RLS - Latest News

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

  • 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. ;)

  • 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.

  • 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.

  • 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 ?

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

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

  • How long did it take to settle your legs down?

  • 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/

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

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

  • 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???

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

  • 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!!!!

  • 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.. :(

  • 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/

  • 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.

  • 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.

  • 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...

  • 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.

  • 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. :)

  • 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

  • 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. :(

  • 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

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

  • 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

  • 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!!!

  • 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.

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

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

  • 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

  • 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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