I have supplemented iron for 4 months now and my RLS has reduced more and more but still have a bit of sleeping problems. I take no medications beside also Vitamin D.
Last time my doctors checked my blood my ferritin level were in the normal range (around 140). Question is if I should continue taking them?
I really think that depleted my iron stores in my brain back then so how long does it take to replenish them fully?
About me:
I had RLS since early 2017. I think I caused it myself by eating a lot of bitter chocolate (really a lot) and also drinking green tea on a daily basis. To my knowledge both can inhibit the uptake of iron and I also suspect that I was low on Vitamin D. When my RLS was diagnosed my iron levels were also low (about 50).
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LineVec
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I would continue taking the iron. Are you taking it with a little orange juice or some vitamin C at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout, don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night.
However I doubt that you will get much more improvement in your RLS or sleep. I would suggest you get a prescription for gabapentin or pregabalin. Since your RLS is improved you probably won't need much.
Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." However I suspect you probably won't need more than 25 to 50 mg pregabalin or 200 to 300 mg gabapentin. If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thanks for your advice(s). Well I have no medication at all so right now I just take iron or a bit of folate on each other day. Yes, I take it on an empty stomach and feel somehow the effects instantly on my brain. (Maybe subjective, maybe not). I only wake up because I have discomfort under my soles. (No cramps, no movement etc.—>according also to a sleep study). Still thought about supplementing Magnesium or Potassium but maybe those minerals only help to those who have cramps or limb movement during the night.
Yes what you eat can cause RLS. If you take salt in any form (processed food etc) then go cold turkey and just see the results. I went cold for a week and WOW ….night and day. Take care
Thank you so much, Dave, to point out such an alternative. I will definitely try that out. I sometimes eat salami or cheese so I think you might be right that these can be triggers and affect the severity of my RLS during the night.
My legs started to feel tense and sort of nervous and would drastically spoil my sleep and also spoil times when I had to sit still ie Theatre or eating a meal out. I would also ‘kick out’ at night when asleep…. When I eventually got to sleep !!!
My top front of my legs would also seem to get cold. I could almost draw a line around the area affected.
I eventually found out the I had RLS and also the kicking in bed was Involuntary Leg Movements (ILM). My wife would be black and blue !!!!!!
Good news is that I knew what I had but how could I stop this….
I started a contract in Kuwait and the food I ate was mainly all processed and without knowing I was consuming more salt than I should..
My RLS was very, very bad and my sleep was affecting my work and my mental health.. well… I just felt tired and not ‘sharp’ in work. I was getting desperate….
I googled RLS and came across someone in the States saying they had the solution and for $19.99 I received an e book with ‘The fix’.
It only really needed to be an e mail back because across the second page in massive letters was the word SALT and the message was Reduce or Cut out totally.
The book advised to go ‘cold turkey’ with no salt for five days so I ate eggs and chicken breast cooked without salt… WOW I felt alive and active and slept better than I had for ages. I never thought that salt would make so much difference to me.
I would advise this cold turkey method as it will show you how drastic it is and you should feel better. The taste buds in your mouth will also start to ‘come alive’ as salt is actually harming them.. I think.
Apparently, although we have a daily intact amount of salt we never should add salt only get the salt from natural means. Some food has salt naturally. Salt was introduced into our diet due to the fact it preserved meats etc…..so it’s a man made introduction.
So I now to try to prevent RLS
1.Stay away (or try) salt in foods or eat foods with reduced salt
2.Reduce my caffeine intake … never after 16.00 (this includes tea also)
3.Reduce Chocolate and never (if I can help it) in the afternoon
If I have not been so careful or could not help it and start to get RLS I
1.Heat a bean bag in the microwave to quite hot and place it on my legs or in between my legs. It’s got to be hot enough that you certainly know that you’ve had heat there.
2.I use my fists (knuckles) to bang on my legs in the area that I have found to be cold and its strange, but I can feel when I hit the spot, so I am quite hard on the area and that seems to move the circulation of …. I don’t know.. Blood or nerves but it seems to free up the anxiety in my legs.
3.Sometimes if away from home and the hot bean bag, I run a hot shower and concentrate the hot jets on my legs.
Now. The above is what I think, experienced and what I am doing. It works for me and now I know I feel I am in control but not fully as sometimes I’ll eat something with salt in which I can not help but then I will probably end up using the ‘hitting’ method of relief.
Kudos to you.! Wow really a bunch of absolute useful informations which can really come in handy. Thank you so much. I will screenshot yours (if it is okay) and try to implement some stuff you mentioned and come back to you. I agree, pain sometimes work. I used to put pine cones underneath my soles (fixated them with socks) and the pain was a relieve to my RLS symptoms, so I could sleep. Maybe I can also help you out. I don’t know if you still have also RLS at daytime but it helped me to do Yoga Nidra in the afternoon and then the symptoms went away immediately. You can just listen to some YouTube videos for free and do this meditative bodyscan. Good luck and hope you are free of this nemesis called RLS. I can see from what you wrote it was also a living nightmare.
hi Ducatidave thankyou for your words about salt i am a very salty person. for the last week or so my RLs has been most horrible, every night with little or no sleep. after reading your article i will try to cut salt out [cheese on toast every lunch ] the past week im amazed i never connected so heres too tomorrow Thankyou !!! my father had RLs too and he covered all his meals in salt a very heavy user ....
Salt as we use it was introduced as a way of preserving meat etc. So as we only got salt from nature we are abusing our body by adding it as a seasoning. You’ll find that your taste buds will come alive also after … good luck and let me know..
My Ferritin was 49 with raging RLS. Iron supplements did indeed take away the severe RLS. I basically stopped it like 6 months later after going down to just a couple of days a week. Fractured sleep has been a problem since then (5 years) - but getting better all the time. No idea ever why I was so iron deficient at the time. Working for me - quitting alcohol, add Magnesium L-Threonate, waking up - take ibuprofen. (I break caplets in half - so it's 100mg more or less). Ibuprofen is a glutamate (excitable) blocker.
Similar here, maybe it is a long process. I always heard that RLS get worse with time but for me it is the opposite but these are tiny steps of improvement though. Good tip with ibuprofen. I will try that out too at night and I also have some L-Threonate at home. I will come back to you if it is helpful.
Thanks buddy for your reply. It means a lot to me. Interesting coincidence I once ate a lot of meat and felt symptom free for several days but sadly I couldn’t re-establish this condition. But thank you for your insights I will give it a try. At the moment I take iron pills with glycinate as counterion. It seems to work but I guess my progress is slow because I take one pill every second day. Reason is, that I think that “maybe” my hepticidin goes up and inhibits iron uptake.
Hi LineVec, yes I believe you are correct that hepcidin levels will rise when a lot of iron is consumed unless you have extremely low iron stores. Hepcidin has a circadian rhythm as does that free floating (my name) iron in our blood. Hepcidin rises thru the course of the day and begins to recede in late afternoon/early evening after it has done its “dirty” work of sequestering iron out of our bloodstream. I believe this is why RLS is a condition of the night. Because we with RLS lack adequate brain iron reserves we rely very heavily on that free floating iron. When it drops, with a nadir of midnight, we get RLS. Like you, I can feel my RLS dissipate about an hour after taking ferrous bisglycinate. Only I have to take it every night. I do not have the luxury of every other night. I do not believe that raising ferritin levels will solve someone’s RLS issues completely unless they are anemic and that is the cause of their RLS. I believe the iron at night thing is most effective for people like you and I who were never on dopamine agonists or are taking other medications like SSRIs that interfere with the release of dopamine.
Hi SalemLake. Thank you for answering and sharing your story. Yeah really sounds similar to my case. It is like a switch when I take iron but I also think I feel the toxicity of iron sometimes.How does your digestion system deals with the iron uptake during the night?
No, I never feel the toxicity. It never bothers my gut. But I take a kind called ferrous bisglycinate. Yes, iron is a heavy metal, but so crucial to life. Plus, the iron does not raise my ferritin much. Year after year, for many years now, my ferritin is between 50 and 60. I think at one point it was slightly over 100. At least for me, my ferritin makes no difference to my RLS. I think if I got an infusion and pushed it up to 300 or 400 I would feel toxic. I would never get an infusion unless I was anemic. Think about it logically, if ferritin, which remains fairly constant through-out the day, was the main driver of RLS then we should have symptoms all day long, yet most of us don’t? It’s that serum iron, which plummets at night (I think a 40 to 60% drop), that I believe is the main driver behind our nightly RLS. And this drop occurs whether your ferritin is 50 or 5000. So taking some iron at night (basically sneaking it to your brain when hepcidin is low) is a better mouse trap than an infusion
I totally agree. My doctor(s) say/said that iron/ferritin levels are already okay but I also think that they misunderstand that you need the iron to be in your brain because it is an essential co-factor in the brain for the production of dopamine so it is unclear if there is enough (unless they dissect your brain later, lol). Adding to that one of my doctors refused to check the transferrin saturation level and said it is enough to know only the ferritin levels. I found out that high ferritin levels can also stem from inflammation so that is why you also need to check the TSP. Gosh!
Sven, do you have that John Hopkins article? Anemia is a different beast than just having iron storage on the low side of normal. Anemia means not only aren’t you producing sufficient red blood cells, you aren’t producing sufficient dopamine either. And if you’re pre-disposed to RLS, it’s no different than if you were taking a substance that blocks dopamine.
With the 8 months of heme iron supplements did you notice a gradual improvement or was it a light switch at 8 months?
A lot of these RLS and iron studies are flawed because they use subjects with IDA. I’m in the ferritin is unrelated to RLS camp, unless you’re anemic. Recent studies have born this out. Researchers tested oral versus intravenous iron. After six weeks both groups reported what the researchers considered “significant” reductions in symptoms. 8 point reduction on the IRLS scale for infusion group, 10 points for oral iron and something like 6.4 for placebo. BUT, there was no comparison with ferritin. It was waaay higher in the infusion group yet the participants realized no greater benefit.
Keep up the good work Sven. Yes, iron is essentially a cure for those whose RLS was triggered by anemia, just like stopping an SSRI is the cure when someone’s RLS was triggered by that.
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I will come back to you if it is helpful.
My RLS has settled for the time being. Thank you for the information and support!
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