I'm a new girl and now worried

I have been a RLS since I was thirteen and am now in my seventies. RLS has been a curse as it has prevented me from enjoying theatre, concerts etc. My GP has put me on Mirapexin which has really helped me. Having just joined this site I am astonished to read that it is a horror drug. What exactly is the problem with it. My RSL is very severe so I have found it to be a great help.

[Madlegs1]

Mirapex has a bad name because after a time it fails to relieve rls and coming off it can be quite difficult- especially as many drs up the dose instead of taking people off it immediately.

Some people get 10 yrs others a few months.

The main thing is that when it does stop being effective do not increase the dose- get off it and find a new non Dopmine Agonist drug.

Hopefully you will be a 10 yr patient. Enjoy your holiday.

[Hidden in reply to Madlegs1]

Thank for that explanation- it is very good advice

[Twitcher in reply to Hidden]

Hi Noddedoffagain, Welcome - I am the same as you - had it since teens, now in my late 60's getting steadily worse, long haul flights (standing for 11 hours) now out of the Q. Every evening I'm driven to bed with it, interrupts my sleep and quite often get it in my arms or that 'all over feeling'. I feel a bit guilty because my 'bad' is not half as bad as some poor peeps on here so I try to be positive. Being a nurse I too like to explore all options and definitely had success with the magnowrap magentic bands and taking magnesium supplents - both work well to a degree. Not had any prescribed medication yet, always looking for alternatives to chemicals. Then I saw this articla and I wondered if anyone else here has seen it? migrainecenters.com/migrain...

prweb.com/releases/2017/08/...

migrainestop.com/

Apparently the positive affect on RLS was an 'accidental discovery' - the science makes sense to me so I've ordered some and I'm going to be trying it - watch this space!!!

Twitcher

[Hidden]

The problems arise when the doctor's keep increasing the dosage as Madlegs has said. The highest dose for Mirapexin is now recommended as two pills of 0.088mgs. and no higher. If the two pill at that lowest dose does not work then its recommended to change to another type of med. Also as Madlegs has said you might get a good run taking Mirapexin. Some people do and some do not.

[Hidden]

Thank you Elisse - I'm on the two tablets a day at present so again thanks for the good advice

[Graham3196]

If you are new then you probably haven't heard that many lucky people can escape their RLS by a change of diet. I am your age and I have had RLS for more than 50 years. It became really severe about 15 years ago. A couple of years ago I went to a gluten free diet and felt some improvement. I then tried a diet called FODMAP from Monash University, Melbourne Australia and finally a low chemical diet from Prince Alfred Hospital in Sydney Australia. If you search this forum you will find many references to these diets. Some people are fixed by the FODMAP and others by the Low Chem diet. In my case the fodmap diet made me much better and the low chem diet practically removed my symptoms. You start with a strict exclusion diet and then introduce food in a systematic manner so you can determine what foods adversely affect your body. Some people have tried the diets with no effect so its only for some lucky ones. If you avoid these foods and you're right. I hope it brings you some relief.

Graham

[Hidden]

Anything is worth a try so thank you for that - I will look it up

[Graham3196 in reply to Hidden]

Hi I would like to hear if you have decided to try the FODMAP diet?

[Hidden]

Hello Graham3196

At the moment I have been logging foods that may trigger my RLS . I already knew that alcohol was bad but I have now added chips to my list. I see a neurologist in Sept so I would like to go armed with intelligent questions & possibly answered too. I am now eating a banana before bed which was suggested. I would like to get off the Ropinipole which I have only been using for two months after the doctor suggested that I double my intake of Mirapexin. I will post again after I see the neurologist although I am not too hopeful that I will get any more advice than I do from this amazing site. I instinctively knew that doubling my use of Mirapexin was foolish but I did not know about augmentation.