RLS 3rd really bad night of no/little sleep. I'm pacing in the garage in the wee hours.

Never realized how bad RLS was and that you had to keep walking around, I do not sleep well but at least I can lie there without discomfort. I do hope your doctor can prescribe you something that will help. New medicines are being developed all the time, so good luck.

The DT Article appears to be about Periodic Leg Movements.

My understanding is that Periodic Leg Movement is actually a different disorder from Restless Leg Syndrome, although very many people with RLS will also suffer from PLMs. Thankfully I don't have the PLMs.

Periodic Leg Movement = involuntary movement (no choice)
RLS = the horrible sensations build up and up until the sufferer must move to seek some temporary relief. (chooses to move)

I might not have explained this very well and please excuse me if I've come across as 'schoolteacher-ish' in my manner.

Thank you Alea for this because as a sufferer of RLS I will try anything that has any chance of being helpful and I will indeed try the Cats 'Claw' even though my condition is RLS without the PLMs.

I have just read the following extract in James LeFanu's Monday column in the Daily Telegraph and thought of you!

Finally, a reader writes to tell of his wife’s fortuitously discovered remedy for her Periodic Leg Movements (as they are known) when her dropping off to sleep is interrupted by an involuntary, powerful lashing out of one or other of her limbs. “I have the bruises to prove it,” he writes.
His wife is also troubled by rheumaticky aches and pains, for which she recently started taking the popular Peruvian remedy Uncaria Tomentosa – aka Cat’s Claw because of the hook-like thorns on the woody vines from which it is derived – which has been “100 per cent successful” in controlling the periodic leg movements.

I hope it is of some interest and even help!

Anaemia can indeed be a factor in RLS but more likely to be the ferritin serum iron level in the brain. This isn't usually checked in an ordinary routine blood check and needs to be requested. Ferritin level of 20 is ok for a non sufferer. If you have RLS it's best up around 100 especially if using a dopamine agonist medication, ie pramipexole or ropinerole (requip). A DA medication can also eventually cause augmentation which is when the medication actually makes the symptoms worse, a very good reason to keep the dosage as low as possible.

Marijuana and its availability.... believe me..... an absolute 'no no'. I'd be willing to have a go eg in USA where it is legal in some states. But definitely not in UK .... would not consider it...DH career etc

Have you had a blood test to see if you are anaemic? I have read, that anaemia can be a contributory factor with restless legs syndrome.
It might be worth a try.

two things to try

'Magnesium Citrate Bath Salts', (these are better than taking Magnesium pills/tables as your body absorbs more magnesium through your muscles)

'Turmeric' capsules

If you require more information look up on internet for beneficial properties.

It took me years to realise that, whilst bathing, exercising, massaging etc. can give very temporary relief, the problem does not lie in your legs but is due to chemical imbalance in your brain. Something is faulty in the mechanism that should shut down parts of the brain to allow you to rest or sleep peacefully. The more tired you are, the worse it gets. It is also known that it tends to become more persistent as you get older. I would urge any sufferer to speak to their Doctor about trying Pramepexole or Roprinol (sp?). For those who get spells of RLS and then weeks without note, that these pills are not cumulative i.e. you can take them when you need them (preferably 2 hours before bed-time) and then save them until the next time RLS flares up. I have taken one tablet at 2.00 am, had a walk about and been back in bed and asleep by 3.00am - Magic.

Coolgran65. No offence meant, but you are perfectly placed to access Marijuana if your Husband is in law enforcement.

Coolgran I can definitely sympathise with you. I have RLS. However, I can go a few weeks without it or may have it for nights on end. I seems I get it when just sitting down though so I'm lucky. Seems to be when I'm tired and really awful if it starts when I'm on the train, in the theatre or cinema or on a plane. The thing that does help me though mostly, but not always, is I wash my legs before I go to bed or shower and moisturise my legs. I know you may have tried all sorts I'm sure but thought I'd just mention it x

Coolgran RLS drives me mad, it's the bane of my life. I've had it on and off for years and, like you I can be pacing the house half the night. I find that it helps if I try doing exercises and things that stretch my leg muscles - one is to stand about 12 inches away from a wall and lean my body into the wall keeping my feet away from the wall and planted on the floor - you'll feel your muscles being stretched, I do this about 10 times or more.
I'm on a sleeping tablet zopocline at present for a different reason - stress with my elderly mum having a hospital spell etc. It seems to be helping me get an good nights sleep without the RLS. I've read that it can be caused by a deficiency of magnesium and iron so I take Magnesium pills - the spray didn't help much. Good luck trying to find something to help with it. I could cry in frustration with it sometimes

Thank you for the tip off about Valerian and Kalms. I have had some really bad nights recently and got up to make myself Valerian tea, then wondered why I felt worse than ever? I must only have very mild RLS compared to what I am reading, but I dreaded going to bed because I slept so badly because I could not get comfortable. Then I tried Kalms-and like the Valerian tea, worse than ever. At least I know now.

My apologies to posters, I don't know how I missed the posts in the last couple of weeks.

petra Yes I've heard of the benefits of marijuana, obtaining it is another matter, and also dh being in law enforcement ??

Luckygirl regarding a neurologist with an interest in RLS. My GP referred me to one.....ha ha, excuse me while I laugh .... he honestly knew little and ended up telling me that if the co-codamol was of benefit that I should continue with it. That was it, he didn't even know that ferritin serum levels should be up around 100 whereas a non sufferer is ok with very much lower levels. And I paid £250 to see him !! I honestly think my GP was keen to get a consultant neurologist give the ok for me to remain on Co-codamol.
About surgery, yes I also have a leaflet indicating what particular anaesthetics/drugs should not be used in a situation of surgery.

LuckyDucky Thank you. I do keep a record of sorts and if I have a relevant doctor appointment I use a spreadsheet with sleep times, the amount of sleep, medications taken etc. When my doctor saw it set out so plainly he was horrified at how little sleep I get. Some doctors may feel undermined being provided with information especially from the internet, but my GP is great. The above mentioned neurologist was not so accepting !!

Welshwife I've used Voltarol for aches/joints but not for RLS symptoms. On occasion however I've used BioFreeze.... not sure that it was great but anything is worth a try and did feel temporarily comforting and cooling.

Duncruin... the bar of soap. Have to admit that I tried that one, without beneift. Some thoughts are that it could be a placebo effect.

lilian1 I do love my strawberries with cereal before bed, with yoghurt in the morning Nothing seems to change the fact that sleep doesn't come or stay readily.

sara4 To divide tablets I use a pill cutter. You'd probably get the pill quartered but not 'exactly'. Depending on the manufacturer my zopiclone comes in different shapes.

MamaCaz Yep... the Kalms were a nightmare, I think I've read that the Valerian is not a friend to RLS.

Granny23 I had not originally planned on retiring at 60, but as it happened was more than ready to do so. Like you, could no longer function efficiently on so little sleep. I also take Citalopram and don't find that they annoy me. The Quinine I thought was of benefit for cramp (not RLS). You are taking Pramipexole, I use Ropinerole, which is from the same family.

Thank you all, and I'm so sorry for the length of this post, but I wanted to respond to everyone who was kind enough to post and also to do it while my legs/arms are peaceful enough to let me do it. Sometimes I'm walking on the spot while on GN. ........ (hysterical laughter)

I have just read your post about RLS, I have had it for years. I was about 18 when I first got it. It wasn't too bad for a few years although it did ruin a few nights at the cinema but in my late twenties and early thirties it got much worse. I started to get it in my arms as well so I would be thrashing about in bed trying to get to sleep. No one I felt believed me and I didn't know any one else with it. What 'cured me' was getting gall stones in my early forties. I was given tramadol for the pain and after a while I started to realise that they where working on my RLS as well. I was 44 when I had my gall stones removed and at the age of 56 I am still taking 300mgs of tramadol a day. As long as I take them every 20-24 hours I never get RLS, it does mean that I have to make sure I always have them with me but its worth it never to have to go through what you are. You have my deepest sympathies, I know just what you are going though.

Just reposting my contribution to the thread from a year ago

My RLS was so bad that I was forced to pack in work two years early. I could not survive on 2/3 hours sleep per night + daytime catch up sleep at weekends. I tried all known remedies, including 6 weeks on Quinine tablets, all to no avail. I even tried to do with out my anti-depressants (citalopram) thinking they might be the cause but all that happened was that I stomped about all night, crying my eyes out.

Eventually, when my right arm decided to beat time alternately with my legs, I threw myself on my GP's mercy, declaring that I could no longer carry on. She prescribed 88microgram Pramipexole, to be taken 2-3 hours before bed and I have slept like a log every night since bar 2 nights when I had been out and omitted to take the pill. Still get the occasional twinge or two if forced to sit still for long periods but try to keep on the move anyway. Personally, I can see no reason to avoid available drugs when they can make such an improvement in your quality of life.

Nothing to add to that except that the Pramipexole continues to work it's magic ever night. Only time I get RLS now is if I try to have an afternoon nap - nae chance - kicking leg, waving arm, etc. My sympathies to all RLS sufferers - it really is torture.

After posting, I realized that I'd accidentally missed a whole load of the answers already given, so I apologise for repeating anything that might already have been said

You have my sympathy too, Coolgran. I suffer a much milder form of this and that is bad enough!
I made the mistake of trying Kalms or something similar recently when I was sleeping badly, and they led to the worse night's RLS I've ever had!

Just a thought - you say that you've just had three really bad nights in a row - I don't suppose you have started taking any new medication that might have caused this, have you?

How do you quarter a sleeping pill? I take the occasional zopiclone and they are too small.

I hope my tip will help it sounds strange but works for me if I eat strawberries and low fat yoghurt at supper for pudding I seem to sleep very well I would rather not take pills so I was pleasantly surprised it works my hubby always ate fruit in the evening and used to sleep soundly ....

This sounds totally crazy but I was recently told by an American lady that she sleeps with a bar of soap in her bed to alleviate the symptoms of RLS. She said it worked for her.

I have suffered with RLS from time to time over the years and have no real idea what triggers it or stops it but for me I found that rubbing Voltarol on - all over calf and any other bits, did help a lot. may or may not work for you Cool but perhaps worth a try.

How is it going now? - any improvement?

My goodness Gran 65, my heart and sympathy go out to you. And here I am with a smaller medical problem.

Luckygirl's advice is worth a try.

My DIL strongly advised me to be forthright with the GPs Weeks of me pushing and logging effects, pain levels, lost sleep, etc. saw me onto an NHS urgent " list.

Can you or your DH keep a log of - dates, hours awake, hours asleep and type of sleep and reaction to medication? It's so much easier to inwardly digest.

Our thoughts, hopes and good wishes are with you.

When perplexed I go online, whatever the time. Often the US is ahead of us medically. Please Don't let it stop you. I hand over my latest
note(s) from a folder, to any 'new' doc or specialist. Then sit back and watch. It's usually 98% positive with a smattering of respect and a heap of surprise .

Good luck

I've heard of RLS but had no idea it could be this bad. My sympathies Coolgran65

I've just noticed the time! Mine is Restless Brain Syndrome! (Sorry don't mean to be flippant)

Coolgran65. I don't know if you know anything about Marijuana but you don't have to smoke it. You can make cakes or biscuits.

Petra I have heard that as well. It's supposed to reduce muscle spasm. In fact marihauna appears to have a lot of uses as a medicine.
medicalmarijuana.procon.org/view.resource.php?resourceID=000883