Restless Legs Syndrome (RLS) Discussion Board

Hi everyone!

I was so happy to see an introductory post about me--thank you moderators!

I want to ask about iron, but first a funny story: I have been a sleeping thrasher as long as I can remember. When I was
a child, we would go camping in an RV. At night, my
Dad would bark out to the person moving around (me) "Quit moving around!!!!"

I'll never forget the excruciating feeling of being unable to move... at least until he started to snore. Then I could move around ever so slowly.

Fast forward to the first time I heard about restless leg syndrome. I thought it sounded horrible and the idea of it bothered me. Of COURSE it bothered me. I didn't know I had it, and I was already suffering! I wad imagining suffering even worse than what I had!

Some posts mention Iron as a solution. My iron levels have always been good. Any recommended types/dosages?

We wish you didn't need to be here, but are glad we can support and help you.

My story is similar - since I was a toddler, no one would sleep with me. I woke up upside down, covers all over the place, etc. That, I believe, is the periodic limb movement. I often feel that the PLMs and the RLS are simply two sides of the same coin. I can sometimes have PLMs when awake, too.

At any rate. check out the Non-prescription Medicines, Supplements, Diet forum on the board. There are many posts about iron. When we talk about iron, we are generally referring to serum ferritin, rather than hemoglobin (though if you have low hemoglobin, that is an issue, too, but many of us are fine there). Essentially, you want your serum ferritin much higher than was is said is the lower limit (between 10-25, depending on the test provider). Many of us have serum ferritin in the teens or 20s when we are first tested. They experts say that we should try to get it over 100 using standard oral iron if we have it between, say, 40 and 90. When it's lower (mine was 8, IIRC, when first tested), then some will consider an iron infusion.

Hi esmith428 and welcome

All that Ann said is true. Except the iron posts tend to be all over, e.g. since infusions are by prescription they can be in the Prescription forum. And posts like this one are all over. You can search for "iron" in the search bar (but be prepared for LOTS of results).

Iron was recognized long ago as important for relieving symptoms of WED/RLS but only recently was it given front-line status. It should be the first thing you and your doctor try. When you say your iron levels have always been good, you might still have a deficiency. The measures used to test for "iron deficiency" were developed to test for deficiency in the red blood cells and their bone-marrow precursors, and that is done with blood tests. But the iron status of each organ is not the same, because the processes that regulate iron uptake into an organ are specific for each organ; so it is quite possible to have plenty of iron in your blood but be deficient in your liver or brain. There is evidence that WED/RLS patients have brain iron deficiencies.

The first step I would recommend is getting that iron panel done. When you get a blood test for iron, you should get tested after an overnight fast (12 hr), preferably with no red meat in the last meal before the fast. If you already take iron supplements (even a multi-vitamin with iron), they recommend stopping those for the 2 days before the test. Ferritin is not part of the normal iron panel, so your physician will have to ask for it specifically. The parameters of importance to WED/RLS are your serum iron, transferrin saturation, and total iron binding capacity (TIBC). Ask to know the values, not just "normal" "low" "high" etc. Ferritin concentrations of 24, for example, will be called normal by many labs, yet any number below 100 is too low for WED/RLS patients.

If your ferritin is below 100, you might benefit from oral iron supplements or an iron infusion. An infusion might be more effective than oral iron if you're between 75 and 100, because the more iron that's in your blood, the harder it is to absorb more. Oral iron might have the most impact, and be cheaper and easier, if your ferritin is below 75. There is a lot more nuance to the iron thing, most of it is explained for health professionals (and curious laypeople like us) in a 2018 paper on iron treatment of WED/RLS (in my signature link as "The 2018 International RLS Study Group consensus guidelines on IRON TREATMENT for WED/RLS").