I was to see a new neurologist 2weeks ago a 2 hr appt, it was the hardest thing to do stuck in a tiny room my legs at it's worst and he keeps asking me what does it feel like ???? I never have any words for RLS , I can tell you what I'd like to do with my legs but I can't find any words for the pain.
What word would you use to describe y... - Restless Legs Syn...
What word would you use to describe your pain for RLS ???
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Shoeinthree
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64 Replies
•
for me it feels like something gnawing on my bones, and like electric shocks in my legs
torture , hell, same as Antique77 electric shocks going through body maddening urge to move legs,arms, neck
Thank you gypsy49 and antique77 those are awesome words , it's the creepiest feeling no words can hardly describe.
Torture and living hell!
Shoeinthree• in reply to
Your so right torture is a very good word
Thanks swedish
• in reply toShoeinthree
And my legs and arms feels like they are going to explode any second
I agree, torturously excruciating electric shocks travelling down my legs until it explodes, because you can't NOT move. Suppressing it makes it worse. When it is a bad attack, explosion is the only word I have that can be printed! 
Thanks night dancer, It is so hard for someone that doesn't suffer with this to understand us, I always say if you could only feel it for a day just for them to understand,
My daughter has a more understanding about RLS now as she suffered RLS in the last couple so months of pregnancy thankfully it went once baby was born she said she never realised how much i go through im just pleased it went away 
that what i like to hear, family that understand
• in reply togypsy49
My niece has it - she is barely 4 months along. I hope
that your daughter and my niece never feel another day
of RLS. Jen has a long 5 months. She can't even take
a hot bath to settle her legs a little..the doctor told her
hot baths are off limits to pregnant mama's. So funny
because my nieces mother( my sister) gave me such
a hard time about RLS being in my head..and about
taking pills that zonk my brain out.. (her words exactly)
Now she is asking me to find stuff out for her.
gypsy49• in reply to
Thankfully the RLS went about 2 weeks after she had my grandson and hopefully she never gets it again but at least she has more understanding what i go through , i hope your niece RLS goes once she's had her baby i hate the thought of anyone suffering with it , funny how folks change thier opinion about RLS when someone suddenly goes through it at least your sister's views has changed just a shame how it's come about , Good Luck to your Niece Yikes Xx
• in reply togypsy49
Isn't being a grandma the best feeling in the world? = ) I keep telling Jen that it will be so worth it to not take drugs with this rls to have a very healthy baby. That is very hard for me to say to her. I showed Jen what you said..it helped her a little bit. She agreed it will be a long 5 months to try to keep it together.
gypsy49• in reply to
ohhhhhhhh defo Yikes the fact you can hand them back and spoil them rotton without being told off lol i love having my granddaughter here (she's 5) we're very close , totally agree with you on meds whiles expecting but like you very hard to say don't take knowing what your daughter is going through but im sure with your help and understanding she'll get there , 5 months will soon pass and she'll have that tiny bundle in her arms and RLS will soon be a thing of the past i wish her well keep me up dated how she goes Xx
• in reply togypsy49
She's my niece. I told her to join up here and she will find some ladies who have gone before her with pregnancy and rls..I told her how hard it is to tell her not to take anything for RLS..Her mom rubs her back a lot but you know how that goes..they end up making each other mad..because RLS is so
unpredictable. Then she comes over to aunt Karen's to tell her what's wrong..I do love that girl..but she does yell at her mother when RLS is bad.
She's 28 and married for 4 yrs.
Her mother drives and hour each way to come try to help her. They both need this or another forum on RLS.
gypsy49• in reply to
oppsy.... kept saying to myself niece ... and still typed daughter lol sorry bout that , yeah would be a good thing for her to join but then i tried my daughter to join think she got it in her head that if she joined it wouldn't go if you understand what i mean ( can't think of the right word ) , of course Aunt Karen will put her on the right road yeah i can imagine her shouting out of pour frustration bless her ... hard enough expecting without the RLS my daughter found it harder the bigger she got to move when RLS was bad thankfully didn't happen every night/day , yeah im not sure if there's a RLS group on fb for expected mothers would be good if there was as they don't need the whole RLS shoved down hard ( the ins and outs of the whole med thing) just someone chat with when they can't sleep or what works for someone in the same position as them,
• in reply toShoeinthree
Glad I am not the only one who thinks that when people look at me disbelievingly!
Gypsy49 she is so lucky it went away, but isn't it nice to know you can be understood now, I find people with RLS. Who doesn't have pain with the RLS just fluff it off, and it makes me so mad when I hear that. If they could only walk a day in my shoes.
• in reply toShoeinthree
People with RA say that too. Science has found a way to keep
the fingers and typical look in the past but people are really
burning from the inside out with it..They always say that people
get so mad when they park in handicapped spots..the truth is
that they limp, their legs are screaming "Narcotics!" and then people
go and say the meanest things to them. Bless everyone who
understands true disabilities. Not all have a look.
Aye is it nice she understands now Shoeinthree just thankful it went after birth , aye it annoys me when folk think its something you can just brush off with a couple pills and everything is ok hmm i wish but yeah just one day having it to make them understand would be good and longer for them that totally lack in understanding lol
One of the pains I get is between the shoulder blades, it feels like a pointed knife is being twisted in my spine. Sickening is the word.
• in reply to
Have you had a MRI lately and have you looked into facet disease?
RA affects my spine sometimes...that's one of the spots for me.
Facet disease can be seen on a mri only if it's severe..but even
just a little tiny bit of movement of the disks can lay a person flat
with disabling pain..I've seen it in my RA group..they had normal
mri's and ct scans, x-rays and the minute that they had the injection
into the facet, it wiped out pain almost instantly..the block doesn't
last forever..You can have the total block (doesn't affect your limbs)
or you can have a steroid that will soothe it..I've seen both ways.
Unfortunately that's not my problem..I had the steroid injections when
pain lasted very long and was super sharp or dull but extremely
pronounced. It can and does sicken people..many vomit with pain.
Does anything you do help it? Such as laying in a certain position?
Does it respond to pain meds?
• in reply to
Can't have an MRI without losing an arm.
Biofreeze, Atrogel or prescribed gels/creams do take it down for a while.
Oral analgesics don't. I went privately to a chiropractor. Apart from slight mis-alignment no spinal problems.
Deep relaxation helps, but not the lying down on its own.
It's just one more thing on the list. As long as it doesn't get worse I'll live with it.
• in reply to
I had one after my knee replacement. I guess that
I didn't think of that about your plate in the arm.
The mri did nothing to my knee..isn't that strange?
Can you have a ct scan or ultrasound? No one should
have to live like that. Does deep relaxation include
massage or mindset?
• in reply to
CT or ultrasound is OK but I live in the North, a small seaside resort. Out side the M25 we are considered neanderthals ( The M25 is the motorway that rings the London area) of no value. As one member of parliament recently put it when fracking was proposed for the southern counties "Fracking should be confined to the North East, it's all wasteland up there".
I feel a great kinship with the American hillbillys.
• in reply to
Can you not get your doctor to refer you for a CT or ultrasound. ?? Oh dear, i am a southerner, please dont hold it against me. 
• in reply to
I could Elisse but to be honest it's not worth the hassle and I can't put up with any more medical incompetence and shrouded implications that I'm making it up. I had more than a decade of that with gastro problems, even when they found the problem and removed half my intestines they didn't have the courtesy to admit they were wrong. Same again with the RLS, they give me meds but I don't think they believe me. Had eye problems which they called glaucoma and told me to use eye drops for the rest of my life. I think it was a one off intra-ocular pressure event caused by a congenital cataract eruption. After nearly 2 years of arguing with them they agreed to take me off the drops for 2 weeks then re-test. I will let you know next Friday if I am right. My plated arm was done wrong and has caused me pain since I was 18. The list goes on and on. My faith in the medical profession falls just below used car salesmen.
Please, no one suggest that I take action for damages. I really don't want hassle and no amount of money will change that.
• in reply to
You are a good man Sowilo
• in reply to
Oh my, you have certainly gone through to mill with the medical profession, which didnt sound very professional. Sorry to hear that you had to put up with their incompetence. 
Sowilo I've never had RLS even close to my spine, I can't even imagine what you must suffer thru in a day. I've always said I'd like to cut my legs off, but my luck my RLS would go into my arms,
Have a great day !
i get it in my back also its a devil then you cant shake your back around can you
• in reply toCarol456
Sounds absolutely terrible, horror!
• in reply toCarol456
If you mean back pain, indeed. I think that we all just work too hard in our daily tasks.. haha. I have it in my shoulders and arms as I am cutting my RLS meds down a bit. I always want to blame RLS on my back...It always Feels like it's coming from there, yet I have gone to
get my back massaged a couple times and I had to get up and leave during it because it seemed to be irritating me more than it was helpful My legs acted horrible.
Antique, what do you do when it gets in your back? Others who
have it there are always looking for help in getting that settled
down... I have used a heating pad for my shoulder.. the very
best thearpy for me ever was to get into a swimming pool and
walk around in water about breast high. I would then do some
swimming strokes, backstrokes especially to calm it down.. but
it never lasted very long. (the relief) My family joked with me and
said that I should put on an orange lifejacket and sleep in the water.
I honestly do know of an elderly gentleman who does wear a
life jacket to sit in his hot tub. The water goes to his neck when
he sits. The pain relief was so excellent that he did fall asleep.
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 supress 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.
Wow pete1 that's an awesome way to explain it, it's the build up as in hiding in the game and it's a release when you can take your meds as in being caught or winning the game !
I usually don't get any pain. My legs just want to keep moving all night.
They are so uncomfortable. Every once in a while I get a zap of pain
that shoots but by the time I would tell anyone about it, the pain would
be over with.
Yikes consider yourself very lucky, any kind of RLS is enough to deal with but the pain its like a say no words that I can write in here will do.
• in reply toShoeinthree
I do believe you. I have heard others say that RLS can be painful. What I do have to contend with is Rheumatoid Arthritis. I am diet crazy enough to eat well for both conditions and that alone has kept my pain level down quite a bit. I was at one time feeling like the tin man without his oil can (stiffness) and that is what prompted me to see a doctor about 4 yrs ago. I take Simponi as well although I am very late with this last dose. I am trying to free myself from all medications. I do sympathize with you Shoeinthree (what an interesting name) I like it.
I've never been able to find the right word to describe what I feel. What I usually say is that whilst I can't describe the pain I feel as if I want to be stretched and if I could lay my hands on a medieval torture rack I'd gladly invest in one.
Thanks martyrtothecause , I don't know why but you do find some comfort in knowing were not alone in trying to find words to discribe RLS , I've always said I'd love to use those wood clamps for my legs just knowing I could twist that handle and inflict more pain helps my legs so strange and hard for others to understand,
• in reply toShoeinthree
It's not so hard to understand. 4 months ago a woman wrote me
private messages..she was doing self harm...it was her way of
dealing with it. I felt that way just 2 days ago.
• in reply to
WOW, that poor woman, is she not getting the proper help from her doctor.. is she taking anything for her RLS, or is it not working. No one should resort to self harming, that is a first i have heard of anyone doing that...
• in reply to
As Sowilo said, diverting the pain by causing pain elsewhere in the body does help. Have you ever pinched yourself to stop
yourself from laughing or have you ever really bit your tongue to stop yourself from saying something? It is one of the cruelest forms of self-harm and because it works so well,
people cannot stop doing these things..there are treatment centers especially for the youth that cannot stop hurting themselves.. I wish for no one to do such things to themselves and I wonder how they even think to do these things.. some people pull their hair out too...that used to be
so shameful to the person after that they would wear hats, scarves..My heart goes out for anyone who resorts to that
hellish kind of thing..before you reach that point, I hope that you get some help for it..just tell your doctor..he/she has
heard of it before..there is a lot of help out there to stop doing
those things. There are plenty of medicines that can help. =)
everyone learns something new every day of their lives Elisse.
• in reply to
They sure do Yikes.
• in reply to
I found that when I had a bad back for a few days the RLS stopped. Same when I bashed my head on the shed eaves (don't ask) and nearly scalped myself. No RLS until it stopped hurting. That is why, as I said before, I slap myself sometimes. (Only when the RLS really hurts) It does help. Could be why the T.E.N.S machines help some, triggering the same nerve receptors. I'm thinking of building one.
• in reply to
Thank you for speaking on this Sowilo. You are not alone.
Some people start digging on their skin and pick scabs to
relieve the pain...Some distant relative did that in my family.
With my background, she asked me if I knew of something that would stop that. I told her what I am telling you..she did
quit drinking one day for once and for all...she changed over to
self harm..Whatever made her drink like that started making her do these things. She has the number of a treatment center.
• in reply to
Sowilo...you are perfect the way that you are.
Power up that T.E.N.S and try er' out. I
think that you are right..that is how it works..xx
• in reply to
The wife says I can buy a T.E.N.S machine but not build one, which I think is unfair. The things I make or modify only occasionally blow up or catch fire, I did redecorate the bedroom afterwards, and the motion activated lighting I installed throughout the house works perfectly.
• in reply to
LOL.....
• in reply to
ahaha..you are very likeable. what a character! =) I'm going to tread carefully when asking this...IF a friend came to you with the same exact pain that you have, would you advise them to look to marijuana to treat it? Push the legal side away when you answer.
• in reply to
Honestly, no. Unless prescribed by a medical professional. All illegal drugs are of unknown quality and can be lethal. That goes for varieties if marijuana such as skunk.
If you really want to try marijuana hop a plane to Amsterdam where you can legally buy and use it in the cafes where it is regulated. (Don't try to take any home)
I smoked it in the 70s, only the resin works on me and at that no more than a glass of whiskey would. My kick was lsd occasionally, it expands the mind.
=O you were a little daredevil...lsd..haha..
I don't want to just yet..I have thought it to be
safer than the dopamine pills that I take.
I would hop on a plane to a state near by you that allows medical marijuana, probably cheaper than going to Amsterdam.
I meant for Yikes.... lol, so which way are we going across the pond or where the daffodils grow. Short ride or long haul...!!
Carol456• in reply to
spoilsport !!! grrr though we were going tripping
spike28• in reply to
you rotter, we are going by boat, as per usuall, and we are going tripping antique77 never mind Elisse, shes on the oars anyway 
Sounds like you two have been tripping already, without me. Well, if i am on the oars, dont blame me if we just go round in circles....!!
I think the only trip i am taking right now, is to my bed...
• in reply to
NOoo..I would have quite the plane ride to get to the states
that allow it..may as well go all out and fly to Amsterdam..I
read enough about the area, saw some videos and would
love to pick you ladies and gentlemen up on my way to. =)
Bed sounds wonderful Elisse. My brand new granddaughter
was with me for the past 3 hours. I forgot how much work
an infant is..I had to change her 4 times...but she ate wonderful.
I'm so proud of my daughter for adopting her..She healed us
from the loss of my Grandson almost a year ago. =)))
• in reply to
I talk so much that I'm even replying to myself...haha.
No RLS yet. The signs are there but it didn't start up
yet. I'm going out on a hot date with the hubby so
it better not kick in on me. We are going to the theater
to see a live musical...(I will try to keep him awake)
=))
spike28• in reply to
lol Yikes
When non sufferers ask me why I dont just keep my legs still I tell them its like trying to stop a sneeze halfway through impossible!
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