RLS - Latest News: Doctors offered no... - Restless Legs Syn...

Restless Legs Syndrome

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RLS - Latest News

DicCarlson profile image
36 Replies

Doctors offered no help. I just happened upon this and it is just the ticket - IRON - even though my Iron is in the normal range "Since the 1950s, it has been known that iron therapy, even without the presence of anemia has benefits for RLS symptoms. Studies have shown a strong relation between body iron stores as determined by serum ferritin and the severity of the RLS symptoms. A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy (325 mg ferrous sulphate twice a day on an empty stomach) on average improved RLS symptom after 3 months." I use Chelated Iron - Albion Ferrous Bisglycinate Chelate 18mg - apparently crosses the blood/brain barrier more readily and no side effects like constipation. Videos and more info here hopkinsmedicine.org/neurolo...

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DicCarlson
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36 Replies

Yes, most of us know about the connection with iron. Some it works for, some it doesnt.

nightdancer profile image
nightdancer

I have to agree with Elisse. Yes, most of us have been studying the brain blood barrier, and how we absorb iron or not. But thank for the link! Some people may not have read that yet. Someone posted it several times before, but always nice to be reminded of it. I have it bookmarked. ;)

nightdancer profile image
nightdancer in reply to nightdancer

And, iron never helped me, even after we got my ferritin way up with iron infusions. But, for some , could be a help. Thank you for posting.

Madlegs1 profile image
Madlegs1

As I've said before when this came up- like nightdancer- my ferritin is way up (1200) and I have raging restless legs. Obviously my brain is a bit thick and doesn't know how to suck in some o dat ferrous muck.😅😡 Thank goodness for opiates.

But thanks for the link.

Angelaanddanny profile image
Angelaanddanny in reply to Madlegs1

Thought I would update you . Having got my 1mg cabergoline which I took successfully for 6 years before 7 years on pramipexole i took it on Saturday night , after 20 mins the restlessness was totally off the scale. I had NO sleep at all , finally at 7am i felt as if i was going mad so took myself off for a 2 hour walk. Last night I took a small dose of pramipexole and slept for 12 hours . I see neurologist at end of month .As a matter of interest what do you take ?

Madlegs1 profile image
Madlegs1 in reply to Angelaanddanny

I take Oxycontin 10 at night, and 5 in the morning. Some insomnia and itching for first month- now stable and no restless legs.

DicCarlson profile image
DicCarlson in reply to Madlegs1

Pain meds are a therapy. I actually use just advil to help for sleep - same pathway I'm sure.

Whitebuffalo profile image
Whitebuffalo

How long did it take to settle your legs down?

DicCarlson profile image
DicCarlson in reply to Whitebuffalo

My RLS came on very suddenly and severe. At the worst, I would lay down and my legs would start in then immediately cramp. I tried every possible Mg supplement - nothing. I figured out that maybe I could sleep a little with my legs near vertical with pillows and cushions - Maybe 2 hrs/night. I just kept reading on the internet. I knew about Iron - but I was normal (49) and being a male, iron supplementation is rarely recommended. So, I never went that way. I discovered the Hopkins website and the Chelated Iron supplement - tried it for a week and stopped. It had helped but I didn't make the connection because I was taking so many other supplements. Stopping the Iron, RLS came roaring back. Much more here rlcure.com/

Whitebuffalo profile image
Whitebuffalo in reply to DicCarlson

How many 19mg tablets do you take? I will try.

DicCarlson profile image
DicCarlson in reply to Whitebuffalo

I have taken it just once, but recently started to do 2/day. Take it with Vit. C - it helps with absorption.

Whitebuffalo profile image
Whitebuffalo in reply to DicCarlson

I am confused do you take 18mg or 25mg? Others on here say you CANNOT take with food or other supplements??? And you have to take one hour before bed???

DicCarlson profile image
DicCarlson in reply to Whitebuffalo

18mg - away from other supplements and food, on an empty stomach with vitamin c

Whitebuffalo profile image
Whitebuffalo in reply to DicCarlson

Put bisglycinate and iron in search box above There are many people recommending and in thyroid group too

BIt of a misleading title Latest News followed by Doctors offered no help - that is old news!!!!

I've been taking Iron for months now and still no let up but I do know it helps some - just wish I was one of those some!!!!

Whitebuffalo profile image
Whitebuffalo in reply to

Iron helps you some? Have you ever tried two tablets before bed?

Very old news.! As this "iron" fix has been posted more than once and by the same person. Like you raffs iron never helped me either i am not one of those some.. :(

in reply to

Not cool!

in reply to

Did I mention that this is rude? DicCarlson sincerely wanted to share his good experience with others and HELP others. Then you go and throw a wet rag on it like you have done so often before. As it turns out, the iron has provided Raffs with relief.

DicCarlson profile image
DicCarlson

My doctor said Iron is normal - until I read the Hopkins page I never would have tried to supplement with Iron. Many consider that it is low Iron in the brain - somehow controlling Dopamine - that causes RLS. So what causes low iron? It is probably chronic inflammation. Most info I use I got here rlcure.com/

in reply to DicCarlson

I am not keen on that site you have put a link too. Mostly because he states he has a "cure" for RLS and doesnt like people saying there isnt a cure for RLS. The inflammation connection to RLS is just theory.

Madlegs1 profile image
Madlegs1 in reply to DicCarlson

That doesn't make sense-( not you Elisse - the previous post)-- I have very high ferritin level-most probably caused by inflammation. The opposite of what is being posited above.Is there actual scientific verification for any of this?. My high ferritin is completely asymptomatic and they can find no cause for it. But I am worried about the consequences of high iron being a cause of numerous " bad things" to happen to me in the future. I have primary rls exacerbated by spinal surgery.

I'll check out that site now.

DicCarlson profile image
DicCarlson in reply to Madlegs1

This is an incredibly complex biochemical reaction. My iron level is in the normal range, 20-380 for men (49 ng/ml for me). My doc said - normal, don't do anything, yet John Hopkins Medical says supplements can help - and they have. hopkinsmedicine.org/neurolo...

Whitebuffalo profile image
Whitebuffalo in reply to DicCarlson

Agreed, very complex but worth it. When I finally got the byglycinate I took it every morning religiously for a week and it did nothing. Then I went back and re-read some posts and started to take it about a half hour before bed. BINGO. No RLS since. When it's particularly bad I will take two of them. I found someone else who takes two on another site plus he takes wheat grass or something as follows----

I've had RLS since I was a kid and now I'm 55. Its definitely miserable and exhausting. Living sleep deprived and working at a desk all day wears you down. I've tried a lot of things over the years. I've take Requip off and on but I don't like the drugged feeling the next day. Lately I've been taking iron bisglycinate before bed. It usually helps but lately I've been drinking a mix of a tablespoon of barley grass powder mixed in about 8oz of water and 8oz of Bolthouse green goodness (a mix of fruits, spinach, and other veggies). I drink it about an hour before bed and take 25mg of the iron. I take another 25 mg of the iron just before bed. So far it works every night without other medication. No more getting up to take extra hot showers or stretch in the middle of the night. Hope this helps.

in reply to Madlegs1

If you want to know a proper educated answer from someone who knows about RLS then you know who to email, Dr. B will know. :)

Graham3196 profile image
Graham3196

Some people have found relief by following the irritable bowel syndrome diet called the FODMAP diet. It wont help everyone and it may be complete cure or just a reduced level of the symptoms. It was developed at Monash Universtity and there are institutions in the US and UK that can advise. See the Monash FODMAP web site for details but you really need an experienced dietician or a helpful doctor to do it because it is restrictive and a huge pain to follow. If you have bad RLS the diet is nothing. Its been a great benefit to me although not a complete cure.

It is definitely worth the effort to give it a try.

Cheers

Graham

Amyb123 profile image
Amyb123

So, I take it on daily but my iron level is still 4. 2 weeks before my period begins, my legs start up. Doctor said there is no connection, but there must be! Does anyone have any suggestions at all? I paced the house until 4am. :(

Linda_pink profile image
Linda_pink in reply to Amyb123

My rls is also worse just before my period, in fact I used to get it only for a couple of nights a month which I could cope with. Now have it all the time that I'm heading for menopause so wondered if it was a hormonal thing. I bought Magnesium oil and have been using that last few nights and legs have been better. Maybe just coincidence but maybe worth a try x

Amyb123 profile image
Amyb123 in reply to Linda_pink

I do take Magnesium every night. It doesn't seem to help. :(

Linda_pink profile image
Linda_pink in reply to Amyb123

The one I got is an oil spray which I rub on my legs at night. It's called "goodnight". I also take iron tablets. Trying to avoid drugs if I can. Hope u find something that helps u x

Amyb123 profile image
Amyb123 in reply to Linda_pink

Oh cool. Yes, I also take iron pills, but my iron is still very low. Not anemic, but iron is a 4. I'll need to look for the oil spray. I literally just took myself out for a 30 minute walk in my pj's because of my stupid legs. It's 2am here!!!

DicCarlson profile image
DicCarlson in reply to Amyb123

If that is your Ferritin level it is really low. I would consult your Dr. and show him he research from the Johns Hopkins website about Iron supplementation.

Amyb123 profile image
Amyb123 in reply to DicCarlson

My doctor is the one who tested my ferritin. And put me o the iron supplements.

Linda_pink profile image
Linda_pink in reply to Amyb123

Aw bless you x I haven't been outside usually just walk up and down the stairs x

Linda_pink profile image
Linda_pink in reply to Amyb123

Have been using the oil spray for 10 nights now and have only had 2 bad nights, which is really good for me x now getting around 6~7 hours sleep which is amazing. Partner much happier too x

DicCarlson profile image
DicCarlson

Before RLS I tried Mg supplement of every kind - there are lots. Anyway - it became counter-intuitive - I was trying to get better sleep - all the Mg I tried excited me and kept me awake, like caffeine only different. Then when RLS kicked in I switched to Magtein (Magnesium L-Threonate), and Dr's Best Chelated Mg - much different. Mg should make you drowsy.

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