Restless Legs Syndrome (RLS) Discussion Board

peanut1 wrote:Fascinating that we dump iron more than most and I'm curious why. Would love to see a study on that one. I was anemic most of my life and only had mild RLS. I always wonder what kicked it into severe when I was only getting 1.5 hours a night.

What is more weird is that many of us with low ferritin have normal hemoglobin. They used to LOVE to see me when I would donate blood - for a woman, my hemoglobin was always toward the high end. Then I had my ferritin tested and it was 8. Go figure. Most doctors cannot even grasp this idea that we dump ferritin yet we are not bleeding anywhere. I am not aware of any hypotheses about how our bodies can do this - if someone else knows of any, would love to hear.

It really is quite perplexing to have all of these disparate components - no wonder they are still unraveling this. There are only a handful of researchers and so many parts to study. And, while upwards of ten percent of people might have this, only a small subgroup of that ten percent have it severely. We are doing a LOT better in terms of awareness; the Quality Care Centers, I hope, will be a big part of helping doctors be aware and getting more into the research side. I have always been a bit bummed that the sleep associations focus so little on it.

Ann,

Me too, it gets downright depressing with the slow progress on this! Part of me is still in fantasy, thinking there is something out there that can help me lick this, that is just within my reach. Other days, I accept it better like this is an adjustment that I need to get used to. While I can't say my RLS has gotten any better since it kicked into severe mode, I can say that I've learned to manage it much better. Some weeks are extremely trying such as the past 2 weeks, particularly if there is a change in sleep schedule, or I get off the diet or if I accidentally run out of meds or iron

While I can't say my RLS has gotten any better since it kicked into severe mode, I can say that I've learned to manage it much better.

Same here. I think acceptance - such a nebulous thing! I can barely understand it - but I think acceptance was important for me. It took about 7 years for me to accept that this was happening to me.

Oh, acceptance....what a crazy concept, lol. I find that my acceptance is the proverbial onion. I think I have it down, only to find something else I haven't yet accepted and need to work on.