The life with RLS

[tompedreno]

Hello all, I just found this community and I'm so happy to find a place where I can share my thoughts and pains through...

So I've had RLS since I was a teen, but never took a deep research or interest into it, as no one else was noticing and it was more than 20 years ago.

The cramps were there, the urge to move the legs... but you know, living as a teenager it was not something that really mattered to me.

I always got up tired after a night of "sleep" and lived with that I guess.

Some years ago, my wife mentioned that I moved the legs a lot when sleeping, so started investigating and found out it was actually RLS what I had.

I went twice to sleep clinics in Spain and through some sleeping studies I started taking Pramipexole some years ago (Mirapexin actually).

The problem that I see with that med is double: one is that I don't want to be on meds all my life due to its secondary effects (I'm 37 now) and second, as soon as I don't take the med, the RLS hits me as crazy and affects my legs and arms and I can't sleep.

My iron levels have always been low since I was a kid, and I guess I'll be starting with some iron bisglycinate from Solgar now to escape from meds (it's chelated and shouldn't need Vit C) and also with some Horse Chestnut for relaxation.

It is annoying and frustrating to live with this and I want to find something natural that helps me retire the Mirapexin and also that lets me live a normal life without the crazy kicks.

Thanks for your comments!

[involuntarydancer]

Hi tomp and welcome. I took mirapexin for many years. It enabled me to live an almost normal life but, like you describe, the legs went mad if I missed a dose. Eventually I experienced augmentation and had to come off mirapexin. Coming off mirapexin is very difficult - the legs (arms, whole body) go absolutely mad for a few weeks and sleep is almost impossible - the only effective medication is a strong opioid which my sleep consultant refused to prescribe.

Once off mirapexin, some discover that their symptoms recede to a point where they can control them with lifestyle (mostly dietary) changes. If your symptoms remain severe however it can be difficult to find a regime (even one that includes prescription drugs) that effectively controls RLS.

Raising iron levels (if your serum ferritin is low) is probably the single most effective change you can make (though there is a small group for whom raising iron levels makes no difference) . It made a huge improvement to my RLS though I still need drugs to treat it.

Low fodmap diet, low oxalyc acid diet, low chem diet, low sulfur diet etc etc. all have very enthusiastic supporters.

It is great to be mirapexin free and I now realise that it was having all sorts of negative effects on my life - most significantly a form of compulsive behaviour which I had not realised was drug induced - but it has been hard finding an effective regime which enables a normal life.

Keep us posted with how you progress.

[tompedreno in reply to involuntarydancer]

Thanks very much involuntarydancer .

Truth is that I could live with the RLS before starting with the drugs, suffering some days more than others, feeling that urge to move the legs in some evenings, but the symptoms are way worst with the pills now as how they used to be. In case I am late to take them of course.

Currently I'm just taking 0.18 mg, and my idea is to start taking half a pill from today on and as soon as I get the horse chestnut and the iron to get rid of the drugs in my body.

I guess it will be tough but I'd rather spend some days with that pain of no-sleep than living in this rollercoaster that mirapexin brings.

I'll keep you posted.

[beady3]

Well don't we all want to live without legs kicking and the walking about by the hour,please if you find something let us all know thanks

[tompedreno in reply to beady3]

Of course I will, thanks beady3 .

This is something people can't imagine if they don't leave it, and to me, having lived with it for more than 25 years, I guess it's time to find something natural to let me escape from the forever-drug treatment.

It's also funny how people would recommend melatonin but for us that would be worsening... so I guess it will be for me Magnesium chelate before going to bed, vitamin B complex in the mornings, and then iron and horse chestnut in the evenings, combined with some grapeseed extract that is meant to improve circulatory problems... let's see if this crazy cocktail brings good results.

I'm feeling positive about it!