I’ve finally bought some iron supplements in 20mg capsules. Just wondering how much I should take to combat RLS? My blood ferritin levels are normal for a “normal” person, but I know us RLS sufferers need higher levels.
Also what’s the safe maximum?
Cheers!
Serum iron should be above 60, serum ferritin above 100.
Not sure what a safe maximum is- but some people on this site have found that their RLS only improves after ferritin is raised above 350. Many doctors would consider that way too high so I think it’s probably best to raise yours to above the levels I mentioned above. It’s actually very difficult to raise levels by taking oral supplements so I wouldn’t worry too much that you might exceed a ‘maximum’.
Thanks. My serum ferritin was just over 100 I think. My doctor suggested I take a supplement so it’s interesting you say it’s unlikely to work. I’ll just have to see if the symptoms improve.
No I didn’t mean to imply it’s unlikely to work. On the contrary; raising levels improves RLS in 50% of sufferers who have iv Iron infusions. 100 is a good serum ferritin level & you can raise it higher. I managed to get to 200 at one stage but it dropped back to 150 ( common for us). Taking oral supplements every other night has been shown in studies to raise levels faster than taking every night. It fools Hepcedin.
How are you getting on with your iron supplement? I've had one hell of a day , just about to commit suicide......no I wouldn't do that.....have a strained back so between that and my legs giving me no peace all day...you understand how I felt.
Sorry to hear that you’re struggling at the moment.
I’ve only just started with the iron capsules, so can’t really say yet. I’m going to try taking double the dose every other day at bedtime, and see how that goes.
Hope you have a better night tonight.
Thanks, still wide awake .
You should take much more than 20mg capsule, I now take one capsule of 210mg ferrous fumarate every night. I was prescribed 420mg when my levels were considered below RLS-sufferer needs and after 3 months the situation returned to normal; i.e. I wake up only once in the night, usually after exactly 3 hours of sleep (regardless what time I go to bed!). I put an ice block wrapped in a light material under my legs and I go back to sleep almost straightaway for the great majority of the nights. Generally speaking a cool to limit cold room to sleep is much better for me. I recently suffered a bit more whilst on holiday in Corisca but I realised that it was on days when I had not drunk enough water given the heat conditions.
Thanks. I’m going to try 40mg each day and see how I go on. I too wake up every night, usually after about an hour to an hour and a half hour’s sleep. That’s when my legs will kick off, if I don’t get back to sleep quickly.
Definitely need a cool room and loose clothing, nothing enclosing my legs IYKWIM.
At least things seem to have settled down since the hell I went through when withdrawing from Tramadol and Pregabalin earlier this year, although I’m still left with RLS in my left arm, which I’d never had before.
Such fun!
I have an interest in what you say about not drinking enough in Corsica. I have found that my hydration levels are very important to reduce symptoms and improve sleep, (assuming I don't overdo things and have to get up in the night to pee!) but scrolling through pages of research have been told that as RLS is a neurological disease and hydration shouldn't have an effect? How many others have issues with hydration? (I have stopped tea coffee and alcohol and only drink water to combat this).
I would say that dehydration would have an impact on getting leg cramps, making it worse than usual.
Hi ! A couple of years ago, my neurologist thought I could benefit from iron treatment. I went to the hospital and was hooked up to an IV and for an hour was infused with a deep red solution of iron. Unfortunately for me this did not help. Taking supplements is unlikely to help you. Iron is a tricky beast to absorb. But you still may want to try it at least so you can say you “left no stone unturned”
Sorry to hear it. For me 150mg of tramadol works 90-95% of the time. I strictly avoid alcohol and try to avoid Monosodium Glutamate at all costs. Many restaurants in the US add it to make their foods delicious .. but it profoundly causes RLS.
I’m glad you’ve found starting that helps, but be careful with Tramadol. I was taking it for a few years, originally prescribed for sciatica. It’s left me with far worse RLS than I had before taking it, and the damage is permanent. Before taking Tramadol I only suffered it in my legs for a few days a month. Once I started weaning off it, and for the last two and a half years since stopping it, I now get it in my left arm, neck and the base of my back as well as my legs, pretty much every night. I also suffered from really bad insomnia too. I gave up eventually and went back on Pregabalin. It helps but it’s not doing a lot, though instead of insomnia I’m just tired all the time.
In my case the damage was caused by the Ropinirole and Pramipexole. I had RLS on an almost daily basis before being placed on those drugs and it was exclusively in my legs. However after 2 years on those, I started getting it in my back and arms and it became painful. So I can’t blame the tramadol. As much as I’d love not being on it, I think its superior to everything else I tried including pregabalin 300mg which caused me excessive sleepiness in the morning and 20+lb weight gain. Nonetheless, like yourself I am also constantly tired during the day, because the tramadol only got rid of the restlessness not the sleeplessness. I nap for less than 15m during the day and usually get relief.
Thanks for sharing your experiences .. helpful to know others are dealing with this and not just my problem !
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