fibromyalgia symptoms. I’m honestly torn on how to manage a cocktail of antidepressants alongside Mirapex, especially since I'm also considering beta-blockers. To make matters worse, my stuttering stems from excess dopamine in my speech centers, and since Mirapex is a dopamine agonist, I’m genuinely worried about taking it (life can be such a headache, right?). What kind of medication regimens are you all running alongside Mirapex? Any opinions or insights to share?
neontrucker23 neontrucker23 Member
11 messages
joined May 2012
#46 ·
I’m honestly just glad I stumbled upon this thread—I’ve been dealing with restless legs for years now, and it’s been quite a journey. To be honest, I start feeling this wave of panic whenever bedtime rolls around, because I know it just means pacing around the house instead of actually sleeping. That restlessness... those twitchy sensations... they usually start in one leg, and if I walk around enough, they seem to settle down for a bit, but then as soon as I finally lie down, they just jump over to the other leg. I tried using some topical creams, but nothing really moved the needle there. Right now, I’m taking 1 tablet of Mirapex, but by the time it actually kicks in, the night is basically over. I end up totally exhausted and just... irritable, I guess? It seems like nobody else here has had much luck experimenting with other options yet.
placidstag7 placidstag7 Member
12 messages
joined May 2023
#47 ·
neontrucker23 said:I’m honestly just glad I stumbled upon this thread—I’ve been dealing with restless legs for years now, and it’s been quite a journey. To be honest, I start feeling this wave of panic whenever bedtime rolls around, because I know it just means pacing around the house instead of actually sleeping. That restlessness... those twitchy sensations... they usually start in one leg, and if I walk around enough, they seem to settle down for a bit, but then as soon as I finally lie down, they just jump over to the other leg. I tried using some topical creams, but nothing really moved the needle there. Right now, I’m taking 1 tablet of Mirapex, but by the time it actually kicks in, the night is basically over. I end up totally exhausted and just... irritable, I guess? It seems like nobody else here has had much luck experimenting with other options yet.

There you have it. Five months have passed, and still, no answers. I find myself wondering: how long does it truly take for Mirapex to become effective? And more importantly, do the symptoms eventually return through augmentation? For me, RLS is an absolute constant. Paradoxically, it actually bothers me more during the day than at night, since once I finally fall asleep, I sleep like a baby. But those "bees in my legs"? They are always there. They intensify with stress and during the warmer months—especially in the summer (perhaps due to iron levels dropping in the brain?). The only things providing even a shred of relief are constant movement, rubbing my legs, and some marginal improvement from Pregabalin.
Maria Allen6 Maria Allen6 Newcomer
7 messages
joined May 2018
#48 ·
neontrucker23 said:I’m honestly just glad I stumbled upon this thread—I’ve been dealing with restless legs for years now, and it’s been quite a journey. To be honest, I start feeling this wave of panic whenever bedtime rolls around, because I know it just means pacing around the house instead of actually sleeping. That restlessness... those twitchy sensations... they usually start in one leg, and if I walk around enough, they seem to settle down for a bit, but then as soon as I finally lie down, they just jump over to the other leg. I tried using some topical creams, but nothing really moved the needle there. Right now, I’m taking 1 tablet of Mirapex, but by the time it actually kicks in, the night is basically over. I end up totally exhausted and just... irritable, I guess? It seems like nobody else here has had much luck experimenting with other options yet.

What kind of jerks are we talking about specifically? I recall there being an episode of House where they actually explain those exact pre-sleep twitches. They are perfectly normal for most people. To put it simply, they happen right as you're drifting off and your brain begins to transition into sleep mode; it sends out these little impulses because it loses track of where your limbs are and tries to "wake" them up to confirm they're still there. If you're experiencing sudden, sharp jolts just before falling asleep, that's nothing to worry about.
placidstag7 placidstag7 Member
12 messages
joined May 2023
#49 ·
Maria Allen6 said:What kind of jerks are we talking about specifically? I recall there being an episode of House where they actually explain those exact pre-sleep twitches. They are perfectly normal for most people. To put it simply, they happen right as you're drifting off and your brain begins to transition into sleep mode; it sends out these little impulses because it loses track of where your limbs are and tries to "wake" them up to confirm they're still there. If you're experiencing sudden, sharp jolts just before falling asleep, that's nothing to worry about.

I suspect what we're really dealing with is that sensation of constant muscle twitching. I deal with that myself, all the time.
Maria Allen6 Maria Allen6 Newcomer
7 messages
joined May 2018
#50 ·
placidstag7 said:I suspect what we're really dealing with is that sensation of constant muscle twitching. I deal with that myself, all the time.

I wouldn't know for sure. Perhaps you might want to try a high-quality magnesium supplement. It helps relax the muscles.
Nicholas Davis4 Nicholas Davis4 Active Member
106 messages
joined Mar 2023
#51 ·
placidstag7 said:I suspect what we're really dealing with is that sensation of constant muscle twitching. I deal with that myself, all the time.


RLS isn't just twitching. That can be one of the symptoms, but it's rarely the main event.
(It could happen alongside RLS, for example.)
Primarily, RLS feels like an intense, unbearable tension in your legs—sometimes accompanied by tingling, almost like an electric current is running through you—but above all, it's that crushing sense of tightness... it makes you feel like your tendons might actually snap if you don't move your legs immediately.
In more severe cases, people experience this in their arms as well.
Moving, walking, or stretching can help ease the symptoms.
One potential cause is iron deficiency, which can also make everything worse.
For me, things became much more manageable once my iron and ferritin levels returned to normal. It was sideropenic anemia. It didn't fix everything entirely, but it reduced the intensity by over 50%. I wasn't looking to take Pramipexole on a permanent basis; I'd rather endure a bit of discomfort than risk dealing with augmentation.

At its core, RLS is a neurological disorder.

When someone claims RLS is purely psychological, they're just showing how little they actually understand the condition.

A neurologist should be treating RLS.

I'm not sure if you've had a neurological workup yet—have you undergone a polysomnography?

Pregabalin is an anticonvulsant, and it has become a common way to treat RLS in recent years; however, it's also used to treat painful neuropathies.
Who prescribed that to you?

And listen, everyone, please don't go self-prescribing iron, magnesium, or anything else before you've even had a proper evaluation.
First, see a neurologist or visit a sleep disorder center.
Get your tests done properly, and then decide on a path forward.

If you start taking supplements left and right without guidance and then head to the doctor, you'll likely end up skewing your baseline results from the very start.
Nicholas Davis4 Nicholas Davis4 Active Member
106 messages
joined Mar 2023
#52 ·
placidstag7 said:I suspect what we're really dealing with is that sensation of constant muscle twitching. I deal with that myself, all the time.

Maria Allen6 said:I wouldn't know for sure. Perhaps you might want to try a high-quality magnesium supplement. It helps relax the muscles.

Here it is. 🤦

I experienced something similar due to low potassium levels. It manifested as some trembling and sudden muscle twitches here and there.

Everyone was suggesting that I should start taking magnesium. 🤦

What did your doctor have to say about that?
Have you conducted any research yet?
Everything seems to be going well on my end. How are things with you?

It really shows how much someone actually knows when they immediately start pushing Magnesium. Nobody seems to give Potassium a second thought. He’s just looking for quick sales; he isn't some high-end specialist selling premium supplements in fancy packaging like Magnesium. Magnesium is just much easier to market and sell.
Maria Allen6 Maria Allen6 Newcomer
7 messages
joined May 2018
#53 ·
Nicholas Davis4 said:Here it is. 🤦

I experienced something similar due to low potassium levels. It manifested as some trembling and sudden muscle twitches here and there.

Everyone was suggesting that I should start taking magnesium. 🤦

What did your doctor have to say about that?
Have you conducted any research yet?
Everything seems to be going well on my end. How are things with you?

It really shows how much someone actually knows when they immediately start pushing Magnesium. Nobody seems to give Potassium a second thought. He’s just looking for quick sales; he isn't some high-end specialist selling premium supplements in fancy packaging like Magnesium. Magnesium is just much easier to market and sell.

Now, look, I was actually receiving medical-grade potassium infusions, and believe me when I say that magnesium was what actually helped. Potassium had absolutely nothing to do with my specific issue. In fact, even today, my potassium remains low and I don't suffer from any cramps, twitches, or tremors. Perhaps the truth lies somewhere in the middle. If it were really that simple to pinpoint why someone's legs are shaking, we would all be surgeons by now. Though, I find such a hysterical response a bit confusing, but whatever... We're all far too mature to be writing endless walls of text over this.
Nicholas Davis4 Nicholas Davis4 Active Member
106 messages
joined Mar 2023
#54 ·
Maria Allen6 said:Now, look, I was actually receiving medical-grade potassium infusions, and believe me when I say that magnesium was what actually helped. Potassium had absolutely nothing to do with my specific issue. In fact, even today, my potassium remains low and I don't suffer from any cramps, twitches, or tremors. Perhaps the truth lies somewhere in the middle. If it were really that simple to pinpoint why someone's legs are shaking, we would all be surgeons by now. Though, I find such a hysterical response a bit confusing, but whatever... We're all far too mature to be writing endless walls of text over this.

"Hysterical," really?

Is suggesting that you see a doctor first instead of playing chemist yourself considered hysterical advice?
🤦

Are you perhaps the same person who hands out advice to take massive doses of vitamins without any proof of deficiency, acting as if you've run every test under the sun?

So, to clarify: advising someone to see a professional is actually very sensible.

After all, RLS falls squarely under neurology, which is a field managed and treated by neurologists.
https://www.mayoclinic.org/diseases-...s/syc-20377168
https://www.mayoclinic.org/diseases-...t/drc-20377174

https://www.hopkinsmedicine.org/neur...e/what-is-rls/
Nicholas Davis4 Nicholas Davis4 Active Member
106 messages
joined Mar 2023
#55 ·
It's important not to confuse muscle cramps with Restless Legs Syndrome.
Nicholas Davis4 Nicholas Davis4 Active Member
106 messages
joined Mar 2023
#56 ·
In Washington, D.C., there are two main places that handle RLS:
https://hospital-example.org/departments/sleep-disorders/
(The first is the primary choice)
Supposedly, Mayo Clinic handles it too https://mayoclinic.org/departments/genomics/
(When I was looking into RLS years ago, Mayo Clinic told me they didn't specialize in it and pointed me toward the sleep disorder center. But that was seven years ago; looking at their site now, RLS is officially listed on their menu.)

By the way, just because a facility is categorized like the local psychiatric ward doesn't mean much. That department doesn't even focus on psychiatry.
Just thought those who might be wary of such facilities should know.
placidstag7 placidstag7 Member
12 messages
joined May 2023
#57 ·
I find myself agreeing with Nicholas Davis4. My psychiatrist actually prescribed me Pregabalin. I have an appointment at the pain clinic this coming Friday, so I plan to bring up my RLS issues with them as well. For me, it isn't exactly a feeling of tension; rather, it’s more like a buzzing sensation—almost like a swarm of bees—coursing through my legs. It offers a momentary reprieve if I move my legs around, which makes me think this is primarily a physical sensation. That said, alongside that buzzing, there does seem to be a slight sense of tension, though I suspect that might just be a byproduct of that constant urge to keep moving my legs.
Brenda Parker5 Brenda Parker5 Active Member
59 messages
joined Aug 2020
#58 ·
placidstag7 said:I find myself agreeing with Nicholas Davis4. My psychiatrist actually prescribed me Pregabalin. I have an appointment at the pain clinic this coming Friday, so I plan to bring up my RLS issues with them as well. For me, it isn't exactly a feeling of tension; rather, it’s more like a buzzing sensation—almost like a swarm of bees—coursing through my legs. It offers a momentary reprieve if I move my legs around, which makes me think this is primarily a physical sensation. That said, alongside that buzzing, there does seem to be a slight sense of tension, though I suspect that might just be a byproduct of that constant urge to keep moving my legs.

For real though, Brenda Parker5 was the one who prescribed you that Pregabalin.😁
placidstag7 placidstag7 Member
12 messages
joined May 2023
#59 ·
Brenda Parker5 said:For real though, Brenda Parker5 was the one who prescribed you that Pregabalin.😁

No, Brenda Parker. 😒 Do you remember me? I was the one who kept persistently recommending Pregabalin to you all through last summer. Does that ring a bell? 😉
Nicholas Davis4 Nicholas Davis4 Active Member
106 messages
joined Mar 2023
#60 ·
placidstag7 said:I find myself agreeing with Nicholas Davis4. My psychiatrist actually prescribed me Pregabalin. I have an appointment at the pain clinic this coming Friday, so I plan to bring up my RLS issues with them as well. For me, it isn't exactly a feeling of tension; rather, it’s more like a buzzing sensation—almost like a swarm of bees—coursing through my legs. It offers a momentary reprieve if I move my legs around, which makes me think this is primarily a physical sensation. That said, alongside that buzzing, there does seem to be a slight sense of tension, though I suspect that might just be a byproduct of that constant urge to keep moving my legs.

Yes, and it is a physical sensation.
For me, the tension in my legs is absolutely overwhelming.
It feels similar to when you flex every single muscle to its limit and stretch every tendon simultaneously. Add some tingling and an electrical buzzing sensation on top of that, and you have it.

This is textbook RLS. The symptoms either show up out of nowhere or get significantly worse in the evening once you lie down (or whenever you're just sitting still, like at a movie theater), and you find relief only by moving your legs (some people even deal with it in their arms).

I actually had to push my insurance provider to expedite a neurology appointment outside of my regular check-ups. This happened after I spent two weeks pacing my apartment until 4:00 AM every single night just to survive. I’d lie down... move my legs... feel a momentary sense of relief... but it was never enough, and I had to keep getting up constantly.

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