anyone got a cure for RLS

JUST STARTED WITH IT DRIVING ME SPARE USED TO HAVE IT ABOUT TWICE A WEEK BUT NOW ITS SEVEN DAYS STARTS ABOUT 8.0 CLOCK WHEN I,M SAT WATCHING TELLY THEN CARRYS ON FOR REST OF NIGHT DARNT GO TO BED BECAUSE ITS WORST STILL

[Hidden]

There is no cure.... If it has got so bad, then you need to see your doctor and ask for medication. I feel for you because i know how you feel.

[Hidden in reply to Hidden]

thanks just have to keep looking for the right meds

[Hidden]

Feel for you sweet ... as Elisse says no cure one day may be but not yet , i suffer with it 24/7 though feels like more have get on with life best you know how and give it your damnest and keep smiling

hope you find a dr that is understanding and you get some meds that'll help you sleep some ,

sal

[Hidden in reply to Hidden]

thanks for your reply had a couple of cans of lager last night slept like a baby woke up this morning with a right head took a tablet as well (ropinirole)

[Drwass2]

Mine is just like yours. Start around 8 at night. Sometimes goes away around 4am . The creepy crawly kind of feeling. Just have to move.

I once found that wrapping ace bandages on the creepy areas helped.

Then one night while looking like a mummy, the thought came to me about using compression stockings. For me, works great. Doesn,t always make the feeling go totally away, but it somehow satisfies the urge to move. Let's you sleep.

Many people who were skeptical, tried it and reported back success.

So give it a try and report back here, good or bad, how it worked for you.

If you need help ask me. I don't check in here often though.

Good luck

[Hidden in reply to Drwass2]

thanks will try it anything to stop the jerky creeping movements

[nightdancer]

Well, I think the best advice is that you have to see a doctor about this. When it gets to this point that you are at, it can get totally out of control, turn into a nightmare. RLS has meds approved for it, so I think maybe you should start looking into that. RLS is progressive, and gets worse as we get older. Time for you to do some reasearch, I think and find a doctor. There are no magic home remedies when you start getting RLS 7 days a week. Wish I had a magic wand! :o)

[Hidden in reply to nightdancer]

sick to death of goin to drs just palms you of with ought dont seem a bit interested tried all sorts of med the only one that seems to help but not al the time is (reqip ropinirole)but the rls is getting more & more every day just gets me down

[Hidden in reply to Hidden]

Cally21, how long have you been on the ropinerole..? You might be experiencing augmentation where the med isnt working so well, or the dose isnt high enough...if you have been on it a while then it sounds like augmentation..

[Hidden in reply to Hidden]

hi elisse been on it about 4wks (reqip ropinirle 1mg) at night if not strong enough got to take (adartrel ropinirole 0.5mg) along side it but the trouble is i am so sleepy in bed for 8.30 what is augmentation never heard of it before

[magggzzz]

The more I read on this site the more I realise how lucky I was to have found a sympathetic doctor on my first try. It makes me sad to think that some of you have not been so lucky.

[Hidden in reply to magggzzz]

sounds like youve got a good dr there what has he given you?

[Gannet]

I think that anyone who has RLS ( or in my case PMLS ) should try and have a full Polysomnography study done BEFORE they start trying the different medications designed for RLS sufferers.

Your doctor and/or consultant will have a far better understanding of your specific condition ( we are all different) when they get the analysis of the Poly study.

[Hidden in reply to Gannet]

thanks for your answers but never heard of this what is it?

[nightdancer in reply to Hidden]

a sleep study. You really need to read up on things. Everyone with RLS should have a sleep study in their future. Read up on sleep studies, and different meds you ca start, Ropinerole may not be the right med for you at all. And, alcohol and Ropinerole do NOT mix well at all as well as alcohol and RLS. FYI

[Gannet]

It's basically a sleep study. You stay overnight in the hospital or clinic that has the facilities to carry out the study.

Numerous electrodes are attached to you body and these measure everything that goes on when you are asleep. Brain activity (disturbed when you twitch during "sleep") heart rate, Blood pressure and numerous other readings are taken. There is a camera and a microphone in the room and these check on your RLS movements and check if your snore and if so could it be a sign of Sleep Apnea ( we won't go there today !! ).

You go to bed all wired up to a little power pack and remarkably you do fall asleep depite all these wires attached to your body.

The hosp. will probably has a speciailist technician who will read and analyse all the results afterwards and send a report to your doctor or consultant.

It's really fascinating the amount of data you get.

Come back to me if you need any more advice.

Good luck

[Hidden in reply to Gannet]

thanks for that but the meds i,m on at the moment (ropinirole) i can sleep for england they make me so drowsey have to take one every night about sixish because i no the rls will start about 8ish by 9.clock i,m in bed every night just spoken to a lady whos told me what to ask for at my GP so will let you no if that works thanks

[Hidden]

Ropinerole can make people very sleepy, i only took it for a week on the lowest dose a few years ago, i had to go to the next dose up, and i could have slept for England too the next day. I came off that med.

Just for your info for the future, augmentation is when the medication usually the dopamine ones, start to work against the RLS, starts earlier in the day and doesnt work so well at night, if you up the dose it works for a while then you start again to get RLS earlier in the day and have again bad night...

[Hidden in reply to Hidden]

been given 3 meds to try so goin to see gp (pramipexole, rotigonine patches) i will try anything, i think its just trail & error to see whitch one suits.

[nightdancer in reply to Hidden]

IT IS ALL trial and error. NOt one person here can tell you what wil happen. We can tell you what MIGHT happen. Sounds like you need to be on a different class of meds. I cannot take any of those at all, so you ae not alone. Watch the alcohol though. not kidding about that one.

[Drwass2]

Have you tried the compression stockings yet?

If so please indicate what you used. And the results

[Hidden in reply to Drwass2]

no i havnt what type do i need,? had a bad day tues night took a pill a couple of hrs before i went to bed didnt work was going spare took another pill this time half a pill, still took a while to kick in but eventually it worked but when i got up the next morning got a rite hangover felt as though i,d been on the booze all night tried to make an appointment to see my GP youve no chance of getting in the next day got to wait while next week to see him,just have to try and cope the best i can,have a nice day all

[StevenSims]

Hi, 2000iu vitamin d3 stopped my spasms but you will need to take magnesium with it.

Best wishes

Steve

[Drwass2]

As for the stocking "cure" you can at first try store bought "support" stockings or pantyhose.

If it seems to work but not enough then step up to medical grade compression stockings or pantyhose. May by you doctor can help but basically. You need to measure the circumference of 1) your ankle 2) your calf 3) your thigh. Sometimes you need the length. They come in light (18-21mm), medium (20-30mm) or firm (30-40mm). I would stay with the light or medium. They are very tight at the ankle an gradually decrease as they progress up the legs. Some drug stores do carry some.

For most people who actually tried them it seems to work. For me, it seems to satisfy the need to move, can lie still and then sleep tight.

Please try it and report your results back here.

You can send me message if you need help

[flower-girl]

Low Dose Naltrexone...A Cure For RLS.

flower-girlflower-girl 2 minutes ago 0 Replies

I have, or I should say, had, extremely painful primary RLS and used to be on pregabalin and morphine...which I have to say worked like a dream come true. I tried Ropinerole for a while but it made me feel absolutely awful. However, the weight gain with Pregabalin was a problem and I didn't want to be on morphine for the rest of my life.

I started researching a drug called Naltrexone because in very low doses this can stop RLS and all sorts of other health problems (I also had polymyalgia) by causing your your brain to produce 300% more endorphins straight after the drug has finished working (after 4 hours).

These endorphins are your body's own natural pain killers and also healers. It is now 3 months since I started using an ultra low dose (in micrograms) to wean myself off morphine and I'm currently 3 weeks without pregabalin (which is another nasty drug to withdraw from).

Because I'm no longer on opiates I am able to take 4.5mg of low dose naltrexone every day. This drug is almost without side effects , other than vivid dreams, and initially it upset my stomach. Since I've had the sublingual drops I don't have the stomach problems.

I can report that although the RLS is not yet gone completely, it is far better than I could ever imagined. Before, when I thought of the prospect of having to come off the morphine and pregabalin, I would be in total and utter despair, remembering how bleak my life was when my RLS was at it's most painful. Now the only tablets I take for pain are paracetamol and ibuprofen.

Because initially I wasn't able to get LDN from the UK supplier in Glasgow (Dickson's) they wouldn't supply it because I was on morphine. I watched a video on Youtube where the late Dr.Bahari talks about how LDN came about. On the bottom of that screen was a website that sold Naltrexone that you could then dissolve with medical distilled water and take in very very small amounts to help you wean off opiates....there is even an absolutely brilliant Facebook group called NOPE which have a mountain of information on how to titrate these doses and all sort of other useful information, which, their help and support and of course ULDN, I am where I am today....and full of hope for the future.

LDN can help all sorts of diseases and RLS it seems is one of them. I'm not completely out of the woods yet, but from where I was five years ago (desperate and suicidal) I'm in a totally different place today.

PLEASE look at these videos and start doing your research. You too can get relief from this terrible blight on your life like I did....

I inherited RLS from my father. He died just last month but right up 'till the end, his legs were hurting and he would rub them like I used to do...I wish he could have known the help this drug could have given him.

youtu.be/rll1A3aFhjc(Not working as expected?)

youtu.be/FDCn0JWv6Io(Not working as expected?)

ldnresearchtrust.org/ldn_fa...

[openhearter]

Gabapentin