Hi everyone,I'm a new poster

Looking back over the years,I realise I had RLS intermittently. Then 4 yrs ago after a fall from a stepladder resulting in severe back pain I had a nerve block procedure, to cut a really traumatic period short, I'm now suffering daily with rls (just in my legs and feet) and am currently taking pramipexole, which helps enough to keep me sane!! (Just about!).... I have 2 patches on my outer thighs that feel bruised, sometimes numb, sometimes fizzy (not quite pins and needles). I don't sleep well, and driving really makes them worse. So, that's me...... I'm hoping to hear some helpful tips on how to cope.

[Welshone]

Hi welcome to the forums like you I've suffered with RL for years I was put on ropinerole a few years ago I was I started to augment rather quickly so started to increase it from one a day to two, four times a day, not good doctor's put me on the pramipexole one at night to g begin with that was fine until I augmented rather quickly as taking it for times a day two at a time, than I started getting rather strange side effects I was buying like I had a bottomless pit for money, I managed to stop that next I started to sell what I could get my hands on to try to recoup some money id spent on things I didn't even like our need, so 12 months ago I decided to come off the pramipexole and do it more naturally up to now Touchwood it's helping, I still get the odd night when my legs are driving me mad,

I take 1 iron tablet first thing

2tablets of magnesium citrate. One after dinner and one at bedtime Any more it does not agree with me

I have a magnesium spray and pumpkin seeds if I need help in between tablets.

Hope you find something to help with your RL they are the pits trying to explain to someone who does not have the complaint what it feels like, it's like trying to put socks on underwater.

[Hidden in reply to Welshone]

Hello Welshone, Thanks for the welcome. It is a strange one eh!! I tried standing in a bath of magnesium salt, night after night, to no avail, and all the blood tests I've had have ruled out an iron deficiency....... I too was prescribed Ropinerole to start with , but the side effects of nausea and dizziness were too much for me, and that's when I started on pramipexole. I have no side effects at all, but it is not completely effective sadly, I can have a reasonably symptom free day and night followed by a poor couple of evenings/nights...... same drug same dose......you're right!! It is the pits!!.... I can't imagine living with this for the rest of my life!!.......

Oh well, as I'm now pacing my living room floor because sitting down is unbearable, I'll say BFN, and resolve to ask my GP to refer me to a neurologist in the hope of getting a miracle cure!!

[PollyH59 in reply to Hidden]

Hello GrannyB68 - At first, pramipexole worked great for me, but then I like some other users on here started with this crazy Internet buying! I bought things just for the sake of buying things, I didn't need or want, I just needed to buy. After talking to my doctor about this, apparently this is a side effect to the drug. He told me one of his patients had a terrible gambling addiction and almost spent his life savings. Crazy I know, but it's true. Then, if the buying addiction was bad enough, I started augmenting! I was way worse then before I started, the only difference was, I had a room full of things I bought on the Internet that I would never use. I decided to ween myself off the Pramipexole slowly and I am now able to drive home from work without falling asleep at the wheel, I am able to stay awake and watch some television in the evening, and I no longer have this crazy Internet addiction to buying anything and everything! Please watch yourself and take notice when things start to change for you. This forum is a great place for information and help.

[Sunflowergirlem in reply to PollyH59]

I'm wondering if my medicine is causing the same side effect. I take carbidopa levodopa. And I shop all the time. For stuff I don't need.

[Itchytwitchy in reply to Hidden]

Hello GrannyB68 - I was exactly the same as you, I feel for you. Me and my doctor fixed my RLS. No 1 is to get off ropinerole or pramipexole - I've been on both - they augment till you are desperate and go to bed at 7.00pm because you need to sleep and you need more and more of them and you're only just on top of the situation and desperate not to run out or forget them. The doc tapered me off them. No 2 - I went on to L-Tyrosine and Magnesium. I'm guessing everyone's RLS is different depending on their assimilation of necessary amino acids and minerals. But this worked for me 1000mg L-Tyrosine (not on prescription - at your local health store) at night, and as much Magnesium as you can stand. An overdose of magnesium gives you diarrhoea but I was taking 1000g of magnesium for 6 months before I got diarrhoea. Now I take a bit less but keep the levels up. I'm not a doctor but my RLS has gone because I was prepared to experiment with the magnesium/l-tyrosine levels till I got it right. I really don't get it any more...ever... and I was at the point of desperate. Honestly talk to your doc and give it a try. I feel like I discovered a miracle cure - I'm normal again. Yay!

[Sunflowergirlem in reply to Hidden]

Hello. I am taking carbidopa for my RLS. As long as I take it around 8pm. It works. If I wait or forget I'm pacing my floors. Also hot baths with Epsom salt helps relieve my jumpy legs. Sometimes I get it during the day. Then I'm going crazy Long drives are torture.

[johnnie18]

I am 64 have had restless legs since 25 due to disc problems,but doctor recently gave me gabapentin which really helped me it was like a miracle,but the same meds don't work on everyone...good luck with this,I know it makes you feel like you are going to go nuts sometimes...

[Hidden]

Thank you for that johnnie18,

That's interesting, and I will definitely mention gabapentin to my GP who, incidentally , is really supportive, in that respect I'm really lucky!!

Today I bought Magnesium tablets ,and I will continue to read all the comments and information you all give, and maybe one day I can feel brave enough to come off the prescribed drugs 🤞.bfn

[Hidden]

Hi Itchytwitchy,

Thanks for your input, I'm going to look up L-Tyrosine right now!! Today I bought Magnesium tablets, however I really don't want diarrhoea !!! So thanks for the warning ⚠️

[PollyH59 in reply to Hidden]

Magnesium worked wonders for me, I take two capsules an hour before bedtime and it works great for me. The only time I experience RLS now is when I am extremely over tired like on a Friday night after a long week at work. But after a good nights sleep I am well again. I am for anything natural over the drugs that mess with your brain chemicals. What works for one may not work for another, but for me, magnesium was the key and at bedtime!

[Chopsies]

Hi yes I take Pramipexole and suffer sometimes from a kind of pins and needles - it's more like athlete's foot.

I have just taken delivery of some Mg and will try and see if, after a good stretch of taking it, I can ween myself off P.

Many stories about overt mad spending and gambling, which incidentally have been reiterated by my consultant who now says he will only prescribe to people with partners who are briefed of the potential of this side effect.

[extremenightwalker]

welcome firstly, RLS affects us all in different ways, i would read the posts, always someone posting tips, advice or just support. stay safe