Does anyone ever stop suffering from ... - Restless Legs Syn...

Restless Legs Syndrome

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Does anyone ever stop suffering from this affliction? I have had for 3 years now and have good and bad episodes. I take 2mg ropinirole.

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10 Replies

hi Millidog, sorry the answers no, it generally gets worse as you get older, not nice to tell you , but the best way to deal with it, is to accept that its not going to get better, and learn how to cope with it, and get your meds sorted out, thats if you are allready on meds, if your not, i think you should be talking to your doctor about it , sorry again but you will learn to cope.

jean

Kaarina profile image
KaarinaAdministrator

It is good to hear that you have had good as well as bad episodes. Many on the forum hardly get any respite if ever and my heart goes out to them. I like you have what I suppose could be classed as flares of RLS for me or another way of putting it perhaps is that it goes into remission for long periods of time. As I have got older flare ups have lessened for me so I am one of the lucky ones and so grateful, to say the least. I have never taken any medication for it although I was prescribed a med a good time ago. I had a clear out of meds from the cupboard at the weekend that were out of date (took them to the pharmacy to dispose of) and one of the packets was a med for RLS that was unopened. I am 61 years old.That is my story in a nutshell.

Kaarina :)

Kaarina profile image
KaarinaAdministrator

The med I was prescribed but never took was called Cabergoline. I was able to find this out just now from the useful link Darah has given us regarding meds prescribed by doctors for RLS.

Kaarina :)

Darcy profile image
Darcy

I'm afraid I have little more to add, except, don't let it manage you...manage it!

It's your Symptom, accept it, deal with it, and try and stay positive. I know that does not sound helpful, but...C'est la Vie !.

Darcy profile image
Darcy

Of course I have RLS as well!! had it since 1984, and I'm 64 now, and it hasn't got any better, nor that much worse I must say..meant to put this above and forgot.....Senior Moment!!

I wish mine would go into remission, i know some people get breaks of 2-3 years from it. But as this doesnt seem to be happening, i will deal with it and use medication for it and learn to cope with it....unfortunately...and it has become worse for me as i have got older....if i didnt medicate, i would have RLS 24/7.....yuk...

thanks for all your replies. I am grateful for the opportunity to hear from other people who know how it feels. My gp is fairly sympathetic but doesn't know an awful lot about it.

Avosyl profile image
Avosyl

The problelm is GP's are just that, general practice so they dont really know anything about the illness itself. I did a lot of online research, took it to my GP who barely glanced at it before realiseing i wasnt going to give up. He sent me to a consultant who asked to keep hold of my notes as even he had been unaware it could run in families till that time. All you can really do is investigate the ins and outs yourself and on places like here find advice to help you learn to live with it. It makes a big difference to know there are others out there who suffer as you do because for a lot of years i was made to feel it was all in my mind. Dont give up trying to find the solutions that work for you. Good luck

in reply toAvosyl

I'm very grateful to all the comments. This site is new to me and I'm not sure I've really got my head round RSL and all the drugs sound really scary! It is good to read others experiences. Am coping pretty well most of the time but the middle of the night it can be quite lonely. This site a good place to help with that. Thanks :))

nightdancer profile image
nightdancer

The more knowledge you asquire, the less scary ot all is. Everything, even an aspirin has side effects, so you never know. The more knowledge you have, the more power you have over it, and that makes it a lot easer to cope. After leading support groups for 15 yrs, I now just say the same thing Elisse said. No , it s not going away; it is something we will deal with the rest of lives. Acceptance of that fact alone is huge.

Once you wrap your head around that, you are getting a good start. Look on the treatment page on rlshelp.org, and also look for "Drugs and Foods to Avoid". There is not a better RLS web site on the internet, run by a practicing RLS specialist.

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