Restless Legs Syndrome (RLS) Discussion Board

I wish I knew the answer to that. I really think the high stress in my life weakened something that kicked the RLS into severe, 9 years ago. But what is that something called? My RLS savvy doctor (William Ondo) said there is no way of knowing. The one thing I did accomplish in the past 9 years is dramatically reduce the stress and I'm so grateful for that. Back then, I naively thought that if I could significantly reduce what started it (or maybe pre started it-the PTSD or stress) I would considerably reduce the RLS symptoms. Wrong..... What I try to do now is rest in the not knowing. Not always easy to do.

To rest in the not knowing can be incredibly difficult. Does it mean that we are willingly relinquishing control or just that we are going with the flow. Going with the flow sounds much more achievable.

Great that you can get there at all! And, I agree - not at all easy to do at time. In fact, that is one of the hardest things, to me. I like knowing. A LOT! The more I meditate and do meditative things, the better I am. But, when I am in a tizzy and cannot get to the place where I can do those things? Boy, am I in trouble.

Betty,

Definitely going with the flow. I guess I can't give up hope entirely that I won't be able to at least manage the RLS a little better.

Ann,

I am very grateful for my meditation practice now.

If the problem is not iron what else could be a root cause? My iron was 59.6 I take iron supplements twice a day just got it checked. I go to a sleep disorder center and the doctor put me on horizant but it made my symptoms worse. Just wondering what else could be causing this horrific RLS :( sometimes I feel like breaking my toes would make this feeling go away better which is so horrible. I hate this so much. I am so glad I have started going to someone who knows things about RLS he is familiar with the RLS foundation which is really good!

The "root cause" of RLS is low iron in a specific part of the brain. It is entirely possible to have great, or even high, iron levels in the blood but still have low brain iron. They are still doing research, but for some of us (including me), the issue appears to be a difficulty in getting the iron across the blood-brain barrier from the blood and into the part of the brain where we need it. My ferritin recently came down from over 600 to about 225 and yet my RLS has been very severe during that entire time. So, for those of us for whom iron supplements and iron infusions are not the answer, all that we can do is continue with our meds, try to identify and limit our triggers and hope that research breakthroughs do no take too long.

When you say your iron was 59.6, is that serum iron, or serum ferritin?

The doctor said he wanted to get my Ferritin tested so I’m sure it’s the second one

@Rebeccalee:
That concentration of ferritin in the blood (59.6) is low for an RLS/WED patient. Specialists have been suggesting at least 100 ng/ml for some time now. In the link with my signature, there are documents that discuss this:
- the 2018 IRLSSG paper on iron treatment notes that IV iron is a safe & effective treatment for moderate to severe WED/RLS in people whose ferritin is up to 300 ng/ml. Their clinical consensus is more cautious, recommending an initial IV iron treatment only if ferritin is <100 and transferrin saturation <45%, though a second infusion can be given with ferritin up to 300 if there was a positive response to the first one.
- the excerpt from the Johns Hopkins website AND the "little blue book" suggest patients keep their ferritin above 100 ng/ml
- two older papers, the 2012 IRLSSG Summary and Dr. Buchfuhrer's 2012 paper, recommend that the patient's ferritin be at least 75 ng/ml.

Yours is low by any of these guides. Pretty much every specialist would agree (unless your other iron numbers are weird) that you need iron supplementation, either oral or IV. Your low ferritin suggests you would be a candidate for IV iron.

If you want to learn more about this disease and have something to show your doctor, there are two great options:
- a wonderful little book "Clinical Management of Restless Legs Syndrome, 2nd edition" (more info in my signature link). A lot of us have our own copies, and some of us have even bought copies for our doctors.
- the Foundation's brochure for healthcare providers, also described in my link, #3 under "The RLS Foundation's handouts on Augmentation"

The root cause of my RLS happened with a nerve injury injection into groin area.