Does anyone else have severe spasms in their legs. I hear a lot about unusual feelings such as prickly feelings and feelings as though a spider is crawling up the legs. My legs spasm and move by themselves, and I can feel the spasm coming on, even in my arms.

I use Rotigitine Patches which help but not always. Some nights aren't so bad but others are absolute hell and sleeping is impossible.

14 Replies

  • Yes,, I start out with that twitchy crawlie feeling in my legs and if I can't move or take meds. my legs will start to spasm. it is pure hell and can last all night. Trying to get control before it gets bad is key. Standing or walking makes it bearable, but doesn't always stop it. Soaking in a HOT bath works well and sometimes getting on my knees with my upper body resting on a chair seat will help. I'm always looking for new solutions The worst part of this for me is the lack of sleep, I sometimes go for 2-3 days without sleep and that's when crazy starts. I know this isn't very helpful, but I have to be honest.

  • Hi vintage ..are you taking any meds to relieve the problem you are having. Also do you have an uncontrollable urge to move your legs , arms or whole body?

  • Hi, I take ropinirole , I've been on it for years. The rls is in my legs and now it's starting in my arms. I think the spasms happen if I miss taking my meds.. The movement is involuntary . The first time it happened I was in hospital for some thing else and didn't have my meds with me. It took half a day for them to get my daily meds and. In the mean time my legs were going nuts and taking me with them, hence the spasms. This disease is relentless.

  • You're not wrong about your last sentence vintage-me. Sometimes I hate the thought of going to bed.

  • The movement in RLS isn't involuntary. It's just that the crawling feeling is so bad that you have to move to relieve.

  • You are right. See post reply to Spudellen.

  • Gonzo25,

    If I fail to take all my meds on time, I have such movement that even my wife, who has been with me from the start, asked what in the world is happening. I have jerking and jumping like a person with Tourett's Syndrome. I have no other illness except RLS.

    I go from a calm sane person to a real jerk without the meds.


  • That's what I'm talking about.

  • Oh yes Gonzo i get the spasms !I get creepy crawlies but if i dont move my legs then they and my left arm spasm.Like a build up then explosions!

  • I don't get the creepy crawlies but like you Pippins, the spasms build up and it is just like an explosion. I had an EEG a few years ago, which I might add was extremely painful. They put needles in my arm and leg and put electric shocks through them, and it was like being attached to the mains. The result was that they stated I had nerve damage. I don't know whether I should go back to my GP and insist that I be referred to a Neurologist for further tests to find out why I have nerve damage Pippins. I saw an NHS Neurologist several years ago who admitted to me that he didn't have much expertise on RLS and advised me to look up a specialist privately. That doesn't give you confidence in the system.

  • I also take ropinirole. Could not function without it. I get a gurgling sensation in my legs then I know its all going to kick off, literally!!!!!

    There is no control over my legs, only walking about will ease it.

  • Carol1948. I to get prickly feeling at the start then it turns to pain where you can not keep still. You have to stand up or walk about i can be in and out of bed all night, It can last from 10 mins to 24/48 hours, i have tryed short walks and long walks but i still get the same feeling , the movement of the legs is not voluntary for me i find i have to keep moving my legs to try and get some relief it dose not work i have to get up and walk about. I take 1 pramipexole 0.18mg 2 if its bad, i read someone rubs Ibuprofen on there legs so i gave it a try if i get it on at the start it works for now anyway

  • Gonzo123,

    You are where I was in around 2000. I had a broken colon and had to have a colostomy bag attached to my side for 3 months. The itching and pain was so unbearable and they gave me pain killers. When I started to heal i had to kick the pain pill habit. The RLS which for me was restless body had been quiet as long as I took opiates, but the opiate habit cannot be a solution, because it stops working and then where do you go.

    I was suicidal and told my good friend who was also a doctor. The doctor save me from self destruction by putting me on maripex, which triggered a big increase in my bad habits, including a big gambling casino habit that almost broke me. The other habits that it triggered made me go to a doctor who wasn't a friend and he put me on ropinirole time release. I am beyond the maximum dose and can only get relief that way.

    You and I are in the same boat---restless all over and unable to sleep very much and making us duller mentally

  • Hi yes i have terrible jerks in both legs its moving upwards is now in my hips its so strong my lower half looks like im fitting ! Its shocking i hardly sleep specialists diognosed rls .. Im not so sure any thorts ????😂😂

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