RLS during in the morning and during the day when trying to take a nap?

[daisydaisy26]

Dear everyone here, fellow RLS sufferers, I am so grateful for this forum, I am on it daily to see what else can help my mother. First time I was here because she suffered badly from RLS which worsened a lot after hip replacement. And she was on 900 mg Neurontin and 0.0375 mg of Pramipexole that time. The doctor checked her discharge notes and noticed she was anemic at the time of discharge - not so much, but still that definitely made a difference. Apparently she had some blood loss during replacement. She was taking iron for a couple of months, but then stopped it as she was getting diarrhea from it (pretty unusual it seems, probably because she only has half of her colon after colon cancer). But these 2 months of iron seemed to have helped a lot, there are bad days when she can't handle RLS, and for that she takes a very small dose of Clonazepam that helps. So she is about to have her bloodwork done to check ferriting and the whole iron panel. Plus she started doing some light exercise before sleep that she actually must do after hip replacement, which seems to help. But my question is why does she sometimes experiences RLS like in the very morning? She sleeps well, usually wakes up quite early, 7-8 am, eats her breakfast and wants to sleep again, or rather take a nap. And then RLS comes. It's not a big deal because she doesn't really want to sleep and can do something around the house etc. But that's so weird to me, since RLS is the evening and night problem. I mentioned augmentation to our neurologist, he said it happens like after years and years of Pramipexole, and she's been on it for maybe a year and a half. And her Neurontin dose is 1200 mg. Did anyone have the same problem and what did your doctor explain to you about it? What can and should be done? Thanks a lot!

[SueJohnson]

Unfortunately, augmentation can happen after a short time on a DA and it definitely sounds like that is happening. According to the Mayo Clinic Updated Algorithm on RLS, augmentation occurs at "an annual rate of 8% per year for at least the first 8 years of use." You might want to print out that section in that article to show to her neurologist. It is at Https://mayoclinicproceedings.org/a... So she needs to come off the Pramipexole. To come off it, she needs to reduce by .125 mg every 2 weeks or so. She will have increased symptoms. She may need to reduce more slowly or with a smaller amount. She should wait until the increased symptoms from each reduction has settled before going to the next one. She will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as she nears the end. On her test for ferritin be sure she stops taking any iron supplements 48 hours before the test, fasts after midnight and has her test in the morning. To avoid diarrhea, she should take her iron with a small amount of food. Unfortunately that will interfere with the absorption of iron but if it avoids the diarrhea she will at least be getting some iron although it will take longer to raise her ferritin. Using iron bisglycinate may or may not help with the diarrhea. She could try it and see. To help increase her ferritin, have her take the iron tablets at the same time each day but no sooner than 24 hours apart or that will decrease the iron absorption.

[CYF66]

Hi Daisy, it’s much more common the RLS to happen at night when we want to rest, but it can also happen during the day. My mother can sleep well, but if she seats for long time, her leg starts to jump. I myself have been having horrible nights. I simply cann‘t sleep. I can only fall asleep at 10:00 or 11:00 in the morning. And sometimes, also during the day, when I lie down my legs start involuntarialy to move. That‘s a nightmare, because it consumes all our energy. Regarding the iron, it has more effect when a vitamine C is consumed together. I hope your mom gets better soon. Best wishes. Cynthia

[SueJohnson in reply to CYF66]

Are you taking any medicines for your RLS?

[Eryl]

Does she have the same thing for breakfast very morning? Could that be why she can bear the rls some days but not others?

RLS is mostly connected with high systemic inflammation cused by people's diets and having RLS in the mornings suggests that she is eating a breakfast rich in inflammatory foods like white bread and fruit juice or commercial breakfast cereal.

A diet which causes a high level of blood sugar is connected with the growth of cancer although the initial cause may be something different like emulsifiers in processed foods (ice cream, chocolate or sauces).

[TeddiJ]

I have RLS in the morning when trying to sleep and have also had it in the afternoon when trying to sleep. I assume my circadian rhythm is just off but not sure.