Restless Legs Syndrome (RLS) Discussion Board

I haven't had much trouble with RLS since my iron infusions in 2020. But lately I've had a few sleepless nights of with kicking that could possibly be because of harder-than-usual exercise--but I wouldn't have thought it would keep me up all night long. Also, if I'm quite anxious about something, it also seems I have a bad night with my legs, but this isn't very often.

Last week got my GP to order an iron panel with ferritin. He would never order iron infusions with a "normal" ferritin level, but I see my rheumatologist tomorrow who WOULD order iron infusions if I gave him a sufficient reason for it (he actually reads the literature from RLG.org). But I'm not sure these current results would convince him:

Iron: 126
TIBC: 355
% Sat: 36
Ferritin: 275

My ferritin was 50 in 2020. Then probably in 2021 it was 550 or so--but it turned out I was sick and didn't know it yet. Anyway, what do you all think? Not low enough to ask for infusions?

I've been completely out of the loop, not reading any literature on RLS or remembering much of what I used to know about it back in 2020--just enjoying being RLS-free, so I'd appreciate any advice anyone can offer.

Thanks!

Most doctors would want to wait with a ferritin of 275. The exception would possibly be Dr Earley, who now says that every individual has their own "minimum" ferritin level. He would consider it, but only if he had a detailed history of ferritin levels over time as well as your RLS symptoms. I do not know of any literature on that subject, but you might be able to find something using "Google Scholar" and searching on both Dr Earley's name and ferritin or iron infusions.

Thanks for the info. I couldn't really get my rheumatologist to focus on the possibility of iron infusions today (someone told me he has ADHD which I can believe), but at least he's going to see if I can qualify for Benlysta--a newish lupus treatment that is supposed to help fatigue. Since lupus fatigue is a daily occurrence and RLS only happens infrequently, I'll see how that goes before pursuing iron again.

I did print out a document from Mayo Clinic from the RLS.org site on the Management of RLS which my rheumatologist was happy to accept.

Appreciate the help, Steve!

Celine