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

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!

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

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.

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

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.

Coolgran, horrible for you (and other sufferers).

Requip - sorry, slip of the finger.

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

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.

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.

Coolgran It sounds truly horrible.

Also a tiny dose of equip (which is an anti-Parkinsons drug) might help - you should discuss this with your GP. It is the drug of choice for your problem.

Also it can be caused by iron deficiency so that is worth looking into.

Well, I dropped off and got about one hour's sleep.
You'll never guess what woke me.... I'd been thrashing around the bed so much I didn't know where I was in the bed...And fell out of bed.
66 years old and 'fell out of bed'. !!
DH heard the thud and came to help. Felt such a fool.

RLS is Restless Legs Syndrome, a neurological movement disorder, where horrible sensations present themselves when you try to relax. Most commonly in the legs, I also have it in the arms. It can be anywhere in the body. The sensation is usually one of something creeping under the skin and the sensation builds up until ....you just have to get up and move.
So, car travel,air travel, theatre, movies,....All of these become very difficult.

If anyone here has never had this, let me tell you it is torture. Coolgran you have every ounce of my sympathy - that is perfectly dreadful.

I get it in response to the anti-depressant I take; and I then found the best time to take it in order to be fast asleep before RLS starts. I was offered an anti-seizure drug for it, but decided that as the RLS was drug-induced I would do better to try and jiggle the timing than to add in another drug. Has you GP offered you this? - carbamezapine (?sp) I think it was.

If it does start I take one quarter of a sleeper and it takes the edge off it sufficiently to make it bearable.

Also it is worth looking into any other drugs you are taking in case one of those might be causing it.

Boy, do you have my sympathy - it is miserable in the extreme.

Oh coolgran I feel so sorry for you, what a truly dreadful thing to have to put up with. I had bouts of RLS during both pregnancies, but not for prolonged periods. Even so it had me almost at screaming pitch at times, so I can only imagine what this must be doing to you.
I sleep very badly, have done for years. I wake up repeatedly and each time I wake I have to pee, so I'm in and out of bed all night. Two nights ago I had a particularly bad night - woke and visited the loo 8 times and each time it was difficult to drop off to sleep again with the result that yesterday I was exhausted all day. But at least I can lie in bed, at least I'm getting rest, no matter how broken my sleep is.
I do hope you eventually managed some sleep last night. and ((((hugs)))) for you.

I tried a magnesium spray. Much to my surprise it worked

I also didn't realise how severe it could be and can only send sympathy. Is there an RLS helpline as there seems to be with many conditions? Others experiences can be helpful.

Coolgran - Hope you can get some rest today with a nice

Coolgran65 I have a friend who has that. Your's sounds particulary severe. I hope you get some relief and rest soon. (((hugs)))

Hi cg - that sounds horrible. I don't know about RLS. Is it only a problem at night - are you able to catch up on sleep during the day? Or can it strike any time you lie down?

You have my sympathies, bad nights are one thing but the restless leg problem is awful. I had a short bout of this a few years ago and hope it never happens again. It stopped when I stopped some anti-depressants that I'd been taking for a while. My mum had something similar which stopped when she stopped taking statins. Hope you get some sleep and some relief from the RLS soon.

It sounds awful. I always assumed that it was something mild as I dont know anyone with it.

coolgran what a dreadful experience. Do hope you are sleeping soundly now. Your post puts my own on/off sleep pattern firmly into perspective.

I agree with everyone else! This must be so awful for you! I do hope you are fast asleep now and ignoring us all.

I do hope you can at least catch up on some sleep today. This sounds literally like a form of torture which would be taken to the European Court of Human Rights. There must be some help available out there for you.