Help! Restless legs!

[percyval577]

I had some beef the other day and definitely the restless feeling went away. I guess iron was the fix! Now to try to remember to have these tests ran:

I guess zinc was the fix.

 

[percyval577]

@Strawberry have you tried B1?

You could also try B5 and B7. I put them in water and drink only a sip, over a while this then.

 

[Frunobulax]

I guess zinc was the fix.

Never, ever say that something fixes RLS. You might jinx it

Seriously, there are a lot of things that give relief for 1-3 weeks or maybe even just a couple of days and then the symptoms come right back. It's a good idea to wait a few weeks before judging if a certain intervention works.

 

[Strawberry]

I haven't individually. I sometimes take a b complex, but haven't been on it recently as I have misplaced it... What does B1 do?

 

[Frunobulax]

I haven't individually. I sometimes take a b complex, but haven't been on it recently as I have misplaced it... What does B1 do?

Most B complex products contain only a tiny fraction of what we need. I'd try individual vitamins in high doses.

I know B1 from ME treatment, some doctors will give 300mg Benfothiamine a day and some patients see improvement. So this is worth a try anyway.

Haven't heard about B1 and RLS before, but who knows?
B6 (100mg a day) and B12 (1000 mcg) do help with RLS sometimes, B12 has to be taken with folic acid and biotin. Also worth a try.

 

[EddieB]

I know B1 from ME treatment, some doctors will give 300mg Benfothiamine a day and some patients see improvement

Do you know if this can be taken alone, or does it have to be combined with something to absorb?

 

[hinterland]

I got really sick after the holidays, and now that the virus is gone I have really bad restless legs. Nothing is stopping it yet. I’ve taken so much magnesium, potassium, and baking soda and it will not touch it.

WHAT ELSE!

Low Dose Naltrexone, maybe?

 

[Strawberry]

Low Dose Naltrexone, maybe?

Thanks for the reminder! My prescription ran out last month and I keep forgetting to call Dr Kaufman's office!

 

[Strawberry]

Ok now that I have that prescription issue resolved... @hinterland Does LDN affect restless legs? Could it have caused my restless legs by being off the med for a month?

 

[Pondering]

My wife has RLS and is taking a dopamine agonist it works for her when combined with IV Iron and exercise. Thankfully she isn't seeing any of the potential side effects from the dopamine agonist.

 

[EddieB]

dopamine agonist.

I’ve read where dopamine is supposed to help with restless leg. Are her iron levels low?

My gastro had me start taking mirtazapine for nausea several months ago. It's supposed to increase dopamine, but is known for causing RL, and definitely made mine worse. Do you know what she’s taking?

 

[hinterland]

Ok now that I have that prescription issue resolved... @hinterland Does LDN affect restless legs? Could it have caused my restless legs by being off the med for a month?

I have in the past occasionally had restless legs in bed at night, and noticed that this resolved while I was talking LDN. So, in my experience, LDN can be an effective treatment for restless legs.

 

[PatJ]

m very concerned about taking iron, even though the hematologist told me to. Although the RL is better, overall I feel worse, stomach pain and reflux.

Natural sources of iron can be used to raise your iron levels without the common side effects that occur when taking an iron-only supplement. Taking vitamin C or vitamin C rich food at the same can dramatically increase iron absorption. Here is some extra info:

*Increasing with molasses*
From Judee on PR:
I've read where a lot of people who had been taking supplements said taking blackstrap molasses worked better for absorption and their test numbers went up when they used that instead.

*Vitamin C dramatically increases absorption*
From: https://anemiacentral.com/iron-absorption/
[Site includes study references]
* ...the amount and timing of Vitamin C also matters greatly, so just saying that Vitamin C increased iron absorption is not enough...
* Vitamin C’s importance in this piece of the puzzle for iron absorption can’t be stated emphatically enough since iron absorption may even rely on the presence of Vitamin C to occur. In fact, there have been many cases of iron deficiency being resolved only when Vitamin C was added!
* [Absorption] First of all, Vitamin C doesn’t just improve iron absorption, it DRAMATICALLY increases it. This is an extremely well-studied subject, and studies using even minimal amounts of Vitamin C with iron minimally show a doubling in the amount of absorption of iron, and maximally up to 6 times.
* [Dose] The dosage of Vitamin C for the maximum iron absorption is surprisingly small. Basically any amount of Vitamin C improved iron absorption. Even dosages as seemingly insignificant as 20 mg were effective at improving iron absorption,. While larger amounts improved absorption even more, it seems that maximum absorption peaks at just 100 mg of Vitamin C.
* [Timing] This is good news since it’s pretty easy to get 100 mg of Vitamin C when you eat basically any fresh, uncooked fruit. But Vitamin C content drastically decreases when food is cooked or stored, additionally, the _Vitamin C must be taken or eaten at the same time_ as the iron supplements or iron rich meal. That might not sound hard, just have some fresh vegetables with red meat at dinner, right? Wrong. Iron is absorbed poorly or not at all in the evening meal, so your steak is almost worthless for its iron content. This is because iron is maximally absorbed first thing in the morning when the hormone Hepcidin is lowest.

 

[EddieB]

I couldn’t take the iron in pill form, so I did iron patches, which also have vit C. Did another iron panel, got the results yesterday and levels did come up, so I guess it’s working.

This is because iron is maximally absorbed first thing in the morning when the hormone Hepcidin is lowest.

I’ve been putting the patches on before bed, maybe I should be doing them in the morning?

 

[junkcrap50]

I often wondered if RLS is connected to low stomach acid. Most people develop it around 40-50, right at the point where stomach acid starts to drop naturally. And acid blockers (PPIs) seem to be a very common medication among RLS patients.

I'm beginning to maybe think the same thing. Have you found any more info or learned more about this theory? Everything I read online says that low stomach acid & RLS is that it prevents B12, iron, & other mineral absorption, causing deficiencies linked to RLS. Low stomach acid can allow SIBO to develop too. While these mechanisms likely can cause RLS, I wonder if stomach acid has a more direct effect on RLS.

I've had RLS since October and the only cure is Magnesium Citrate at night. Yes, I know low magnesium can cause RLS. However, the past 2 months, I have been on IV magnesium sulfate infusions 3g 2x/week. And I STILL get RLS. I suspect I'm not absorbing magnesium into my cells. But oral magnesium citrate (CALM) still works to ease my RLS. So maybe it's the citrate that's helping. Could citric acid be helping some how? I can't find anything in my online sleuthing.

Ok now that I have that prescription issue resolved... @hinterland Does LDN affect restless legs? Could it have caused my restless legs by being off the med for a month?

Yes, LDN can treat RLS.
LDN Turns Around the Life of a Sufferer of Restless Legs Syndrome
https://www.ldnscience.org/resources/interviews-patients/suzanne-greenwald-rls
Restless Legs Syndrome: Sequential Treatment with Rifaximin and Low Dose Naltrexone
Adapted from the textbook chapter in The LDN Book (2016)
www.gidoctor.net/client_files/file/RLS-Sequential-Treatment-Rifaximin-Low-Dose-Naltrexone.pdf
Lots of info searching LDN + RLS.

@Strawberry, any news or success treating your RLS?

 

[Likaloha]

I have had RLS for years and the only thing that I found that could help it was klonopin. I tried other over the counter meds and nothing else helped it. It interrupted my sleep and kept my husband awake too.

 

[EddieB]

I’m beginning to wonder what I have. Definitely restless leg, but in the daytime or evenings before bed. Doesn’t seem to bother in bed or sleeping. And a lot of muscle twitches. Anyone have this too?

 

[Strawberry]

@Strawberry, any news or success treating your RLS?

Apparently the Benadryl was causing it, so I stopped Benadryl and haven't had restless legs since. But... NOW I CAN'T SLEEP. So now in re reading this thread, I get the reminder of LDN. So I will email the office today and get a prescription filled. I don't like taking LDN when I'm in a really bad crash as it does absolutely nothing and is expensive. So it appears my nearly 6 month long crash has ended, I will begin the LDN again. And... try benadryl.

I’m beginning to wonder what I have. Definitely restless leg, but in the daytime or evenings before bed. Doesn’t seem to bother in bed or sleeping. And a lot of muscle twitches. Anyone have this too?

I definitely get this when I do too much activity, but it does affect my sleep. Not like RLS does, but I just can't fall asleep.

 

[junkcrap50]

I’m beginning to wonder what I have. Definitely restless leg, but in the daytime or evenings before bed. Doesn’t seem to bother in bed or sleeping. And a lot of muscle twitches. Anyone have this too?

Could they be fasiculations? They are tiny muscle spasms. Probable examples on YouTube. They're benign and unknown cause, magnesium deficiency?

 

[EddieB]

They're benign and unknown cause, magnesium deficiency?

Blood test for mag ok, have taken several different types, no help, still taking it daily. Minor compared to everything else.