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

I cannot believe that I actually wrote and put my original two posts out on the Forum. It was a pretty dire few hours. On the other hand I'm pleased if it has enlightened even one person to how this condition changes lives, and relationships. I'm so lucky that my dh 'goes with the flow'. And knows if I'm not in bed that he'll find me somewhere

Thank you all so much. What wonderful responses, I am surprised at how many.
I eventually got about 3 hours sleep and feel a lot better, the symptoms are generally at their calmest around morning time. Generally the condition follows a circadian rhythm i.e. are worst at night. But actually can occur at any time, in any part of the body, at a time of rest.

I'll try and answer everyone's excellent comments.
This could be long and I hope that you wonderful folks stay with it to the end....

Luckygirl I already take Requip for the symptoms. Unfortunately one of it's side effects (or else it's a component of RLS) is that it can be 'alerting' making sleep difficult. Yes can be due to the iron deficiency... usually the deficiency is the ferritin serum iron, i.e. the iron in the brain.
The anti seizure drugs are now being considered as first line for RLS even over the Requip. I've never tried Carbamazepine, or any of them, as I've heard of awful depressive side effects.
Yes, many medications can cause/trigger RLS, antidepressants, antihistamines, Benedryl, and each person's trigger could be different. The condition can also be genetic.

Indinana Sometimes the symptoms are under control and it's just the alertness/insomnia, but with just the insomnia at least I can lie in bed and read.

Galen thank you, I have a magnesium spray but don't see much benefit. I will try anything, within reason

annsixty yes, there are support forums. I belong to one in particular which is excellent and thorough, and very supportive. It is actually the discussion board of The RLS Foundation which provides research funding for the condition. The Foundation's medical board is made up of eminent experts in the treatment of the condition, one of whom responds speedily to emails seeking help and advice.

Mariclaire your link is excellent, one of the best I've seen, great for explaining to non sufferers exactly what RLS is about.

Just to note: many (most) GPs are not up to speed in the treatment of this condition, and indeed neither are many neurologists. After all, it is not life threatening in itself. My GP had to look up the information on proper treatment for a severe sufferer on the web site of the RLS Foundation previously mentioned. Fortunately my GP was happy to be guided. He is willing to supplement my Requip medication with Cocodamol and/or Tramadol Slow Release.

Sorry to have made such a long post - I'm almost embarrassed at my verbosity - thank you all.

It would be great if even one sufferer of RLS gained a glimmer of useful information.

Jings it is indeed horrible.... I used to say to myself....."" it's a sensation, not a pain, ignore it""..... hmmm, no chance, this is not possible.
It's a different kind of pain.

I've been the lady at the dinner table on my feet, this is why we always book a table in a corner/next to a wall, so I can be as discreet as possible. Or standing full upright walking on the spot, in the middle seat in economy on a trans atlantic flight.
Honestly, there comes a time when you no longer care what anyone else thinks. I just say I have a movement disorder (which is true) because sometimes folks who have heard of the condition think it is funny or just an irritation.

Coolgran65 I can only imagine what you go through and hope there's a breakthrough soon in researching an effective treatment.

Requip - sorry, slip of the finger.

Coolgran, horrible for you (and other sufferers).

I have it too, from time to time. Sometimes it's every night.
This has been discussed before, about 18 months ago.
Coolgran - have you tried sticking your leg out from the covers, foot on the floor? That sometimes works for me.

Here's the thread, I see you commented on it too Coolgran.
www.gransnet.com/forums/health/a1211702-Restless-legs-at-night

TriciaF thanks but it's way beyond being helped sticking my foot out - though I agree that a cold floor can be soothing whilst walking and doing leg stretches. Once I stood out barefoot in the snow in the middle of the night.

I'll go look at the linked thread, thank you.

Not everyone will agree, I know, but a friend had huge relief from Marijuana.

You do seem to have it very badly - I am sure the support forum would be able to point you in the direction of a neurologist with a special interest in it, so that your GP can make a referral.

I am glad too that the subject is being aired as it is very difficult for those who have never had it to understand why it is so very distressing.

Mine can also be triggered by metaclopromide which is used for post-operative nausea. I had to make sure that the staff knew this when I had my hip replaced as RLS coupled with the op would have been a bit hard to take!

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

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.

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)

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

How is it going now? - any improvement?

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.

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 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 ....

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

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?

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

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.

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.

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)

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.