Restless Legs

DH has it badly, thrashing about in bed most of the night and getting little sleep. He also has a heart condition which was being made worse. Was eventually sent to a specialist neurologist who said, I’m afraid, that there is no cure but after two years of trying out various combinations of medication he has something which works. His advice - press your GP to send you for expert help

Granny23

I first had it while pregnant and was told it was 'the baby pressing on a nerve' !!! Came back with a vengeance after menopause and I tried all the remedies suggested here with no success. Eventually a GP who was well versed in RLS prescribed Pramipexole which is also a Parkinson's drug = An Instant Cure. As long as I remember to take the tablet a couple of hours before bedtime I get a kick and flailing arm free night. If I forget or am out till late, The RLS kicks in within 10 minutes of lying down - every time.

If you suffer from this horrible syndrome, don't faff about with old wives tales and silly cures. Go to the GP and ask/demand Pramipexole or Ropinirole. Any side effects are small and as nothing compared to the exhaustion and sleep deprivation that RLS causes.

PS Quinine or tonic water works for cramp but not for RLS.

I agree 100%. The hospital consultant did tell me that GPs aren't always very knowledgeable about RLS. Mine certainly wasn't. I guess it sounds a strange syndrome unless you actually suffer from it.

I also laughed when told to put a bar of lavender soap under the bottom sheet. Might be an old wife's tale, but it's worked for me- worth a try.

Have endured RLS for years. Always came on whilst sitting in the chair but relieved by going to bed. That stopped working a long time ago and now it sometimes wakes me , though can come on day or night. Now extends into feet, ankles and base of spine. Drives me crazy. Its one of those things that you cant really describe, but if you have it you know. Once grumbled at my young teen grandson at the theatre as he was constantly fidgeting. Turns out he has it too but hadnt said anything as he didnt know how to describe it ?. I generally take a paracetamol to take the edge off it, though sadly my choice of other remedies is limited due to other meds. My GP is less than sympathetic but feel I will need to raise it with her again shortly for my own sanity’s sake.

I believe restless legs would cause me to lose my mind . my prescription for Ropinerole. Seems like it should be available in UK, but I'm in NYS, USA. I have many health issues, but believe the restless legs are related to the chemo induced peripheral neuropathy. Sure hope fellow sufferers can fine relief as I have.

Sorry, I didn't preview my message, the gist is the I find relief almost as soon as I swallow my prescription called Ropinerole.

My husband suffered with restless legs, Doctor advised a bar of unwrapped soap under bottom sheet, and it worked after about 3 days, I still keep one under now I’m on my own just in case.mworth a tr

rozehr

I believe restless legs would cause me to lose my mind . my prescription for Ropinerole. Seems like it should be available in UK, but I'm in NYS, USA. I have many health issues, but believe the restless legs are related to the chemo induced peripheral neuropathy. Sure hope fellow sufferers can fine relief as I have.

It is available in the UK - I was prescribed it. I agree. It worked almost from the very beginning and my dose was increased slightly. I took it for six months and was weaned off it again. I now have RLS occasionally, but I can cope with that. Having it every night was driving me crazy too. I have diabetic peripheral neuropathy, which can't be cured, but having RLS on top of that was hellish. The two are often associated.

handbaghoarder

Have endured RLS for years. Always came on whilst sitting in the chair but relieved by going to bed. That stopped working a long time ago and now it sometimes wakes me , though can come on day or night. Now extends into feet, ankles and base of spine. Drives me crazy. Its one of those things that you cant really describe, but if you have it you know. Once grumbled at my young teen grandson at the theatre as he was constantly fidgeting. Turns out he has it too but hadnt said anything as he didnt know how to describe it ?. I generally take a paracetamol to take the edge off it, though sadly my choice of other remedies is limited due to other meds. My GP is less than sympathetic but feel I will need to raise it with her again shortly for my own sanity’s sake.

Please do raise it. My GP didn't take it very seriously either. I was lucky there was a locum one day, who referred me to a specialist.

I used to suffer from restless legs and cramp alot but seven years ago at a family get together i tried gin and tonic for the first time and liked it. Since then I’ll have a glass nearly every day and both RL and C have totally stopped. Only get cramp occasionally in the swimming pool.

I suffer from restless legs, thrashing around all night. Dr has prescribed 30mg of codeine and it has stopped.

I’ve suffered restless leg for years and it really affected my sleep and occasionally I felt suicidal. Eventually found a GP who was brilliant and prescribed Pramipexole, it’s a sort of inhibitor and they use for Parkinsons. I’ve been on it for over 10 years now and if I ever forget to take it then it immediately comes back big time. I hate it so much really affects my life. I don’t go on long airplane trips or theatre etc as it might still happen to a lesser degree sitting too long especially in evening.

Pramipexole is what you should try. Tell GP you are suicidal, it worked for me.

I had RL a few years ago and looked it up online. Lactic acid was mentioned a few times and as I had started to take a probiotic a few months before I looked into that. Sure enough the probiotic increased lactic acid. Stopped the probiotic and the RL went away.

I have suffered from RLS for over 30 years 24/7. It has totally disrupted my life.
The movement is voluntary but it's a movement that you cannot not do. Walking can give temporary relief.
Ropinerole has been mentioned as a useful drug but be careful as it will usually eventually cause augmentation. Most docs done know this and will prescribe up to 4mg per day. But RLS experts now accept this is too high a dose and encourages augmentation. Best for control is an opioid, I use Codeine. Did your dr with prescribe it.
The cause is perceived to be a lack of brain iron. Enough iron does not cross the blood/brain barrier.
Get your ferritin serum tested. For an RLS sufferer this needs to be up around at least 75, nearer 100. especially if you take ropinerole or its sister drug mirapex/pramipexole. Don't accept a doctor telling you your ferritin result is 'normal' because normal can be 20. We need it much higher.
For speedy temporary relief a really got bath can help. Tho not for me, I need icy cold and will use a big bucket. It takes about 20 minutes for my legs to calm in this way.
I also have it in my arms.
Quinine is for cramps and not for RLS.

I also suggest you look at the site rls.org it is excellent. There is also a discussion board which is very supportive. This is the Restless Legs Foundation and they fund research. They have many pamphlets available for use with your GP. Their medical board has many of the leading experts. The discussion board has saved me on many occasions. It is US based but its membership is worldwide.

Kim 19. 9th October. ,
I have had restless legs for years. Couldn’t go to the cinema because sitting for a while made my legs twitch. I have tried Pramipexole from the GP but I didn’t like the side effects,
So, I tried the bar of soap (lavender). Under the bottom sheet. and it really works. Don’t ask me why but I have had a full nights sleep for a week now , So it’s working
I was cynical about this idea. But not now
I would urge any sufferer of this awful condition to try it.
Perhaps it’s the calming effect Lavender is known for ,

True about lavender, Lilypops. I found it also has healing properties, when made into an ointment.