I don't think we have asked this question yet, how do each of you describe your RLS when you are explaining to someone who does not know?

Tell us what it feels like for you-painful, electrical, etc. FOr example, I always describe mine as an "electrical explosion". It feels like the RLS goes right down my spine, into my legs. Feels like lots of electrical charges running through before they explode, and then it repeats all during an attack.

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  • hi, well same for me, but just in my legs, like electric shocks up and down my legs, weird tensed up feeling and painfull

    .It gets bad in my feet, feels as if someone has go hold of my toes with pliers, squeezing them, and after an attack, the next day my legs are very sore and achey,It usually starts with a strange feeling like something crawling under my skin, then it makes me jump,like the electric shock thing, and then after a while the pain starts, so i end up walking around for hours sometimes, i can't just stand up,i have to walk,or the shocks seem stronger, sometimes i lay in a really hot bath, that ease's it a little.

    jean

  • Ditto. Especially the part about when you get that first shock and you jump. That is my signal to take the extra medications immediately or I know I will be in trouble very quickly. :o) Mine goes from zero to 60 when it hits me in the late afternoons, or from 3 am to 5 am can be my "battle zone" time. That is when I wake up with it, and then it has gotten ahead of me. What a beast. :o)

  • the leg pains the day after are horrid, no pain meds seem to shift it, except tramadol, but my tummy cant cope with them, so i usually try codydramol, helps a little sometimes, my worse time is 10-11 in the evenings, so no early nights for me :(

    jean

  • That is true about the pain meds. They do not help the actual pain after a bad attack, but will quiet my legs down eventually. Too bad you cannot take Tramadol, Jean. :o(

  • I alawys describe it like initally i will go from being fine for maybe a day then out of know where i feel it slowly building an uncomfortable twitchness within my legs feet ihands arms or bk it builds and builds the feeling that i have to strech builds and builds untill i strecch really hard everywhere it relives for a few seconds then its back as soon as i stop streching the feeling starts to build again.and then the process keeps reapeting. Relentlesdly with always turns into a really bad attack of it.that might not gp for days or will just stop its totally got a mind of its own.Streching is my signal as soon as that streching start repeatedly i know its there its like a exremely intense pressure that builds if i try and just stay still overide it it builds to such an imense uncomfortableness that its impossable INPOSSIBLE to not move. :(

  • Also after streching and tenseing so much during an attack of it i always have alot of pain and cramping in all my muscles. So if its not my legs kicking off and bothering me its the pain in my legs feet toes arms fingers and bk that are in pain and crampy and stiff. Its a viscous circle!!!!!!

  • Wow, i find it hard to describe mine. I wouldnt say it felt like electric shocks. Sometimes my right leg which is the one that gets it most, feels buzzy and the only time it jumps is when i am laying down or just as i am going into sleep, or just relaxing

    Sometimes one leg, can be either one, i get what feels like a deep ache in the calf, like my muscle or even my bones hurt, i know it isnt cramp, its not that type of pain, or feeling. What i do know is that it is painful. If i get up in the night, i find it hurts walking down the stairs. Sometimes its a weird pain right in the back of my knee. Occasionally my shoulder and the shoulder blade gets it, always the left one...cant even describe that feeling, its not the same as my legs...but i do know i would rather have the RLS in my legs than my shoulder and shoulder blade, just dont know how to deal with it in that part of my body.

  • Agree with the electrical aspect. When they start, I have no control over them other than to keep moving them myself. I went to a 60th birthday party last night and just sat there bending and unbending my legs for two hours - luckily my friends know me well! When I get it in my arms and legs at the same time I describe it as feeling like I've been taken over by aliens!

  • This is more like me!?!?!

    Regards

    Bob M

  • Buzzing is an excellent word! When my RLS is pre-explosion mode, they buzz, or like the old description of soda bubbles in your veins. :o) I still stutter when my doc says "how does it feel again?" and I have to try and describe it after a bad night. I can explain it better after a good night, if that makes any sense, because I can think better. And thinking is questionable on any given day! lol

  • thats it !! just the description i need !! bubbles !! and buzzing

  • Yes I agree it is that horrible build up which is like something within your legs threatening to explode. And its too horrible to leave it and see what will happen if you don't move. I sometimes think if someone ever tried to stop me moving at that point I would probably get violent as it is so unbearable. Once I have cramped them through stretching countless times the pain of the cramping takes over and is more bearable than the restlessness. I also sometimes feel it in my arms and although its mainly my legs that twitch and go into spasm it is also sometimes all over. And I get itchy too though not sure if that's because it starts panicking me and making me nervous. Hate it!!!

  • I can feel if I haven't taken my tablets because I can feel a pulling sensation in my legs, so when I finally take note and recognise it I take my tabs (not good at taking medicine regularly), then if I didn't take them in time, the pulling sets in and my legs start moving. It isn't pain but it is unbearable. Before I discovered meds I would be awake all night. So the feeling is ... pulling, then jerking, crawling, not muscular but deeper inside, sometimes you can mask it by sleeping but when you wake you realise you woke because of the sensations, constant sensation - maybe like water torture when they drip water on your forehead so the constant sensations drive you mad! Am taking a med holiday soon because of augmentation, will try and see if I can try blocking the sensation somehow...yeuukk I dread the idea...

  • I totally agree with the 'electric shock' feeling. Sometimes I describe an attack like 'someone poking/pushing inside my legs with a crow-bar' ( an iron-bar ) up and down, up and down! Unbearable! I always try to stay ahead of the attacks with the medication. If I leave it too long, the RLS sets in severely for at least an hour, when it's impossible to sit or even stand. I have to keep moving. If the attack is bad then it follows with a lot of pain, exhaustion, and emotional "drama". Don't know what else to call it!

  • Elmstreet describes it so well! I can relate to all of it. Everyone on this panel is really good at describing the RLS sensations!! Something I have always had trouble with, Trying to describe it to someone who doesn't know how it feels!

    This support group is amazing! I have had so much help/support since joining.

    Thanks so much!

  • I always describe it as a stretching feeling, when you get to the end of your 'stretch', ie, the muscles are quite painful, RLS is like the end of a stretch, permanantly!

  • I always say that however you try to describe it there are just no words that fit the bill properly. I say that it makes me feel like I want to put my hands right inside my legs and scratch my bones. Even then I'm not sure that's a good way to describe it. I'm lucky that I get no pain with it. It's almost like an unbearable internal itch, or crawling sensation. I would describe it as the opposite of pain if there is such a thing.

  • with me its simply a strong urge to move my legs.its like my brain is sending a false signal to my legs.

  • Same with me. I don't get any pain (and really feel for those who do), but mine is more like when someone tries to tickle your feet and you flinch!. Just the urge to keep doing it though

  • I tried to explain to somebody the other day, I am newly diagnosed, so not sure of anything much, also have to see a neuro as I have some weird symptoms my GP isn't happy about. when I tried to explain, I said predominantly I have constant pain every where 24 hours a day, and a severe need to move my legs then my body, arms, even face(it goes stiff, as do my muscles) I get buzzing in my arms and legs, also ice cold water running up them,(weird feeling) my muscles jump and limbs jerk all over the place, tremors especially in my fingers and toes, head_ache with blurred vision and nausea, and when I turn my head or stand up I get really dizzy and my head buzzes. That's just for starters ! I suppose I should not be surprised that he now takes the mickey out of me all the time. I am thinking of asking him to stop, but that would just probably make him worse. I will probably keep quiet about it in future, because it all sounds weird even to me! I am so glad I found this site, I don't feel so alone. Best wishes to all, Caz.

  • seems everyone describes the buzzing i get that too first the buzzing within the muscles then itching all over then the arching of the back like it's going into spasm electric current zipping up and down with the urge to stretch and pull then the twisting of the ankles and stretching the legs out then as somone said the bubbling sensation rushing round popping as it does making the legs/arms start jerking going into spasm and the urge to get up and move about if it's really bad every single muscle in the body hurt as if on fire even moving hurts but have to every step ,blink hurts ,

    how does anyone describe what they feel to someone that doesn't have RLS as im sure they'd have no idea what your on about just get that smile and them turning round saying "oh you get cramp " lol hmm....

    Sal XxX

  • No one would ever say to me" oh you have cramps" and live to tell about it! :o)

  • i know what your saying lol there are times i feel like doing something specially if i haven't slept for a couple nights or so but..... i don't want get locked up lol think that would be worst so keep my hands in my pockets believe me .. :)

  • I get shooting pains like electric shocks in my hands,legs feet - mainly starting in my left hand. The RLS continues in my legs and arms with the irresistible urge to keep moving them, sometimes I am up all night which leads to me falling asleep in the afternoon. Someitmes RLS starts early afternoon.

  • Hi, just joined this site and thought I would add my bit!!! Ive suffered from this since I was about 12 and now I`m 54 and its still hard to describe...I just wondered if anyone has the same as me. It sort of starts with a painful pressure in my foot and it seems to move like bubbles through my legs, making the pulling sensation..then it feels like a contraction right through my legs and up into my pelvis so I have to tighten all my muscles and its so tiring, all that seems to help in co codamol...

  • We all seem to use the bubbles/buzzing thing, or most of us anyway. It can start at any point n the body. Yours starts in your foot. Mine starts in my left hip or thigh, which I am fighting off right now at 10 a.m. And, my whole night was quiet. And, that pulling sensation that we as RLSer's know exactly what that means, but if someone does not have RLS, it is almost impossible to describe.

  • Effervescance is the word for my symptoms; veins full of Lucozade head to toe. Leads to involuntary kicking/stretching and all the other pleasures we share.

  • Agree with the electric shock description not that I have ever had a real one! Trying to describe to doctors is the worst they look at you as though you are mad. My RLS strikes in the evenings and when I have to sit in meetings during the day I end up figgeting because I need to move. Sometimes the sensation of crawling is there too.

  • I can relate to the bubbles/buzzing thing. For me it's an internal itching which is like the feeling you get when you need to stretch but magnified thousands of times. In fact the only thing that brings some temporary relief for me is to do something that stretches my thigh muscles very hard. That, or thump the top of my legs!

  • Oh, the nights that we have to pound the legs are the nightmare nights, for sure! I can really relate to that one on a bad night.

  • Anyone else get a weird kind of pulling pain in their feet, i get this a lot, even when my rls is quiet, its like something pulling on the muscles and tendons in my feet, and nothing shifts that, and i usually end up squirming like an odiot, really gets to me !!

    jean

  • yes, I do, although rarely in my feet, although the ankles are really close to the feet! :o) I felt it all day yesterday, and it drove me crazier than I already am!

  • thats not hard for you...lol

  • Yep I get that too...it does feel like there is a point somewhere in my foot that if i could just get in there and ease the pain it would help, but i never seem to be able to find it. My left foot constantly aches.I try to roll a hard ball under my foot and that sometimes helps.

    I sometimes think there are certain trigger points for the RLS, one in my foot , one in my thigh and one in a more personal area,

    Sometimes it takes just someone else touching my feet to set the RLS off for hours.

    Still really hard to explain!!!!

    But its good to know some people understand!!

  • A heavy feeling starts to 'invade' my legs/arms which then becomes painful along with the urge to move my limbs and the inability to get comfortable as if a joint or muscle is out of place. It gets worse in damp weather and can become so painful I want to scream. I cant sit down because of it and become so tired wandering around. I have described it on occasion as being like a severe migraine where you just want to smash your head against a brick wall. My RLS affects me through the day and very rarely at night. I also find that the left side of my body suffers the worst. If it starts in my left leg/arm I know I am in for a really bad time. A lot of my friends have seen it in action and are fascinated but very supportive at the same time.

  • Seems like a lot of people have RLS mostly on one side or another. Mine was only on the left for decades, as well as migraines-only on the left. Then about 10 yrs ago, the RLS decided to start "traveling" around and does not just stick to one side any more, although the left is still the worst.

  • Mine was the same for a lot of years then about 15/20 yrs ago it suddenly started on both legs and a few years ago added my arm and shoulder to the mix. Like you my left side is the worst and when it starts i know i am in for a long long day and night.

  • Mine starts as a sharp sting like feeling, which I presume is the electric shock spoken about here. As soon as I feel that I know....i am taking a drug holiday right now from the Neupro patch, which is the best ned I have used so far, but started to become less effective, and rather than up the dose again I decided on the drug holiday. I'm 'holidaying' on Mirapexin, which is just not cutting it.. One and a half hours sleep last night, whereas the patch more or less guaranteed me a full night's sleep. I don't even see the point of going to bed tonight. My symptoms are typically a very very strong pulling sensation, unbearable sometimes. I dont get pain thankfully, but the discomfort is horrendous. It affects my right side mostly, but I get it in the left too, and my arms too. I really do hate it. This site is a Godsend.

  • My daughter describes hers as a pain in her body like she needs her back to click - she gets it during the day in her arms/neck/shoulder area with legs mainly at night in bed. No one else in the family has suffered from it and did think she could have tourettes at one point due to the jerks she does sometimes

  • There is the back thing again. That is pefect, sayng she "needs to click her back". My MOther reminded me that I go around stretching out my back all thev time, and that is whta it feels like- it needs to click past a certain point and it will get better, but it can take a long time.

  • Now that does sound like RLS. :o) I had thought from your other question that she only had "jerks " in her head and shoulders. BUt, here you did say it bothers her legs, too, so that sounds more like it. You CAN gte it in your arms shoulderd, anywhere. I get mine in my back, arms, legs, shoulders , in between my shoulders. I think that description f your daughter is excellent. I always feel like I have to click something in my body, and if we could just "click" it the right way, that awful feeling would be gone. It is all trial and error with RLS. I hope she has a good doctor because RLS is progressively worse as we age. One reason could be that we produce less Melatonin as we get older, which runs our inner clock.

  • Mine is NOT at all like a shock or pain.

    I get the classic "creepy crawly" feeling, almost like bugs walking on you.

    You just can,t ignore it. You just have to move.

    A few times while tring to ignore it, it was a bug. Go figure!

    Anyway, is usually in legs but can up up into the groin (really bad), nothing to move!

    Rarely in arms, but I hav had it there.

    No pain. Just cannot. Ignore it, must move legs, ok for a few seconds then comes back again.

    I,m usually ok during the day, maybe because I'm always moving.

    It seems to start about 8 pm especially if sitting on couch watching tv.

    In bed i just constantly have to move. Seems to start going away about 4am and can then sleep.

    What works great for me is compression stockings. Sleep like a baby

    If you need more help with the stocking ask via message

  • Mine is not only shock and/or pain, but defintely the urge to move that you cannot ignore no matter how hard you try. Classic RLS when you gotta move! :(

  • only just joined but wanted to add my own explanation. I have two types (one constant and one intermittent). The main one is very much as someone else has described (a great explanation) which is that its like alka-seltzer in the veins and bones, mainly in the legs and less frequently in the arms. I also get about once or twice a week the shocks. Not so much an electric shock but more like when you knock your elbow bone (funny bone), that kind of feeling but both in in legs, arms and even heart area. Always in specific areas of about two inches in length on my calf, thigh and lower arms.

    Stretching helps and pushing my toes against the foot of the bed but oh, to be able to sleep just one night right the way through...

    Selfishly, It's great to finally see I'm not alone in this. I am however concerned that I am reading this is hereditary as I have 2 small children. Are there any stats on genetic links and probability of the kids getting this also?

  • The urge to move my legs around a lot is like trying to hold back

    a very powerful sneeze. I just have to do it.

    My legs have a mind of their own with creepy sensations and strong

    wants. They have a loud presence that overpower anything else.

    It's like a dog who wants out of a cage, a person in the prime of a panic

    attack

  • The feeling starts with discomfort, it grows with stabbing sensation, then pain, then like an electrical circuit and pain.

    By then it cannot be stopped so I have to get up and start getting concentrating mentally in something. It interferes with sleep and change sleep patterns and deteriorates mood.

  • It is not just in my legs but arms and in my stomach.

  • The following text is copied from my answer to the question "What word would you use to describe your pain for RLS ???"

    I would describe the RLS twinges as being like a pulse of electricity surging through which ever part it is surging and with each pulse comes the almost involuntary muscle spasms.

    It is reminiscent to the bodily feeling you get as a child when playing hide and seek and you feel (whilst hiding) excited and fearful at the same time but you have to suppress the excitement in order to keep still and quiet and so remain hidden and in the game. More often than not such circumstances lead to a need for a toilet break. I wonder if anyone else sees this in a similar way?

    Regarding pain I would use the word discomfort because the type of sensation I experience is not painful in the normal sense as when e.g. you hit your thumb with a hammer.

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