RLS... at an early age now that I loo... - Restless Legs Syn...

Restless Legs Syndrome
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RLS... at an early age now that I look back at symptoms.

FluteE
FluteE
12 Replies

I’ve seen posts about what has possibly caused rls. I believe I’ve had it as far back as I can remember... just not to the point of excessive pain that I cannot tolerate with the aid of something. I do not think it was caused by a medicine as I rarely had to take anything as a child and young adult. I do feel that my diet has a lot to do with my symptoms being exasperated. I’m starting to find some of my food triggers that make it worse. All of my levels (magnesium, ferritin, etc) were good except for vD3, but I do take magnesium, iron, B6, and B12 just to keep them in range. Of course, been on Pramipexole .125 and just recently moved up to .25. Still wake up during the night... been up since 3:00 am, not hurting but just wide awake. I also notice tingling and twitching in my legs although not painful. Hmmmm?

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raffs

Yeah there are a few of us on here that have had it as long as they can remember and definitely diet is an issue.

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Graham3196

What is your actual ferritin level?

The latest idea is that it should be over 300 so you should target about 350.

Good Luck

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FluteE
FluteE
in reply to Graham3196

132... I’m working on that now.

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Graham3196
Graham3196
in reply to FluteE

Some of the experts (eg Doctor Buchfuhrer in the USA ) say that its practically impossible to raise your ferritin level to 300 with oral supplements. They say you need an iron infusion. Speak to your GP Doctor Buchfuhrer says that this is now their first line of attack. In some places this is not easy so you might have to shop around doctors or go to a sleep clinic for help.

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Graham3196
Graham3196
in reply to FluteE

Did you get my private Message containing a list of things that are known to help?

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FluteE
FluteE
in reply to Graham3196

Yes and thank you. I’m currently looking over that closely. I don’t go back to the dr until November. At that time, I will ask her about iron infusions.

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Pam34

Care in increasing your pramipexole - read up on augmentation so you are aware of what to look for.

Pam

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FluteE
FluteE
in reply to Pam34

Thanks Pam! I’m trying to keep my Pramipexole at.125mg just 1 x daily. That’s the lowest dose. I’m working on increasing the iron and eating better.

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Cork

Very similar to you, but I've never taken medication - besides painkillers to help dull the pain at night. However, I found that taking vitamin supplements or probiotics actually made my RLS way worse, both tingling and pain-wise on different nights. For the past 6 months I'm eating a healthy diet and keeping my iron levels up, and the RLS has improved massively. It still gets bad at times but I reckon there's something I'm eating that is causing the RLS, because I can go 4-5 nights without any symptoms at all now since I stopped the supplements.

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FluteE
FluteE
in reply to Cork

My iron level is 132. I’m going to work on increasing that. Interesting you say that supplements can make RLS worse. I’m going to try lay off those and see what happens. Ready to see light at the end of this tunnel!

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Lots on here find a form of restricted diet helpful. Veganism, low oxcalic, dairy free, fodmap. There are many recommendations and it is a question of experimentation.

Could I second what Pam says about pramipexole and urge extreme caution about increasing your pramipexole dose. Keeping to the lowest dose and using a different family of meds for breakthrough symptoms could save you much suffering later. You could try adding in gabapentin/pregabalin or a mild opioid instead of increasing the pramipexole. Look through some of the posts on pramipexole and/or augmentation and you will get a feel for how bad things can get if you keep increasing the drug. It does bring relief but at a fearful price ultimately.

It is worth having your serum ferritin checked as raising iron can be very beneficial for some and also can help delay and possibly prevent the onset of augmentation.

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FluteE

My iron is 132... so I’m going to increase that. Thanks for all the info. I’m feeling more equipped to fight this battle!

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