Ironman Club Members: Here’s a few of... - Restless Legs Syn...

Restless Legs Syndrome

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Ironman Club Members

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6 months ago•5 Replies

Here’s a few of the many members of the Ironman Club and their stories. Sometimes you have to scroll down within the post. I only included those stories where relief is complete. Twice as many if I include those who notice an “improvement.” I know there’s many more out there, but these are the ones I have saved over the years.

healthunlocked.com/rlsuk/po...

Jphickory profile imageJphickory

7 years ago

I have been taking ferrous bisglycinate strictly "as needed" for several weeks now. I only take the 25mg dose after I've attempted to wait out the symptoms and let the RLS dissipate naturally. If 60 to 90 minutes go by, and symptoms are still severe, I take the dose of ferrous bisglcinate. Within approx 20 minutes of taking I start getting relief and before I know it I'm sleeping.

I take no other drugs. I'm on the average taking the dose once or twice a week. Never more than twice. i haven't had my iron levels checked yet and that is partly why I'm being cautious about the frequency. Thanks to this forum I have found something I can use to gain quick relief when I'm desperate.

healthunlocked.com/rlsuk/po...

NSAIDs don’t help everyone’s headache. Yet, it’s still the “go to” treatment. Iron at night (every night) should be the “go to” treatment we recommend. Not iron infusions and not raising ferritin. If ferritin is truly an issue with RLS then in this 2024 clinical trial by Dr. Earley, the infusion group should have realized a much greater benefit.

onlinelibrary.wiley.com/doi...

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5 Replies

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6 months ago

AND, if the participants in the above mentioned clinical trial didn’t have IDA, their improvement would have been lower by several points. Here are the results in terms of point reduction for the oral iron group - almost 10 point reduction in symptoms.

IRLS

• in reply to6 months ago

Here’s the improvement for the IV iron group - 8 point reduction in symptoms.

IRLS

• in reply to6 months ago

Here’s an article wherein all clinical trials using iron to treat RLS are analyzed and summarized. Overall, there was an over 6 point improvement (but some of the trials analyzed used IDA patients) so that will skew it higher. Placebo group had a 3.4 less point improvement.

Overall, the results are very… meh.

cochranelibrary.com/web/coc...

Despite all of the above, let’s keep pushing those infusions and/or telling people to get their ferritin up to around 200 - a completely arbitrary unproven number both out there and on this board.

Munroist6 months ago

Thank you for taking the time to compile the information. Can you confirm whether you have followed up to see whether the relief was sustained? We see many people who initially respond to iron infusions, pregabalin and even opioids but find with weeks or months that it doesn’t cover their RLS.

That said I totally agree that it should be one of the first things people try because it is such a simple and easy fix and has pretty much zero side-effects. We’ve seen other people who have done similar things like taking a spoon of iron rich black strap molasses every night which also helped.

I am of the view that anyone taking iron supplements to increase their ferritin would probably notice that they slept well on the nights when they took iron and not when they didn’t take iron and would also make that connection and as such I would have expected it to have greater visibility on the site, but maybe people don’t bother coming back if things are good.

I’m sure you will have seen that Joolsg and Sue frequently mention that some people benefit from this regime. I hope this helps some people.

• in reply toMunroist6 months ago

Yep, I follow up. Don’t want to bug people though. I don’t understand why we and Dr. Winkelman make a big deal out of getting an EXACT ferritin reading??? Except for iron overload cases, iron will almost always be recommended and what difference does a few points (if that) make? Plus, we give people false hope with that 60% figure and raising ferritin…so I think.

The Mayo Algorithm is meant for providers who have access to the complete text of the articles describing the underlying clinical trials that make up the “over 50%” of patients that the algorithm claims iron helps. I’d rather give newbies abstracts of those clinical trials than throw around meaningless figures. It enables them to participate in their journey to wellness.

I try to always explain to new members how and why iron works. At the very least, we should tell people it has been shown that there is no advantage of infusions over oral iron. Since we now know, beyond doubt, that higher ferritin does not equal less RLS symptoms, what exactly is driving the improvement in these clinical trials, especially in the non -IDA population? Is it the overall improved serum iron? Or more specifically, because more serum iron means more of that dopamine pool? That would be my guess.

In terms of every other night dosing, it might be worth it for someone to study (maybe you?) how often it is successful for members on here. Per most of these trials (especially the ones using IDA patients) statistically significant results are seen after six weeks, whether the person gets their ferritin to 35 or 435.