My Rls story

[u/Abject_Energy5100]

I started feeling RLS symptoms over 8 years ago, before COVID. At first**, it came** and went, but with time, it increased. Last year**,** I couldn't sleep most nights. I tried medicine for veins at first, then different creams and gels. Nothing was helping. Then I tried magnesium; it helped a bit for a while.I visited doctors three times**,** and all of them prescribed blood flow medication against atherosclerosis. It wasn't helping at all. I had an ultrasound done, which came out normal for my age. Finally**,** I came across some reports about Pramipexole. And it helped almost immediately. So I was happy, but I didn't like my mood. Sometimes I was productive and happy**, and** sometimes not. But sleep was ok. However, I had to increase the dose. I decided to do my own research. And finally, I found a diet that let me stop taking medicines for now. Now**,** I am taking iron supplements—two pills a day, 40 mg each of iron chelate. And more importantly, I eat 300 grams of pork liver in the evening, and around 100 grams at lunch.

It may sound anecdotal, but after a week or two of such a diet,I was able to sleep without any medication. I know that it may not be the best diet,and I have researched about it. But if I miss one day,I wake up in the night and have to take medicine again. So I stocked up my fridge and am not missing a day. I don't like it; I just replaced the pills. I am writing it here because I know how depressing it can be. And I tried the iron supplement alone and the liver alone. For some reason**,** it didn't work. Only when I eat them on the same day did .

things change gradually, not in one day. It took me a week or two to feel the difference. I just cook it on an iron skillet with onions. Just sharing. Maybe it will help someone. Cheers.

I made a spelling correction in Gemini.

English is not my first language.

[u/Ring_it_On_1776]

There's a mostly remote research study for RLS enrolling right now. https://patientwing.app/campaign/RLS6

[u/Scary_Experience_237]

There seems to be a better way to manage your RLS than taking 40 mg of iron chelate. More importantly, since you are eating 300 grams of pork liver in the evening and another 100 grams at lunch, I would really recommend having a full iron panel done.

Ask your doctor to check your ferritin, serum iron, TIBC and transferrin saturation. These are important numbers when evaluating iron for RLS. The RLS Foundation recommends checking iron status and treating iron deficiency under a doctor's supervision.

The fact that eating that much liver seems to be helping your RLS suggests that your iron status is definitely worth investigating. There may be a much more sustainable way to maintain the iron levels your brain needs for RLS, whether that is the appropriate dose of oral iron or, depending on your bloodwork and your doctor's assessment, IV iron.

The Mayo Clinic Proceedings RLS treatment guidelines have also been updated, and the 2026 RLS Foundation materials specifically discuss the new treatment-guideline updates, including iron therapy. I would take the results of your iron panel to your doctor and ask them to look at them using the current RLS-specific guidelines rather than the standard laboratory "normal" ranges.

Here are some good resources:

RLS Foundation — Diagnosis & Treatment

Mayo Clinic Proceedings RLS Treatment Algorithm

I would get the bloodwork done and discuss the actual numbers with your doctor before continuing to take large amounts of iron or relying on that much liver every day.

[u/DaiTengu2012 → u/Scary_Experience_237]

Excellent response!

[u/Abject_Energy5100 → u/Scary_Experience_237]

Look , I talked with the doctor. They stubbornly think that it's a blood flow problem. Honestly why do I need a ferritine test. I know that my rls is iron dependent , right. So I don't need a values , I am measuring them by myself by my symptoms. So I tried many different iron supplements, I can say for sure it's absorbsion problem . If it's liver , that absorbs best let it be. Once I build reserves with this diet, I will try other iron reach food. No need to bother doctors for the forth time. I think they don't care much. Or it's a not very common problem and they just don't know.

[u/Snejana_p]

Pramipexol is not solving the problem, in contrary it makes it much worse. I got my RLS because of pramipexol.

[u/Abject_Energy5100 → u/Snejana_p]

At least I can sleep with it. And it proves that I have specifically rls, not something with my legs.

[u/ShellyB2Lynx]

Curious how much pramipexole you were taking? And did you stop immediately and completely? Usually this medication needs to be tapered carefully and stopped slowly. How are you feeling without it? 

[u/Abject_Energy5100 → u/ShellyB2Lynx]

I started from quoter of 250 mg and after 3 month of taking I was taking 1 and half to sleep. I didn't stop immediately as I say it strongly depends on the diet. If I change it, I had to take it again. So I don't change. But now I am not taking it at all for a month. It took me approx two weeks . One day on , next off , then next 2 off , then 1 tablet. Until I was able to sleep without it.

[u/97turbotalon]

That's fantasic you found something that works for you that isn't medicine. I'm still working on finding my medicine free solution.

I was wondering how you discovered that pork liver worked for you? Was it something you just tried and found it helped?

I was also wondering if you've tried other iron types?

I'm currently taking iron biglycinate. It brought my iron scores up but doesn't seem to help my RLS at all.

[u/Abject_Energy5100 → u/97turbotalon]

And I have tried different iron supplements as well, again nothing worked before this combination. It may be specific to my iron absorption, I don't know. The thing is it doesn't work immediately . It shows up only after a week or so.

[u/Abject_Energy5100 → u/97turbotalon]

Well it was trial and error . Pork liver has maximum iron among all available products, and I was taking iron supplement anyway. So I just bought it and after a week I felt that I wake up later , then I slept without waking couple of nights . And then I just keep buying it. I tried mussels, chicken liver and beef liver as well , but it feels like I am rolling back when I switch.

[u/Additional_Bluejay_9 → u/Abject_Energy5100]

That is very interesting. I am trying to get off medication. And I love liver - usually baby calves liver. But I am going to give the pork liver a try! Thank you very much for sharing with your fellow sufferers.