Not RLS ?

Not RLS ?

I swear I am about to go l mad. I am wondering if this is RLS ? This is what is happening when I want to lay down for the evening my feet & legs don't want to. It is a very strange sensation my feet & legs start drawing up, like they are having spasms. It usually is only 1 @ a time. They hurt so bad, I walk, stomp, shake, cry. I do everything I think I can to make it better but it doesn't. I wonder if this is RLS or something else. But I will tell you I feel like a walking zombie 1/2 the time. Can someone please share there thoughts.

Thank you Reggie Blunt

36 Replies

  • Hi not sure but ,sounds like it ,you should go get checked out ,RLS ,mostly feels like things crawling in your arms ,legs , or other parts and sometimes twitching , and sort of a shiver lots of different feeling for everyone if you go to some of the older posts you will get more info , until one of our more experienced readers come on they will help you more ,,it's not a nice thing to have

  • Hi doesnt sound like rls because you dont usually get pain with rls .

  • If you look at the RLS U K leaflet"What is RLS" you will see it says ....."Many of those living with RLS experience varying degrees of pain". Mine can be very bad

  • Hi well have had rls all my life even as a child and have never been in pain with it .

  • Some people DO suffer with pain and its accepted as part of RLS.

  • You have got to be joking I get terrible pain ,if you don't you are very lucky

  • Do you have a urge to move your legs, as in a urge you cant resist. Having that urge to move your legs is the most important part of the criteria of having RLS. Are the sensations stopping you from sleeping at night, do you have to get out of bed to pace to get some relief, then go back to bed and it starts all over again.

  • Deffo..infect chopping them of has been an option lol x

  • oh yes all of that, I stomp the floor, shake my feet, its uncontrolable

  • oh ever since I was a little girl, now that I am older it comes on almost every day & night.

  • It sounds like rls, the overwhelming urge to move ur legs to only get seconds of relief, i get pains in my legs also, especially the next day because uv moved so much its like uv done a marathon, iv went days without sleep because unfortunately i get it during the day also wen im suffering a bad spell, speak with ur doctor for some help.

    Leanne x

  • Thanks Leanne

    I puzzle a bit about why, after a "good night", my legs feel so tired and achy. I have said to my wife it feels like I have been on a treadmill all night. I am waiting for a sleep study but have been waiting ages.


  • martino, you sound like you have PLMD which happens at night, you are kicking and moving while you are asleep. Ask your wife if she thinks you move alot in the night. Thats why you feel so tired the next morning when you have been asleep but moving most of the night. Your brain is aroused when you are moving. A sleep study will confirm it, WHEN you get that appointment through.

  • Thanks Elisse

    My wife has Dystonia and takes, amongst other things, Amytriptelene, so if she gets up in the night she is too spaced to pay much attention to whether I am moving around. However because of my movement we are now in zip and link beds which give us separate beds whilst in the same room. Often it is the movement in my legs that wakes me up and often that means sleep is over. This morning it was 5.30. I take clonazepam which usually gets me off to sleep quite quickly although last night I just had to lie there with spasms waking me up as soon as I dozed off. Fun isn't it!! In theory a sleep study was requested by my neurologist in August 2015 and again in July this year.


  • Flipping heck.!! You have been waiting since over a year ago for that appointment.!! PLMD can wake you up. If you are getting sensations which wake you up then thats not PLMD as its only RLS that gives us sensations which either stops us from sleeping or when we do get to sleep can wake us up. A clue for PLMD is whether your bedding is all over the place as kicking while asleep you have that bedding in a unkempt mess.! People who have a doggie sleep on their beds find the doggie goes and finds somewhere else to sleep as they can get kicked OFF the bed. :)

    Good luck with getting that appointment soon. I would be asking to get it chased up yet again.

  • yes I have went without sleep as well

  • Oh dear , it sounds very familiar, I have suffered with it since a child, and am now in early 60s, so you have all my sympathy. It is the most difficult condition to describe to anyone who is not a sufferer isn't it! It does sound like RLS, which is a compulsion to move one leg or the othe other, never at the same time, as this is a central nervous system disorder. Sometimes it occurs in the arms as well, which is a nightmare. You need to be referred to a neurologist as many GPs have little knowledge of this miserable condition. I recommend going privately if you can, just because of the long waiting list. You will then get the right help. I have to say that it still needs careful management to avoid making it worse. I am speaking from years of my own experience. I take as little ropinerol as I can, take a day off from it regularly, and avoid ammitriptyline like the plague! Hope some of this helps.

  • omg yes I get it in my arms its like that is the begining a warning sign.

  • I generally describe RLS twinges as being liked pulses of electricity, passing through whatever part its passing through. Not painful, perhaps somewhat uncomfortable.

    Even if not painful, after a few days with no treatment and perhaps no sleep.then the prospect of bringing death much closer doesn't seem so bad really

  • Tramadol is the only thing that works on me 150bin morn wrong night if come down from 300 x

  • geez no wonder mine does not work 50 mg2 daily if needed

  • Everybodies dose can be different for taking Tramadol and getting relief. Some find two 50mgs at night is enough.

  • Hello..

    For me it is like having epilepsy in a way. In the early evening, the spasms in my legs start jerking and spasm uncontrollably. No one wants to sit or lay next to me. It is a horrible feeling and I have found relief from Mirapex. I am on a high dose and it only works if I take it early, for me that's about 4 pm. But yes, my legs draw up too and have spasms and I've had this since I was a teenager. I wish you the best Reggie!

  • Hello your the only one that had symptoms like me. Its horrible. I cry alot out of frustration & pain. I hit my legs I stomp, of course I walk & I feel like a zombie. If we are out or with friends I try to hide it but you can't. I hate it.

  • I would say if your legs/feet are moving uncontrollably (ie without your conscious decision) then it's not RLS. RLS makes you have to move as the sensations get so strong you just have to, rather like trying to resist scratching an itch - in the end it becomes too tortuous to resist. If the movements are out of your control then it sounds like it might be PLMD or something else.

    I've had RLS my entire life. To me the sensation could be described as like a tickling, or creepy crawly, sensation, under my skin, rather like my muscles are itching and the only way to stop it is to move. I don't suffer from pain particularly, although my legs can ache. Having said that, thumping the top of my thighs gets rid of the sensations (momentarily) too!

    I hope you find something that helps you. I was prescribed Tramadol for back problems, and the upside of this has been that I've not had a bad episode of RLS for a long time - actually it was when I started trying to stop taking Tramadol that it was last hell.

  • I have RLS and it is exactly like you have described. You can't sit or lie down the only thing I can do is walk .Im sometimes walking for hours .i get a lot of pain with my RLS it's different for everyone I also have fibromyalgia and that's very painful .xThe min it starts take some painf meds .Go see the doctor xx

  • I have bith too and arthritis

  • Hi ,sorry you got both I also have arthritis and many other things wrong . Hope your having a reasonable day , we have horrendous rain and I have just come to my craft room to make Christmas cards x

  • Maybe it has to do with your spine, and when you lay down it puts pressure on the nerves that run down to your legs. You could have RLS in addition to a spinal problem. I myself, do have RLS, but I also have a sacroiliac (tailbone joint) that, from various falls thruout my life, gets out of joint, and causes various pains and discomforts. It also makes my RLS worse.

    I go to a chiropractor for my SI joint (and the rest of my spine.) You may not have a problem with your SI joint, but you may have a spinal issue of some type. Most people do not go thru life with their spines always staying in place. When one lays down, this puts the spine in some positions, unlike standing up, that can press on different nerves.

    I suggest a chiropractor, to see what shape your spine is in. They are usually quite knowledgeable about RLS, as well.

    You could also need calcium, potassium or magnesium for nocturnal leg cramps. They are also called Charley Horses.

  • I would agree with the need for the minerals you mention, lauraflora. But would also recommend these for RLS. It's like the muscles in your limbs aren't quite sure whether to relax or tense up and you end up getting an incredible urge to move them. Moving them, or even stretching them, can help. This seems to give your muscles the right signal to relax. It's important to reduce stimulants at night a well, as this confuses the muscles. It would be worth getting a test to determine any mineral deficiency, or simply add a mineral supplement to your diet (I wouldn't advise adding potassium without medical supervision). Calcium and magnesium should help.

  • Yes, I have recommended them, esp. the calcium and magnesium for RLS. Also, another important one is Iron (esp. in the bisglycinate form which is easy to absorb and does not cause constipation.) Iron is well noted as being important for people with RLS.

  • Good morning, my RLS reacts the same way. It is horrible. Does it feel like your leg or arm muscles are tightening up really right and then they just let go and spasm? The tightening hurts like heck and the spasms are just as bad. I have just been put on Neopro and I feel like a totally human person again.....

  • I don't have pain with my RLS but I do have sensations that feel like bugs crawling inside my legs and, sometimes, hands. Never both legs at the same time like you. Walking does help temporarily. I tried mirapex but am really afraid of the long term use so I switched to Gabapentin and it really works for me. I take 300 mg at 6-7 pm and 300 mg at 10 pm.

  • I have had RLS (and arms) for many years now. I have pain with mine too. I started off with Ropinirole, which were okay for many years. Then got Augmentation so had to come off those. I now take 1200 mg Gabapentin 3 times and day and dare I say they are working fine, even better than the Ropinirole. I hope you find one something to help you too.

  • Oh, I forgot to mention - tho my RLS is hardly bothering me now - I always described it as an electric tickle running down one leg or the other, sometimes every 10 or 20 seconds apart. Never pain or cramps.

  • hi you defiantly have RLS its B------ horrible are you taking any meds at all,? that's why I'm writing this I'm up half the night because I cant sleep cause of my RLS,yes as soon as you lay down & relax it starts first in one leg then it goes across to the other, are you taking any painkillers? at all. then the next day because you cant sleep you are walking round like a b------ zombie.

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