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Restless Legs Syndrome (RLS) help/discussion

Started by Roger Gray · · 👁 5 views · 87 replies

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Brenda Parker5 Brenda Parker5 Active Member
59 messages
joined Aug 2020
#61 ·
Give this a shot—it honestly felt like a total game-changer for me when I was dealing with those foot neuropathy issues and that weird electric zapping sensation.

https://www.peoplespharmacy.com/arti...ses-nerve-pain

Doctors usually prescribe Gabapentin or Pregabalin, which definitely does the trick, but adding some R-alpha lipoic acid and benfotiamine into the mix can make a massive difference. Hope this helps you out, good luck.
Nicholas Davis4 Nicholas Davis4 Active Member
106 messages
joined Mar 2023
#62 ·
You should have a neurologist you can actually talk to; you shouldn't just be picking up anti-epileptic drugs on the black market based on a whim.
Anti-epileptics aren't something you play around with, much like dopamine agonists.

For me, alpha-lipoic acid didn't really make a difference—I tried it, but I didn't notice any real change. Still, everyone responds differently.

So, if you're dealing with RLS, did your neurologist prescribe you gabapentin or perhaps pregabalin, or one of those?

This advertisement focuses on peripheral diabetic neuropathy—which isn't the same thing as RLS at all.
It even explicitly states they haven't found studies linking this supplement to RLS. It's just a way to splash money around for marketing.
Brenda Parker5 Brenda Parker5 Active Member
59 messages
joined Aug 2020
#63 ·
Nicholas Davis4 said:You should have a neurologist you can actually talk to; you shouldn't just be picking up anti-epileptic drugs on the black market based on a whim.
Anti-epileptics aren't something you play around with, much like dopamine agonists.

For me, alpha-lipoic acid didn't really make a difference—I tried it, but I didn't notice any real change. Still, everyone responds differently.

So, if you're dealing with RLS, did your neurologist prescribe you gabapentin or perhaps pregabalin, or one of those?

This advertisement focuses on peripheral diabetic neuropathy—which isn't the same thing as RLS at all.
It even explicitly states they haven't found studies linking this supplement to RLS. It's just a way to splash money around for marketing.

Alpha-lipoic acid is only stable in the R-ALA form—so if you weren't taking that, you basically threw your money down the drain. Btw, R-ALA combined with ALCAR is absolute magic.
My neurologist prescribed me Pregabalin 75mg for BFS (benign fasciculation syndrome) and potential SFN (small fiber neuropathy). You can't officially prove SFN unless you do a biopsy.

I deal with fasciculations, twitching, tingling, crawling sensations, all that good stuff...

Between the Pregabalin, R-ALA, ALCAR, and benfotiamine, I feel like a new person. Maybe do a little homework before jumping to conclusions.
With just Pregabalin alone for four months, maybe I felt 15% better at most. With this combo, though? It was a literal game-changer.
I also started a B-complex—specifically B12 and folate in their methylated forms.
advanced forms of B-vitamins, including benfotiamine (thiamin/vitamin B1), pyridoxal 5-phosphate (P5P/vitamin B6), methylcobalamin (vitamin B12), patented Pantesin(R) (pantethine) and 5-methyltetrahydrofolate (folate). These superior forms offer higher bioavailability for reliable supplementation.

This was a randomized, double-blind trial conducted in a hospital setting. A total of 64 consecutive patients (mean age 61 years; range 29-85) with acute backache and moderate sciatica were recruited. The 33 patients in group received 1180 mg of ALCAR daily for two months and the 31 patients in group 2 received 600 mg of R-ALA daily for the same period. The researchers measured changes in clinical signs and symptoms as measured on the Neuropathy Impairment Score in The Lower Limbs (NIS-LL) questionnaire, the Neuropathy Symptoms and Change in The Lower Limbs (NSC-LL) questionnaire, and the Total Symptom Score (TSS) questionnaire. The next level of improvement was how successful were the supplements in improving neurological deficit (as measured by electromyography) compared with baseline.

Both treatments showed significant improvements from the start regarding neuropathy (nerve pain) on electromyography by day 60. While the ALA group saw slightly better mean improvements than the ALCAR group, the difference between the two wasn't statistically significant. Notably, 71% of those on ALA said they needed fewer painkillers, compared to 45.5% of those on ALCAR (p < 0.05). The study is published in The Journal of Clinical Drug Investigation, 2008;28(8):495-500. Commentary by Jerry Hickey, R.Ph.; research indicates that pairing ALA with ALCAR might boost results significantly. Furthermore, a recent study in the Journal of Cellular and Molecular Medicine suggests that combining ALCAR with ALA enhances energy production, antioxidant activity, and cellular repair at concentrations 100-1000 times lower than when used individually in studies involving human brain cells and protection against Parkinson's disease.
Nicholas Myers Nicholas Myers Active Member
163 messages
joined Jan 2012
#64 ·
I have no idea what you were trying to accomplish by quoting this study, but anyway...
The data shows that ALA yielded greater mean improvements compared to ALCAR. Even if the gap between the groups didn't hit that statistical significance mark...

That doesn't support the point you're trying to make. 🤷

And not a single word about RLS, which is the entire point of this thread! 🤔
Brenda Parker5 Brenda Parker5 Active Member
59 messages
joined Aug 2020
#65 ·
Nicholas Myers said:I have no idea what you were trying to accomplish by quoting this study, but anyway...
The data shows that ALA yielded greater mean improvements compared to ALCAR. Even if the gap between the groups didn't hit that statistical significance mark...

That doesn't support the point you're trying to make. 🤷

And not a single word about RLS, which is the entire point of this thread! 🤔


https://pubmed.ncbi.nlm.nih.gov/15616239/

https://www.ncbi.nlm.nih.gov/pubmed/12455197

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2689385/

https://www.ncbi.nlm.nih.gov/pubmed/18078936

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5228439/

https://www.ncbi.nlm.nih.gov/labs/articles/9030365/

https://www.ncbi.nlm.nih.gov/pubmed/15948540

https://www.ncbi.nlm.nih.gov/pubmed/16039110/

http://www.europeangeriaticmedicine....003-7/abstract

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430690/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4353712/

I've actually got about 50 studies saved up on R-ALA—plus a few on myo-inositol and maybe ten on benfotiamine.
If you really want them, I can drop them all here, but just a heads-up: it's going to be a massive wall of text.
Nicholas Myers Nicholas Myers Active Member
163 messages
joined Jan 2012
#66 ·
Brenda Parker5 said:Alpha-lipoic acid is only stable in the R-ALA form—so if you weren't taking that, you basically threw your money down the drain. Btw, R-ALA combined with ALCAR is absolute magic.
My neurologist prescribed me Pregabalin 75mg for BFS (benign fasciculation syndrome) and potential SFN (small fiber neuropathy). You can't officially prove SFN unless you do a biopsy.

I deal with fasciculations, twitching, tingling, crawling sensations, all that good stuff...

Between the Pregabalin, R-ALA, ALCAR, and benfotiamine, I feel like a new person. Maybe do a little homework before jumping to conclusions.
With just Pregabalin alone for four months, maybe I felt 15% better at most. With this combo, though? It was a literal game-changer.
I also started a B-complex—specifically B12 and folate in their methylated forms.
advanced forms of B-vitamins, including benfotiamine (thiamin/vitamin B1), pyridoxal 5-phosphate (P5P/vitamin B6), methylcobalamin (vitamin B12), patented Pantesin(R) (pantethine) and 5-methyltetrahydrofolate (folate). These superior forms offer higher bioavailability for reliable supplementation.

This was a randomized, double-blind trial conducted in a hospital setting. A total of 64 consecutive patients (mean age 61 years; range 29-85) with acute backache and moderate sciatica were recruited. The 33 patients in group received 1180 mg of ALCAR daily for two months and the 31 patients in group 2 received 600 mg of R-ALA daily for the same period. The researchers measured changes in clinical signs and symptoms as measured on the Neuropathy Impairment Score in The Lower Limbs (NIS-LL) questionnaire, the Neuropathy Symptoms and Change in The Lower Limbs (NSC-LL) questionnaire, and the Total Symptom Score (TSS) questionnaire. The next level of improvement was how successful were the supplements in improving neurological deficit (as measured by electromyography) compared with baseline.

Both treatments showed significant improvements from the start regarding neuropathy (nerve pain) on electromyography by day 60. While the ALA group saw slightly better mean improvements than the ALCAR group, the difference between the two wasn't statistically significant. Notably, 71% of those on ALA said they needed fewer painkillers, compared to 45.5% of those on ALCAR (p < 0.05). The study is published in The Journal of Clinical Drug Investigation, 2008;28(8):495-500. Commentary by Jerry Hickey, R.Ph.; research indicates that pairing ALA with ALCAR might boost results significantly. Furthermore, a recent study in the Journal of Cellular and Molecular Medicine suggests that combining ALCAR with ALA enhances energy production, antioxidant activity, and cellular repair at concentrations 100-1000 times lower than when used individually in studies involving human brain cells and protection against Parkinson's disease.

Watch your tone. So far, from what I can see, everyone jumping into this thread is being completely off topic and hasn't offered a single valid argument. We aren't discussing back pain, Parkinson's, or neuropathy here!

As for suggesting or pushing supplements, I've already said: stick to the subject you actually opened this thread for.
Brenda Parker5 Brenda Parker5 Active Member
59 messages
joined Aug 2020
#67 ·
Nicholas Myers said:Watch your tone. So far, from what I can see, everyone jumping into this thread is being completely off topic and hasn't offered a single valid argument. We aren't discussing back pain, Parkinson's, or neuropathy here!

As for suggesting or pushing supplements, I've already said: stick to the subject you actually opened this thread for.

The symptoms for RLS are exactly the same for me—honestly, I feel way better when I'm moving around. If that crawling sensation, tingling, and constant urge to move isn't RLS, then I must have been dreaming during my half-hour chat with a neurologist from the Mayo Clinic.
Nicholas Myers Nicholas Myers Active Member
163 messages
joined Jan 2012
#68 ·
Brenda Parker5 said:The symptoms for RLS are exactly the same for me—honestly, I feel way better when I'm moving around. If that crawling sensation, tingling, and constant urge to move isn't RLS, then I must have been dreaming during my half-hour chat with a neurologist from the Mayo Clinic.

Based on what’s being said here, it’s clear you haven't actually been diagnosed with RLS. Yet, you're offering advice by framing it as if you're managing this and other conditions, which is just misleading everyone else. It's unacceptable.

I’m asking politely: please stick strictly to the topic you started.
Brenda Parker5 Brenda Parker5 Active Member
59 messages
joined Aug 2020
#69 ·
Nicholas Myers said:Based on what’s being said here, it’s clear you haven't actually been diagnosed with RLS. Yet, you're offering advice by framing it as if you're managing this and other conditions, which is just misleading everyone else. It's unacceptable.

I’m asking politely: please stick strictly to the topic you started.

Alright. Look, I was just trying to help, but apparently some people don't deserve it—so fine, go ahead and just follow whatever your doctors tell you since it seems like those "results" are working so great for you. XD
Btw, half of all autoimmune issues and neurological symptoms can be traced back to EBV. For instance, we've known in the US for years that EBV is linked to MS. I was actually writing about this last year, and people just laughed at me because they claim 90% of the population carries it.
You really have to distinguish between acute EBV and the reactivating kind. Take Cher, for example—she's been famous for dealing with reactivating EBV since '96.

https://rachelsnourishingkitchen.com...tein-barr-ebv/
placidstag7 placidstag7 Member
12 messages
joined May 2023
#70 ·
Nicholas Davis4 said:You should have a neurologist you can actually talk to; you shouldn't just be picking up anti-epileptic drugs on the black market based on a whim.
Anti-epileptics aren't something you play around with, much like dopamine agonists.

For me, alpha-lipoic acid didn't really make a difference—I tried it, but I didn't notice any real change. Still, everyone responds differently.

So, if you're dealing with RLS, did your neurologist prescribe you gabapentin or perhaps pregabalin, or one of those?

This advertisement focuses on peripheral diabetic neuropathy—which isn't the same thing as RLS at all.
It even explicitly states they haven't found studies linking this supplement to RLS. It's just a way to splash money around for marketing.

Pregabalin is indeed used for RLS. Medications that boost dopamine levels in the brain, such as Mirapex, were approved by the FDA for RLS a long time ago, but they often lead to augmentation. Because of that, doctors today frequently prefer anticonvulsants.
Nicholas Davis4 Nicholas Davis4 Active Member
106 messages
joined Mar 2023
#71 ·
That was actually an ad for something else (which Brenda Parker5 posted), not about Pregabalin.
Well, I agree with what Nicholas Myers wrote: Brenda Parker5 has her own specific situation and is suggesting her own therapy to people who don't share her exact condition.
Regarding Pregabalin, I know it's prescribed, and some studies suggest it has a lower incidence rate of augmentation.
So, that was just my response to Brenda Parker5 regarding that advertisement—it had nothing to do with Pregabalin.
If I recall correctly, she posted a link to something discussing a certain dietary supplement, noting that they hadn't found any studies linking it to RLS. Again, there wasn't even a mention of Pregabalin in there.
I think you might have misinterpreted what I was responding to and commenting on.
placidstag7 placidstag7 Member
12 messages
joined May 2023
#72 ·
Nicholas Davis4 said:That was actually an ad for something else (which Brenda Parker5 posted), not about Pregabalin.
Well, I agree with what Nicholas Myers wrote: Brenda Parker5 has her own specific situation and is suggesting her own therapy to people who don't share her exact condition.
Regarding Pregabalin, I know it's prescribed, and some studies suggest it has a lower incidence rate of augmentation.
So, that was just my response to Brenda Parker5 regarding that advertisement—it had nothing to do with Pregabalin.
If I recall correctly, she posted a link to something discussing a certain dietary supplement, noting that they hadn't found any studies linking it to RLS. Again, there wasn't even a mention of Pregabalin in there.
I think you might have misinterpreted what I was responding to and commenting on.

But honestly, let's move past it. What kind of treatment are you currently using for RLS?
Nicholas Davis4 Nicholas Davis4 Active Member
106 messages
joined Mar 2023
#73 ·
I believe I mentioned this earlier in the thread.
I was previously taking Requip Modutab and Ferrum.
Nothing at the moment.
My iron levels were down to 10 a few months back, and I haven't followed up since. It seems my RLS is clearly tied to my iron levels, because it has flared up again.
I've been awake since 4:00 AM, pacing around the apartment, trying to lie down for a bit, and now I'm just sitting out on the balcony. The cool air actually feels quite soothing right now.
Kimberly Roberts3 Kimberly Roberts3 Member
11 messages
joined Jan 2017
#74 ·
I've been dealing with RLS for about 30 years now

It hits my legs hard, and honestly, my arms—specifically my upper arms—too much much too often
The pain and tingling are intense... if I don't keep moving, I actually get this nauseating sensation, like I’m about to throw up, even though I know I won't... it's awful
I have to move; staying still just isn't an option for me

About two years ago, I stumbled upon information online about this syndrome, and let me tell you, it was such a massive relief
I genuinely thought I was losing my mind and that nobody else felt this way...

So, I started following a routine based on what I read online, and it has helped me tremendously:

1. Magnesium—there's a whole cult surrounding this stuff, everyone arguing about which type absorbs better than the other...🙄—but look, money doesn't grow on trees, and I found one that works wonders for me. It's a 300-count bottle and I just take one a dayhttps://imuno-protect.eu/shop/trostr...00kaps-swanson
I take it in the evening

2. Selenium—I eat two Brazil nuts every single day. I buy them in bulk at Whole Foods, sometimes they're on sale, and I usually have them in the afternoon or early evening (you can't overdo those)...

3. Walking—lots of walking, and I mean briskly

4. Hiking—ideally twice a week. If I miss a couple of weeks, I can really feel the difference

5. A daily banana and plenty of leafy green vegetables

6. Going to bed at the exact same time every night

7. Keeping the bedroom cool. If the room gets too warm, things go downhill fast

8. Zinc—I get hemp seeds (again, from Whole Foods in bulk or maybe Trader Joe's when they have their weekend healthy food sales) and I add almonds to my breakfast

That's basically the combo that saved me. My symptoms are way less frequent and much milder now; sometimes I go two or three weeks without feeling anything at all...

Lately, I haven't been exercising for other reasons, and I could feel the symptoms flaring right away

You really have to be persistent and disciplined. You can't just try something for a few days and quit... you need to find a regimen that works and stick to it religiously
Melissa Sanchez8 Melissa Sanchez8 Active Member
65 messages
joined Mar 2015
#75 ·
Kimberly Roberts3, have you actually checked your magnesium, selenium, and zinc levels? You mentioned you started a new regimen based on some reading you did, but did you confirm you were actually deficient in those minerals first?
Kimberly Roberts3 Kimberly Roberts3 Member
11 messages
joined Jan 2017
#76 ·
Melissa Sanchez8 said:Kimberly Roberts3, have you actually checked your magnesium, selenium, and zinc levels? You mentioned you started a new regimen based on some reading you did, but did you confirm you were actually deficient in those minerals first?

I did, and they were a little bit below the line...
maybe that's why I was able to just make up for the selenium and zinc through my diet

then there was the anemia issue too...
the body is such a complicated machine, everything is so interconnected...
Melissa Sanchez8 Melissa Sanchez8 Active Member
65 messages
joined Mar 2015
#77 ·
Kimberly Roberts3 said:I did, and they were a little bit below the line...
maybe that's why I was able to just make up for the selenium and zinc through my diet

then there was the anemia issue too...
the body is such a complicated machine, everything is so interconnected...

That’s exactly why I’m asking. My Vitamin D deficiency actually triggers my symptoms. Honestly, this whole science regarding mineral and vitamin sufficiency—or deficits—plays a much bigger role in how disease symptoms manifest than people realize... or will ever realize.
Kimberly Roberts3 Kimberly Roberts3 Member
11 messages
joined Jan 2017
#78 ·
Melissa Sanchez8 said:That’s exactly why I’m asking. My Vitamin D deficiency actually triggers my symptoms. Honestly, this whole science regarding mineral and vitamin sufficiency—or deficits—plays a much bigger role in how disease symptoms manifest than people realize... or will ever realize.

Yeah, there are a ton of factors at play here...
placidstag7 placidstag7 Member
12 messages
joined May 2023
#79 ·
Honestly, today has been a real struggle. I’m just sitting here and... goodness! I don't quite know how it works, but lying on my side in bed seems to soothe my RLS symptoms and that underlying anxiety.

Is anyone else here on long-term medication?
stormywalker54 stormywalker54 Newcomer
4 messages
joined Jan 2023
#80 ·
Hello,
I have been shaking my leg (unconsciously) while asleep. My sleep quality remains normal—it doesn't seem to impact my rest or my daily life at all.
However, it is affecting my husband's sleep...
Has anyone else experienced this starting suddenly during sleep?
I am scheduled to see a neurologist in early April.

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