No relief: I've tried several different... - Restless Legs Syn...

Restless Legs Syndrome

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No relief

JimA5810 profile image
10 Replies

I've tried several different meds. Now on neupro doesn't work ethier I'm going to try some iron pills, i've heard that many times. Worth a try. Also i've read many times about exercise and walking what is the best time to walk before bed or earlier in the day?

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JimA5810
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10 Replies

Hi Jim, sorry none of the meds have worked for you. Before you go down the iron pill route, you need to know whether you actually need them. That means asking your doctor for a ferritin level test, for us RLSers it should read 50-70. If below that level then iron pills might help. Taking iron pills when you dont need them can be dangerous. Exercise and walking can be helpful, but never later in the day, that can make your RLS worse.

Jim, if you're desperate, as I was when my RLS was bad, I would not wait for a ferritin test. You can take one iron pill at the RDA, every night for a week and it is not dangerous in the least unless you have one rare disease which you would know about now if you had it. There's iron in my kid's Flinstone's chewables and he's never had his ferritin level checked, nor millions of other children who take them everyday. With that said, I recommend a form of iron called iron bis-glycinate. When my RLS acts up I take one of those iron pills on an empty stomach. I do not take it with any other supplements. Within an hour my RLS is gone for the night. It has never been a cure for me. It is a treatment, no better or worse than any of the dopamine agonists. It works the same way as the dopamine agonist do when you take it before bed or during an attack. Iron taken this way will happen as many or as little people as Mirapex does. If Mirapex helps 8 out of 10 RLS sufferers then iron will help 8 out of 10 sufferers. I am willing to try just about any pill for a week. If it never provides any relief during that week then I give it up and move on. So that's what I would do with the iron, try the RDA of iron every night for a week. If it doesn't work then give it up. I would still have your doctor check your ferritin levels for general health reason.

You know there's a difference between having low ferritin levels and being anemic. I have never heard of anyone with low ferritin levels "curing" their RLS by taking large doses of iron (three times a day seems the usual). RLS sufferers get their stores to the high end of normal without any relief in sight. That's because even though your body stores are high, your brain (which is the organ that needs the iron) can't seem to call it up...so to speak. RLS is often referred to as the anemic brain. Once the iron gets stored it will never be seen or heard from by our brains. But if you take a bio-available form of iron at night on an empty stomach it will enter your bloodstream and your brain can pick it up from the bloodstream. But by the dawn's early light the rest of that iron pill is stored or on it's way to your large intestine. On the other hand, I have heard about people who never had RLS in their lives, underwent surgery, or an accident, or a devastating illness and became "anemic" and got RLS. Iron does seem to be a cure for these people.

Finally, I was able to stop taking the nightly iron when I realized that the melatonin, benedryl and Tagamet that I was taking was the cause of my restless body. It wasn't just in my legs, it was in my arms, my chest, my eyeballs. It was evil incarnate. Sleep was impossible for several days until I read about the iron on the internet. Sweet dreams :).

beady3 profile image
beady3

Hi Jim,sorry none of meds. Have worked for you, I can't see how a walk is going to help your rl ,I used to walk. A good mile about 9.00 at night but when I sat down the legs would start If you have your iron tested you will know if you need any as to many iron tabs are not good for you the doc will do that for you. I would like to know what you have taken ,keep trying

in reply tobeady3

Beady, no wonder your legs would start up, if you were walking at 9-00 at night. That is the worse time to go walking when you have RLS. You need to do walking earlier in the day, not at night.

beady3 profile image
beady3 in reply to

Thanks for reply,the reason I went for walk at that time was my legs were driving me mad,there is a limet to how much work you can do,and all you do is stand up and watch T V ,what would you have done

in reply tobeady3

Ah Beady, you didnt explain that your legs were already driving you mad, so yes walking is what we do at night to help get relief for our RLS when its going nuts, thats why we get called the Nightwalkers.

AnnaVic profile image
AnnaVic

Hi Jim, I am taking small dessert spoon Feroglobin (from Holland & Barrett) with small glass of orange juice about 9pm. Apparently it's best before bedtime and vitamin C helps absorption. I am thankfully having a good spell and the iron supplement may be partly responsible.

in reply toAnnaVic

Congratulations Anna, you made it through the holidays and are now trying alternatives! I am not particularly fond of iron supplements, but I am less fond of RLS and prescription drugs. Even the bio-available form of iron slows my motility down. I always thought iron was constipating because it is a "heavy" metal. Now I think it is because like in our brains, iron also releases dopamine in the gut. Dopamine in the gut will slow down motility. So what I am trying to say is that it never hurts to keep looking for answers. Because of IBS I cannot take iron every night, I have to wait to see if the RLS is going to act up and then take it. For me it works within an hour so it is no big deal. You will have to do what is best for you. Happy trails...

funnyfennel profile image
funnyfennel

Yes agreed that exercise late is not a good idea, but walking before late afternoon seems to help. However a good trick that works for me if its bad in the night is raising on tiptoes and down a few times. (Hang on to a chair or windowsill !) But I do also take meds...

justcrazer profile image
justcrazer

good luck with the iron I tried it ,walking I don't know but u do a lot of it if RLS kicks in

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