← Return to Restless Legs - Updated Algorithm vs. AASM Guidelines for Iron

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I have started on the same journey as you. I've had RLS for a little over 15 years. Sometimes I have attacks while sitting at my desk and my leg jerk so severely that I broke the lap drawer. I've even hurt my foot from jerking so hard. I get bouts while driving long distances and need to pull off the road. Have you had the sensation go to your arms? I agree that most people, doctors included, don't understand how debilitating severe RLS can be. Most people think it’s just a nuisance and that it goes away after a short period. I don’t know about you, but I ‘ve have bouts last for hours. They hit you at all times of the day and night. You get so frustrated and angry because you are so helpless and tired. Always tired. Day after day. Sleepless night after sleepless night. I got so tired that I once nodded off while eating a candy bar sitting in front of my computer trying to do some work. TWICE. Dropped the candy bar on the desk, then the ground. I get to where I dread going to bed because I know as soon as I do, I’ll have another bout of RL. Off my soapbox…
As you mentioned, I too have been experiencing augmentation. I have used the patch for years, thinking it was my magic treatment until augmentation. They have supplemented my patch with various medicines and dosages to help with the RLS but also to help me sleep at night, but they only help once my legs settle down to a point I can try to go to bed. Sometimes that is 1 or 2 in the morning, and I get up at 5 to go to work.
I haven't come across the study you mention. I, too, have had my iron checked. About a month ago was the last blood test which came back within guidelines. I am going to do my research and bring the algorithm to my doctor's attention. I will be interested to see how he reacts. He has always appeared to be willing to try whatever will help. I’ll post what happens. My doctor is trying to get me into a specialist to try and get another assessment.

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Replies to "I have started on the same journey as you. I've had RLS for a little over..."

I take a pramipexole tablet, 0.5mg (prescription), and
sometimes a couple of Tylenols at bedtime. No cure, but
it does help me get a good night's sleep.
You are correct, most people do NOT understand how
debilitating RLS can be. I have had this problem
for about 30 years.

I too have the RLS travel to my arms and torso during a severe attack. I use pramipexol 0.026 mg retard and mostly respond ok to it. Sometimes on long rides I take a lighter dosage one.
Just recently started at a clinic specializing in RLS and found out about ferritin. It was very low and now I'm on a high dosis of iron pills. 3 a day. Haven't tested my blood yet to see if it works. My doctor told me to do strenuous exercise in the afternoon
( get my heartbeat up and sweat) and activate my brain at night. Like learning a new language etc. Not easy to do! But its a new approach apparently. Anybody else heard of this?