Im going NUTS!

[Quinnicus]

Seriously wanting to cut my leg off! Argh. Ok my story seeing as I cant sleep and found this forum.

In my teens i sporatically suffered with RLS on and off a couple of days here and there and thought nothing of it. But when I got to the age of 26, it came back amd to this day never went away. I guess at the time, I was under incredible stress - but thats another story...

Anyway, im now 36 and have been taking ropinerole for the past 10 years. I started on 0.5mg (I think) but was upped to 1mg after about a month. I stayed on 1mg for approx 3 years of which i then requested it upped to 2mg. Again after about 3 years, the relief was deminishing and so got it upped to 3mg of which im on at the moment.

However I am now at that 'augmentation' stage again of where its not having the same relief effect. Im contemplating requesting the docs up it to 4mg. My worry is what then? What happens in time when i really need it upped again? Will the docs keep doing so, even after the 'recommended' maximum dosage - even though ive read that studdies have found 6mg and 8mg to be fine.

So now im typing this on my tablet standing up and getting no sleep.

I guess i could cut my head off instead seeing as its a neurological issue

As my title says 'Im going NUTS' because my RLS is not just uncomfortable, but bloody painful too.

Anyway thanks for reading my rant

Edit: For me RLS is even more worse with increased physical activity (i.e. exercise) during the day. Has anyone noticed this or can confirm?

[Madlegs1]

Don't bother upping the dose - it will make matters much worse- only limited extra control and much harder to wean off.

Read the articles on Augmentation on rlshelp.org and rlsuk. Also search Augmentation on this site (magnifying glass on top right).

You will get a lot of info from these. The main thing is to get off the dopamine agonists and onto other meds.

Print out the various leaflets and bring them to Doctor if necessary.

Goodluck. You will get this fixed - it's just a question of getting the right set up for you personally.

[Hidden in reply to Madlegs1]

Good info Madlegs. Hope the poster listens to what you have said.

[beady3]

Well quinnicus as you can see I am up no sleep yet 3.45 and legs very painful you could go mad couldn't you ,all I can say is don't keep upping your meds like they say 2small doses of something is better than 1 big does ,I am on the patch and tonight not doing very well ,don't you dread tomorrow as your so tiered I do,good luck to you x

[Johnnycomelately]

My RLS is also worse after exercise, long walks etc😬

[graciebes]

hi sorry to hear about your sufferng.Ive had RSL for nearly 30years,although after itake my pramapexol abiut 5.30-6pm i dont usually have any problem it keeping me awake atnight ,its just that i cant sleep.But recently i have been having RSL in the afternoon also.I am now thinking of taking half at lunch and half at night.Will keep you informed of the result .

[LoisTonya]

I find that short walks alternately with sitting ( on a different chair each time) is best for me. Certainly, sitting for too long or walking too far make it worse.

I live in sheltered housing and in the evenings ( when rls is at its worst) I walk down 3 flights of stairs to play board games. When I've had my go I walk around the room until its my turn again. When I return to my flat I take my Ropinerole ( it takes more than an hour to ease the rls) and stand to do the day's washing up and wander around doing odd jobs until my legs have eased enough to go to bed. This seems to work for me.

[Duckish]

Have you ever heard that Magnesium decency is the cause of RLS? It's true!! It's that easy! Seriously I have suffered with RLS for years, I found an article on Facebook that mentioned this in it. I started taking the magnesium and it worked!! No more restless nights rolling around in bed with terrible pain! I took 1 capsule of Magnesium suppliment about an hour before bed, that's it! Everyone is different, it may take a couple of nights but don't give up! It takes a few doses to get it built up after it being so depleted for so long.

Here is an article to help: healthline.com/health/restl...

[Pippins2 in reply to Duckish]

Duckish, unfortunately it is not that easy! ! Although I am pleased that the Magnesium supplement works for you it certainly does not help everyone. It didn't work for me. .Pippins2 x

[ll13-LINDY]

ok whoever said cut off their leg is only 'half' right lol I'm at my wits end also. I don't think I can take much more. I turned 65 10 days ago and that means I have wage war on RLS for over 50 years. My dad had this and I read somewhere that they thought it was heredity. I have tried everything or so it seems. I don't remember when I had a good nights sleep. 3-4 hours is the best. Idoubt if that happens tonight. This is a great website. Lindy

[Suckerbeagle]

The only thing I can suggest is that you pull out all the stops to find a doctor who specializes in RLS. This is usually a neurologist, but beware—all neurologists don't understand RLS or how to treat it. You may have to travel some distance to find the right doctor but it is essential. Once you've found that specialist you might be able to find a doctor closer to home to prescribe your meds. Sounds like it's possible that you've gone as far as you can with the Ropinerole. By continuing to increase the dosage could cause further augmentation. There are medications. But—what works for one person may not be right for another. You want a medical person who will work with you to find the right meds and the right dosages. You want a doctor who doesn't believe that you have to suffer though this misery.

Whatever you do, do not allow yourself to feel trapped where you are now. I know how it is. I was there about 10 years ago before I found my neurologist in Boston. When I moved to New Mexico for a couple of years I had a neurologist who only understood sleep apnea. Finally I took action and found myself the best RLS Doctor in NM. It was well worth an hours drive to Santa Fé. Now I'm living in Portland, ME where there's a RLS support group.

Of the fifty or so people on the group list no one believes they have a doctor who understands this disease. So, I continue to travel the two hours to Boston to see my original RLS doctor. It's worth it because this disease can ruin your life, make every day intolerable.

I hope to hear from you that you've been able to get the right treatment.

Best of luck

Jeanne

Ps it's really great if you have a friend or family member who can be of support. This can be a very lonely experience without someone who believes in you and will help. But, RLS symptoms can be successfully treated nowadays. It is not unreasonable to have hope for a treatment plan that works for you. I don't know what country's you're in, but the American Restless Legs Syndrome Foundation (rls.org) has all the info on medications, holistic treatments, webinars and more. You are not alone.

[Quinnicus]

Hello all

I would like to say a big thank you for your wise words of support and just being supportive. It is most appreciated.

Im in the UK, and you cant really shop around for doctors/gp. However it might be time to push them to see a specialist for this. But before i do, ill read up on what other treaments are available, asi do understand augmentation.

Most appreciated of your support.

Cheers

[nightdancer]

Again, am glad that works for YOU, but it certainly is not the "drill" for everyone. As we say over and over, there is no one thing that works for everyone, but thank you so much for continually sharing YOUR story with us.

[nightdancer]

You are on the trail towards augmentation, and if you keep upping the dose, it is just going to get worse again. The recommended therapeutic dose for Requip is now 2 mgs per 24 hrs. IF you keep going up in the dose, it will become an even more vicious cycle, and you are getting too high in your dosing now, as per the experts who set these for RLS. It is really time for you to explore other classes of medications, because you have reached your limit in your dose. This is very common in dopamine drugs, and do read what madlegs said. Your RLS can ramp up at any age, no matter what anyone else says, but also would like to know if anything has changed, are you on any new meds for anything, over the counter or prescription? There are many meds that can and will make RLS worse, and several that can help. But, it seems your time is up with the Requip. Studies that say 6 or 8 mgs are old ones, and be careful where you read up on these things, and always note the date of the info you are reading.