Hi, I'm fairly new to the forum and have suffered with RLS for 50 years - but it has become a lot worse in the last 5 years. I have read with interest lots of posts regarding different treatments. I'm not at the stage where I want to take a powerful medication permanently so tried the Iron supplements. For 2 weeks I thought it was a 'miracle cure' and wished I'd known about this simple 'cure'. However, on the third week, the RLS started to return and by the 4th week, it had become the same as always so I stopped taking the supplement.
Anyhow, thinking about treatments I remembered that a well known GP in the UK was on TV about 20 years ago saying that LDN was going to be a great help to many different patients because it helped with all kinds of neurological, immune system, etc disorders and also that it was extremely safe to take and cheap to prescribe so, having had several chronic conditions develop in the last 10 years I've been waiting to see what happened with this fantastic drug but all I have ever read was that the NHS would not prescribe it to anyone for any condition. I don't see any change in this recently so would be interested whether anyone, anywhere, has tried it for RLS and whether it has been successful.
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dido241
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I know of 2 people who have used it for RLS and with complete success. Both have left the forum as they are no longer in need of help.
However I suspect it may not be 100% successful for everyone.
Flowergirl used it in micro dose to get off oxycontin and then increased the dose to 4.5mg. She said it completely eliminated her RLS.
I want to try it but need to work up the courage to reduce my oxycontin. I’m pretty sure I’ll have to go through a bad RLS stage before the LDN kicks in, if at all.
Magnesium chelate or oil worked for me marvelously for 6 years (and during light periods of rls homeopathic mag did the trick), but rls now keeps worsening despite large doses of both tablets and >5 applications of oil in the evening.
A friend who also has MS with a bottle of LDN she no longer takes (she doesn't have rls, it was for another use) offered it to me.
I've also ordered some methylene blue that I've recently found out about.
I think I’ve tried everything at one point or another. LDN did not work for me as an option to help withdraw from pramipexole- it might be something that helps once we are free from the pramipexole but it has been useless so far.
I tried LDN last year for 3 months, while still continuing Oxycontin 10mg. During this time I tried repeatedly to reduce the Oxycontin, but didn't succeed as it increased my symptoms again, which didn't settle.
Thus, LDN was unsuccessful for me. My RLS is severe and daily.
Hi, when you say it takes months to clear side effects, what are the side effects you experienced? Also, are you located in the UK: if so, how did you manage to get it prescribed?
Curious about the iron supplements working then not. Have you had lab tests or iron and ferritin, etc? I am always amazed with the incidence of RLS due to pregnancy and the apparent growth demands of the fetus depleting iron then the disappearance of RLS after delivery of the baby. And of course it doesn't effect all pregnancies.
There are quite a few other posts about LDN - you can search all the posts in this RLS forum. I do remember one from a couple of years ago with a lot of information.
I tried ldn for a few months. It did not have any impact on my rls. It is difficult to experiment with as it is preferable not to take it with an opioid. Also, as I understand it, getting the dose right can be important. However, I tried it on varying doses and it didn’t really touch my rls symptoms which was disappointing.
As Jools says, there are a few people who reported complete success.
It can be taken together, but not at the same time of day. And I still took oxy because it works very well for my RLS symptoms. However, it doesn't cure my RLS, I still have symptoms if I don't take it. I switched to kratom a week ago.
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