RLS: i believe,that even doctors out... - Restless Legs Syn...

Restless Legs Syndrome

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RLS

NICTIN1942DANJAS profile image

i believe,that even doctors out there,dont really know about the condition,they just give you the tablets,of which there are many varieties,and let you get on,with it.ask,what actually causes rls,i still dont know after all these years,and you all know,it changes your life, while trying too deal with it. god bless you all.

25 Replies

Hi there. I have been reading posts on this site for years and it is good to know how other people manage with this terrible rls.I read your post and you have put into words exactly the way I feel .we just battle on there is nothing else we can do. there are so many of us.

thanks for sharing your views,i have just been informed,to cut out anything with gluten,i will see if it works for me,they said,they have been free for a year now,well i have tried,every thing else,so what the heck,rebel.

My daughter in law has RLS real bad as did her mother. She has been gluten free for years and still jumps and jerks all knight unless she medicates. Her ancestors were Jewish from Eastern Europe. She married my son whose ancestors were from England and Northern Europe. We are all sufferers from RLS. No diet will help. No over the counter remedy will help. You will either control it or you won't, by using Opiates or dopamine agonists. Sorry, but I have observed 3 generations in my own family and two in my daughter-in-law's and it is inherited and really sucks.

Windwaker

Matfeb profile image
Matfeb in reply to Windwalker

Yes, agree totally... I've tried every self-help remedy under the sun, and nothing has worked. The only med that works is gabapentin. It's like magic. I'm so grateful for gabapentin.

evenelson profile image
evenelson in reply to evenelson

It is reading other peoples rls problems and solutions that makes you realize you are not on your own because if you have not eperienced rls you have no idea what it is like and you are right there are so many of us. I was called to do jury service a year or so ago an was excused because of the rls. A friend of mine could not believe as she put it, I had escaped jury service just because of twitchy legs. She has n idea what its like and it so angers me.

in reply to evenelson

Yes, it’s ever so maddening, isn’t it?

How the heck were you able to get excused because of the RLS?? That’s interesting....

evenelson profile image
evenelson in reply to

it would be very disruptive during a trial if somenone was kicking and walking about all the time.

in reply to evenelson

you know, I thought that same thing after I sent the reply. Makes a lot of sense.

Hope you're doing okay. Where in the States are you from? I'm from Texas, but my husband's job got us transferred to Oslo, Norway 5.5 years ago.

evenelson profile image
evenelson in reply to

I am actually from a little place called Biddulph in Staffordshire. England.

I would say that is true for a very wide variety of problems.

I had a bad viral infection that left me bed bound - Dr's couldn't work out what was wrong, same with RLS same with ME and the list goes on.

Just because Dr's know a bit does not make them experts. The best information I have gotten on RLS, (and other conditions) has been from those going through it not Dr's.

As for G.P's they signpost really and that's about it.

NICTIN1942DANJAS profile image
NICTIN1942DANJAS in reply to

yes i get what you mean,rebel.

Ldune profile image
Ldune in reply to

I agree I have got the most help from those who have it. But I wish the when I go to Dr's. About it that they would care enough to reserch it more. Most make me feel like it's all in my head. I took Miripex for years after awhile it made my RLS worse.(augmentation) I finally got off of it and I am doing better. I bath in Epsom salt,(it's the magnesium in it) I take 600mg of gabapentin at night. God bless I know what you are going through.

It's 4:09 in the morning and yet another night wasted due to my rls. It's slowing driving me insane. Not to mention driving a wedge between my husband and I. We now sleep in separate rooms so my rls doesn't keep is both awake. Nothing helps and trust me, I've tried it all. From compression stocking to a bar of soap under my sheets!! I've been avoiding drugs because there are usually more side effects than actual benefits. But now I think it's time to give drugs a second thought. I don't know what else to do. Thankfully I'm a stay at home house wife so I can sleep late, but that throws my whole day off. I'm so completely and totally over this!!!

crazycatlady,someone just informed me, too cut out gluten,what ever that is,hes been free of rls for a year now,but the moment he takes something,with it in,his rls returns again.so im giving it a try,let you know how it works out, rebel.

Hi. I see it's been a while since you posted this. Have you found anything that helps? I thought I had. I am taking magnesium everyday. It was gone for like 2 months. And now it's back with a vengeance..Have tried every over the counter remedy. I too am a stay home mom. But it's slowly making me crazy!!!!!

Hi, don't know if this helps anyone at all but I've had rls for over thirty years, and now 47, it's driven me insane in the evenings particularly, and ruining films, and sleep, and sitting etc etc you all know what I mean! anyway I've recently discovered that completely avoiding gluten gets rid of rls completely! My mum has also suffered all her life but has found giving up gluten has solved her problem too! Have now been rls free for over a year now, but except for the days when I accidentally have even a little gluten, and instant rls then! Hope this helps other people. I good luck.

thanks cj46 i will give it a try,will let you know the result in a few weeks time, regards,rebel.

Ldune profile image
Ldune in reply to CJ46

Thank you I will give it a try.

Well, I gotta add this to the list of possibilities. Ever since reading Grain Brain and Wheat Belly, I've wondered about how horrible gluten really is. I'm working on going gluten free, but it's not easy. I mostly want relief from arthritis without resorting to pain killers, but as an RLS fix, that would be a huge bonus! And yeah, doctors don't have time to find out much anything. All they know is what the drug reps tell them as they file through the offices or at those "continuing education" events.

wil need to try this too, fingers crossed. :) It is driving me mad !

I think you need to check on whether you need to be gluten free.

Here is some information about gluten. I cant see WHY going gluten free would help with RLS as i havent seen anything to say it does. Anyway for those who havent a clue what going gluten free is about here is the link.

prevention.com/food/healthy...

Huh what my GP knows about RLS could be written on a postage stamp.I saw a movement disorder"specialist" who actually TOLD me I knew more than him.Anyway good did come from that appointment as he wrote to my GP and sent me a copy of the letter.In the last paragraph he put"this lady is an expert in this condition and really does know what she is talking about.I advice you to let her steer her own treatment , including any medication or tests she deems appropriate"! That gave me power and if any GP was to refuse me I would be straight on phone to the "specialist" But they cant refuse me now as Consultant Neurologist tops a GP .Ha ha! .......Pipps x

My neurologist retired from a professorship at Northwestern University in Chicago Medical School. He doesn't have any idea what the cause is and readily admits it.

He gets cases referred from all over world for his innovative way of treating a disease he has no idea the cause. Well, not exactly, he knows much of the cause is genetic, but where the signal is generated to make us want to move or scream, is what he doesn't know.

A friend worked his whole career in the brain drug division of Upjohn. They tried to map the brain and discover what each section did and where most of the signals to do things comes from and he said the average intelligent person knows as much about it free as they did after spending millions.

Hi, your right in what you say about doctors & their understanding of RLS , over the years I've asked several gp and they all say the same, go away & try so & so & see how you get on, this website give us far more hope but I'm afraid it's trial & error & hope something works

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