WHAT IS/ARE THE CAUSE(es) OF RLS ?

Those of us who unfortunately have or been diagnosed with RLS have all seen or heard the various 'causes' that have been suggested for this condition.

I was wondering if all of us could look back on our medical history, and see if we can determine the following to see if there is any commonality that arises, and perhaps see if there are any determing factors.

Me for instance;

a..Major op in 1984, RLS started soon after

b..Iron/Potassium levels checked..OK

c..36 years old when RLS commenced.

d..Chocolate and coffee makes my RLS worse.

e..RLS starts approx half an hour into sleep.

f...If I do say, a whole day in the garden and I'm really tired, I know the rls will kick in, so I take extra meds. It works.

g..My RLS takes the form of extreme aching in the legs, arms, and neck, some times individually in these areas, sometimes all together. I stretch my legs and arms to ease the pain, sometimes it has been so bad that I have stretched to the extent that I have damaged muscle tissue. Sometime the strectching works, most of the time it does not.

These are the pointers I suggest we take a good look at,and see what comes up.

So....what does everyone think about this? :-)

80 Replies

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  • hi Darcy, well for me its

    no major ops, just appendix

    iron levels allways very low, even with pills!!

    rls from 19 years old

    foods dont trigger mine, plus i drink a little and this doesnt seem to be

    a problem for me

    rls starts beore sleep and during

    if i over do the work thing, that sets rld of....badly

    my rls is painfull, it starts a pulling burning sensation, and sometimes, feels like my toes and feet are in a vice !!, and i get a feeling like electric shocks in my legs, i cannot stand and keep still at all, i cant stay at my p/c and type !!, also mine is inherited from my mum and my son has it now

    hope this helps.

    jean

    oh yes, the stretching doesnt do a thing for me, once rls starts, it doesnt stop until it wants to, i also get a lot of cramp in my legs in the mornings dont know if thats connected

  • Thanks niah, you're the first;-)

    How long before sleep does it start?

  • hi Drarcy, well if i take my mirapexin around 10.30-11.00, i can sleep fine, but if i overdo things, then it will start no matter what i do, and on the odd occasion, it will just start for no reason i can think of, just because it can!!. Also, if im stressed or worrying it will kick of really badly, so i cant really say that one thing or the other will start it,

    As Irene said below, nothing causes it really we are just unlucky enough to have it.

    My mum had it, and out of 5 children i was the only one to get RLS, i have one child and he has it also, we are waiting and hoping not to see his children start showing signs of it.

    jean

  • What most of what you have listed are triggers for RLS, not causes...no one really knows what causes RLS. . Some people have underlying conditions which when treated can find the RLS disappears.

    If you have inherited the gene from your mother or father or even grandparents then you have a good chance of getting RLS as it runs in families.

    They seem to think that something triggers the gene off and low and behold you got RLS.

    My father had it, i have a brother who has it, i have it, but i had a brother who didnt have it....

    What triggered it off in them, i havent a clue...and i dont really know what set mine off...altho i had major surgery when i was a child, but didnt show any RLS symptoms until my teens...maybe delayed reaction...who knows...!!!

  • Yes Elisse, this we know, what I'm trying to get to the bottom of, as I said above , I was suggesting we try to see if there is a commonality in everyones' symptoms, then we can start over again if we find one.

    As far as Genetics are concerned, no one in my mother's or father's family had RLS, neither my wife's family, nor our chidren, only me. That is why I think for instance that in my case, it was the surgery/proc edures/drugs that were a causal effect of my RLS. A ot of the drugs i was given were coma , and paralysis inducing, which I think does something to the dopamine receptors in the brain (my theory only!)

    niah has stated that tiredness affects her RLS, and strain also, why, dopamine is the answer everytime, but why is the point I am trying to make.

  • Alot of us find we have the same triggers, alot have different triggers. Thats what is so complicated with this condition.

    Its the actual cause of RLS, that needs to be found, then they can work on that and find the cure..

  • AND IT DOESNT LOOK AS IF THE CURE WILL BE FOUND IN MY LIFETIME, SO IM JUST KEEPING MY FINGERS CROSSED THAT MY GRANDKIDS DONT SUFFER FROM IT.

  • I'm pretty sure I've inherited it as my mum has it although it's not as serious as mine. I think her mum might have had it too. Both of them however had/has rheumatoid arthritis which I have heard can go along with RLS. I don't have a trace of that though so maybe I've got a double dose of RLS instead.

    I've had symptoms for as long as I can remember although they were intermittent and only came on if I was very tired until about 10 years ago when it started to be every night.Apart from having my appendix out when I was 13 I've always been very healthy.

    As to what sets it off now. I do drink coffee but I didn't for many years and only started again about 6 months ago. I don't drink alcohol at all ( well rarely, I'm not teetotal, i just don't particularly like it.)

    If I don't do enough exercise during the day it can get very bad but the same also applies if I do a lot of exercise.

    I feel like it's just something I've got and nothing I can do or have done makes it any better or worse. I've just been unlucky.

    On the other hand, it comes on as soon as I start to relax in the evening but once I'm asleep then I'm OK which doesn't seem to be typical.

    I don't think I've helped any here. I'm just lucky that at the moment the meds still work. I take clonazepam and gabapentin. I tried Requip but it had no effect.

  • Same triggers magggzzz, as everyone else so far, tiredness, and lack of exercise, all dopamine related. (Yes I know the docs know this, but..they only know that the drugs they prescribe affect dopamine levels, not why the dopmine levels are affected in the first place). They will look in the book for RLS and see what drugs to give and what levels to start at, bladee de bladee blah)

    Lets' see if we can be positive, and comeup with something ourselves, that is unless...........someones' got a better idea? :-)

  • Not everyone who takes the dopamine drugs find they work for them.

    Some find the strong pain killers work on the RLS. like Tramadol, codeine....or Gapapentin etc.

    Its just that the dopamine drugs are the first in line to try for RLS, and the ones that have been approved to use.

    I hate to be a party pooper, but you could go nuts trying to work it out.

    Niah, is right just because no one in your family has or had RLS, they might have had it mildy and just carried on with it.

    Or, someone in your family could have had or have the gene and passed it on without them actually having RLS themselves.

    It can even jump generations.

    Lack of exercise or doing excerise doesnt matter to mine, if it wants to play up it will regardles..

    Sugar, caffeine, chocolate , none of those seem to make mine worse, but for some they are definately a no no..

  • as for the exercise thing, if i do to much, i get an attack of RLS, and then if i dont do much i can still get an attack, so go figure that out, i cant :).

    Darcy, for all you know someone in your family could have had it, but not known what it was. years ago maybe ?

    I dont stress about what causes it, i just wish we didnt have it, and if the experts cant find the definate cause, and then a cure, then i dont hold out much hope of myself working it out, but its still good to have all the input from other sufferers, and someone to talk to that doesnt ridicule this horrid illness. and im not being negative Darcy, just had it so long now, and cant find out what causes it or cures it

    jean

  • That's good to hear, negativity is a no-no! It's our 'disease' let's bite the bugger back if we can!!!!!!!!!!!!!

  • nice one Darcy ;) !!!!

  • Hi Darcy :)

    Mine started when i was 8yrs old can't think of anything that triggered mine off at that age no one else in the family has it i have it all the time no sooner i sit down im up day or night having it in both arms and legs , don't know about anyone else but have nights where the whole body hurts like you've got 10times flu without the chills even eyelids hurt even to walk bloody hurts , Like Niah said to much exercise makes it worst not enough makes it worst im sure there's a fine line but finding it is near on impossible ,Food ,drink doesn't alter it have found stress aggravate it usually that happens when your tired and really want to sleep then get annoyed with yourself , what i do find if i don't sleep a whole night im extreamly hyperactive the following day friends think my body runs on adrenalin or goes on auto pilot,

    I gave up years ago thinking what may or may not cause it writing list down going through everything i eat drink worrying about it only makes it worst,

    It's who we are becomes part of us like anything else as sad as it may be ,

    one day they may find a cure who knows but to find a cure they have to find out what causes it ,

    Like you said lets bite the bugger back and show whos boss lol ..

    always wear a smile :) can't let it get you down or it wins

    XxX sal :)

  • High Gypsy, long time no speak :-) so to speak!

    Stress, now there's another factor that affects dopamine, and over tiredness has a great effect on me as well.

    Commonality...again?.

  • hey...Darcy :o) has been a while, That only happens when i haven't slept for days like anyone you'd get stressed , night after night go to bed just start nodding then wham........... your up then up again try again do that few times a night stressed ... , im trying ti figure out why it happens in the day too seem no rest to be had :( just been reading down about the broken back and the whats it of the spinal cord i've never hurt my back but strangly 8 out 10 times my rls starts in the back if it's goign to effect both arms and legs ,

    wonder does anyone has a tell tail sign that there're going to be in for a bad night mines usually itching all over start scratting ,

    you take care Darcy and keep smiling :) X

  • I think I understand your question and its a good one.I have been given my adolescent doctor's records lately for the hope of maybe finding a link.

    My symptoms reflect yours, I even think I hurt my knee stretching last night.

    Medical History.

    I take medications for high blood pressure, cholesterol, requip 4mgs. and pain medications.

    Father died of parkinsons, did not have RLS.

    Inoculations. Dipheria, Wooping Cough, Tetanus Toxiod, Small Pox and Lederlis Tri-Immureal?(can barely read this one)

    Past Illnesses. German Measles, Measles, Mumps, Chicken Pox and Mono.

    Body Damages. Broken wrist, broken collarbone, broken fibula, torn ankle tendon(repaired), two scopes to right ankle to remove trash and need another.Urinary tract infections and colon polops. Arthritis setting in.

    I have had a MRI to see if there was a pinch nerve and iron blood tests which are always fine.

    I try to read studies by K.A. Ekbom and J.D. Spillane who has done clinical studies that seem to get close.The biggest problem is funding for RLS study. Most findings are done by studying other diseases such as parkinson's and pulmonary diseases and RLS gets in the picture. I have yet to see a sole RLS study.

    Can you see any common ground that links to RLS?

  • There are, and have been sole RLS studies. Some of them might be shorter or smaller studies, but they have done studies that just have to do with RLS.

    Check out the RLS foundation page, and there is a page with links on there to all kinds of things. I will honestly say that at least half the links on that page are dead, or"unable to retrieve", but there is some good stuff on there. For Mirapex, Requip and Horizant to be approved for RLS, they did studies just for RLS for the FDA. (US)

  • Do you remember the Australian one, where they gave RLS people a MRI scan, which showed people with RLS, had a difference in the movement part of the brain from "normal" people's brains...

  • Folks

    Seems that I had it since I was a child, I was constantly being told to sit still and I just couldn't! I remember trying to learn to meditate and I could not still still and kept disturbing the class! So 54 now , I may have had RLS for 40+ years?

    Caffeine always makes my RLS worse, so I avoid that. Foods nothing I have noticed so far. Exercise can make it worse, stretching does nothing but I still find it hard not to try stretching or pacing or jumping.

    I can get it any time of the day but most common from mid-afternoon onwards. I can get into bed and be up again within a hour.

    Its in my legs, ankles, toes, arms, shoulders and lower back sometimes at the same time sometimes separate attacks. And the kicks are so very powerful they wake me and knock tables etc over!! And of course it developed into the painful version of RLS, sometimes like a cramp, sometimes like a blade.

    Sitting on my Swiss ball provides some relief, making love the same, meds are the best long term option and boy do I take a lot of meds.

    None of my family up or down the line have any symptoms.

    So none of use seem to have exactly the same history or present? What can we do? Or is it just our own personal hell?

    Kindest

    Bob M

  • Caffeine is a common causal effect BobM, I notice you mention making Love, that's a big dopamine flow! replacing what you lack?

    Come to mention it, your'e right there :-)

    Also you mention going to bed, and being up within the hour, me too, see my points.

    Commanality again here.

    So any explanation so far anyone?

  • I don't know. I have been doing what you are doing now, Darcy for the last 15 yrs-looking for anything that could be the common cause. back when I was REALLY into the reasearch , I had spread sheets, did polls in my groups, compared all the answers over and over. All I can say is good luck. Yes, we are all going to have the commonality of getting up and moving. that is what RLS is, basically. Triggers are easy to find-causes are not. :o)

  • There are symptoms and causes, you can't have one without the other, shuffle the numbers to get what your'e looking for, find it, then forget it and start again because that was too easy.

    You have to do EVERY possible equation, you may or may not find the answer, if not, you did the best you could.

    I' not saying I will come up with something, but i will write a programme for my other computer to make life that bit easier!! ;-)

  • Well, I can give you my opinion. People who have been in my support groups for over 15 yrs, and 29 different countries,over 2,000 members between groups, and we have been working on this very question for 15 yrs. Certainly there are commonalities wth everyone who has RLS. BUT, IMHO, dopamine may bethe culprit in only some cases.

    Primary RLS is inherited, so the cause is elusive, because so many people are triggered by different things. It is not easy, because some people can take dopamine agonists and it is their "magic" med. Others canot tolerate dopamine agonists, like myself, and they never made my RLS feel better. My RLS started when I was 14 after I broke my back. One thing to know is that in sleep study results, people with RLS and PLMD register" excitability" in the spinal chord fluid, and this ONLY happens to people with RLS, so that is one big common thing. People without sleep disorders showed no, or very little excitability. That is what I am concentrating on, because it totally makes sense, since RLS is neurological. So, like I said there is Primary RLS (genetic) and then secondary RLS, which is what you seem to be concentrating on, Darcy. Secondary RLS can be caused by a medication, underlying causes like low ferritin, etc. Sometimes when these things are fixed the symptoms get better, but that is a few lucky people. I had iron infusions and that did not help me either. it is all so individual, if I have learned nothing over the last 15 yrs of moderating support groups,, what works for one, does not necessarily work for the next one, and as far as finding a cause, there are still a hundred directions to go before that happens. Me, both my sisters, both my nieces kids, and my niece's husband all have RLS. Neither of my parents did or do ( Mom is still here) but they must have passed the gene down to the rest of us to share. It is awful watching a 5 yr old and a 7 yr old with RLS.

    I have folders and lists and files crossreferencing things like triggers, meds, etc. It is not an easy question to answer, and is one I have dealt with forever with my groups, and after 15 yrs, we certainly have helped educate each other, but some days I just feel like we have gotten nowhere in the understanding dept. when it comes to the general public and half the medical profession who just will not deal wth RLS, nor do they want to learn. I am generalizing, but the last few days, I have heard some really dumb things. :o)

    You will never find a paper or study that says surgery can "kick up" RLS, but lots of doctors ARE listening to that idea, since there are more and more stories about it. so, we need to push someone to do a study for Surgery and RLS. Dr. B says there are no studies, but lots of patient stories about surgery and RLS. I KNOW that is when my started, after the broken back and after the surgeries, plus 3 neck surgeries over the years. But, that is me. :o)

  • Btw nightdancer, "excitabiity" in the spinal cord, got any more info on that?

  • will find that for you. Not sure if the files on those studies are on this computer or the other one. Will try and find that if I have time today.

  • Agree wholeheartdly nightdancer. As I said though, I was looking for commonality whether primary or secondary.

    Interesting to note though:

    Quote: {my RLS started when I was 14 after I broke my back} Unquote

    Commonality ? (See my point re ops etc)

    I didn't break my back, I got shot, (Occupational Hazard in the Paras!)

  • But, there are lots of people who have not had spinal trauma or surgeries that have RLS.

  • Sure, but...you and I both had our RLS start after major Trauma.

  • I will try and answer everyone, seeing as I started this off!

    Hope no-one minds me doing this? :-(

  • Just one point I'd like to mention. When I was a youngster, 10ish, my legs used to hurt and my mother used to say they were growing pains. I now know that growing doesn't hurt and feel that the pain was the precurser to RSL which my mother had also my two sisters have and my daughters are starting with :(

  • Not the first time I've heard that daisyw.

    Genetic it would appear

  • To this day, doctors diganose kids with growing pains. And, there are actual pains that are growing pains when we are younger. So, doctors just assume "growing pains" even now. Ridiculous, because there is a big difference between growing pains and RLS, but some doctors do not wnat to take the time to find out. One thing that is always confusing is how to describe what RLS feels like, and when dealing with a child it is way worse, because if we can't adequately describe our RLS, how do we think kids are going to do that?

  • Growing pains is common to me - I had bad 'growing pains' from being very young and as far as I can remember my RLS started in late teens

  • Hi Darcy

    I've had RLS since I was a baby. It was worse when I was a child, as it affected me every day, during the day as well as at nighttime. I didn't drink alcohol or caffeine then (obviously) so they weren't triggers.

    I've had a lifetime of this condition and for me I've noticed the trigger is mostly stress, although sometimes it can start when I'm sitting to watch TV and I'm not conscious of feeling stressed.

    As the years have gone by I don't suffer from it anything like as bad as I used to, and it seems to follow my monthly cycle so seems to be worse when I'm pre-menstrual, again something which I believe has a link to stress/body hormones.

    For me the sensation isn't painful, but like an internal itching in my upper legs. Unfortunately my son seems to have inherited it. He's 9 and I think he's been suffering from it for at least a year now. I don't know of anyone else in my family who has it, but there must have been someone I inherited it from. Not had any kind of serious op, and as I said I was born with the condition anyway.

    I think Nightdancer's reference to "excitability in the spinal cord" sounds very interesting and I'd like to hear more about that.

    Sorry not to be of much use!

  • Hi MumofSam,

    On the contrary, any information is very useful. It seems yours is inherited, and your son's. The triggers you mentioned would appear at this moment in time to follow your monthly cycle, which means that certain hormonal and other chemical changes play a part in triggering your RLS. I'm not a doctor i hasten to add,but I'm sure if you loooked on the net for changes in hormones, and dopamine during your cycle , you may come up with something that could possibly explain this triggering.

    regarding stress, that's another dopamine change, and sitting down, well....that I cannot answer, because I think most of us get it when we are inactive for a bit.

  • I have had RLS since childhood (mine is hereditary) and don't know of anything that kicked it off. My parents used to say it was just growing pains. Coffee alcohol and smoking make it worse. Mine now happens in daytime though up until about 15 yrs ago i did have problems on a night sleeping because of it. Like you i find if i have done a lot of walking during the day or decorating then as soon as i sit down it will start to kick in. I find funny enough that sometimes walking around can help a bit especially if in bare feet on a cold floor. The damper the weather the more i suffer so have come to hate our winters. Stress is another trigger like others i suffer more if i am stressed out by something. Hope this helps your 'research' and i hope you will also publish any common factors you come up with when you finish getting all your answers. It would be interesting to see what comes out of it.

  • Hi Avosyl,

    Heriditary (Primary) RLS is of course a common factor.

    Coffe is a common factor in your case as is your symptoms after a lot of work/exercise. Also stress rears it's ugly head again.

    It's the first time I've heard of damp weather as a trigger, maybe it's allied to the causes of Rheaumatoid Arthritis (which I have)?

    Walking barefoot on the cold floor is again a new one, but I can see where your'e coming from. It's a pleasurable experience, which in turn is a dopamine trigger.

  • Hi Darcy, alot of people find walking on cold floors helps to relief their RLS, I sleep with my feet out of the bed and have a floor fan at the bottom of my bed focused on my feet and legs, its on all night. I prefer the coolness in my bedroom and on my feet and legs. Heat, makes mine worse, summer months are always the worst. But in the winter, even tho i still have my fan blowing away, i use a heat pad on my lower back, that helps too...So cold and heat all at the same time, figure that one out....lol..

  • Both are relaxants in their own way, therefore causing dopamine to be released into the system.

    I can see where the hot an cold treatments are coming from, as you can see, it's commonality again.

    Who needs chemical interference when we have all these useful remedies!!!!!!!!!!?????????? :-)

  • But Darcy, the remedies are only temperary in bringing relief, they dont replace the meds. just help out when even the medication doesnt work and fails sometimes at night...

    If you have RLS mildy then the remedies can help for some people...

  • Of course Elisse, that was tounge in cheek on my part! :-)

  • Oh, ok, i thought you were being serious,.. :)

  • No probs, I wish it were that simple!:-)

  • Hi there - as I have just replied to another question on this site, I have been suffering unbearable RLS after stopping taking Tramadol after leg surgery. I broke my leg 4 months ago. After reading these other replies does anyone think that RLS could be caused by withdrawal from painkillers administered to you after surgery?

    I have had RLS since I was a child - not that often and nowhere near as bad as this last episode. I couldn't sleep for 5 days, until I went back on the Tramadol in order to taper it off over 6 weeks. I am now quite scared about the prospect.

    Brokenleg

  • Hi brokenleg, interesting theory, seems those that have had surgery of some sort seem to to be the ones that get onset of RLS after.

    I'll investigate!!

  • There, I was wondering of you had had RLS before the broken leg, so that answers that question. Did you have NO RLS while you were on Tramadol, especially with a broken leg. Your theory holds a lot of merit. So hard to tell what is going on with any of us, after after a certain point it turns into a vicious cycle. But, RLS gets worse as you get older, and your broken leg could have triggered the gene with a strong signal, but that is theorizing, also. RLS IS genetic for about half the cases. Tramadol does work wonders for RLS for some of us. Just know that RLS does not go away, even though it may "hide" once in a while. We can use our own coping tricks which we make up as we go along, plus eventually meds. Some people never get it bad enough to need meds, while others of us need them 24/7. It is like any other disease. Some people have it worse than others, and we may never know why, but we will keep asking questions and looking while we cope with this sometimes torturous disease. Simulating RLS would be an effective torture tool. :o)

  • Hi. No - I don't think I have RLS at all on the Tramadol - only when I come off it, but I had thought that the broken leg could have triggered something off. When I was taking co-codamol, before the Tram, I had quite a few myclonic jerks at night which were like someone giving me ECT. Very horrible. I mentioned it to the docs and physios - but no-one made any comments - as if I was making it up. It wasn't til very recently that I found out what they were. I don't think I have had any since being on Tramadol. My mother has a related condition. I will ask her about it tomorrow.

    Eeeek. Does this mean I will have to be on Trams all my life if only 1 a day? And is it possible to be? It certainly is torture.

    I am 60 by the way, and female.

  • 1 tramadol a day for peace in your legs is a small price to pay, if any, for sleep and in able to sit still. Your leg could have trigered RLS. I know my back diud when I broke it at 14.

    If you can squash the RLS with one Tramadol, then I would say you are very lucky. :o) I have to take 6 different meds just to keep my RLS under any kind of control and so I can function. Tramadol has waaaaaay less side effects than the "official" RLS meds, that is for sure. So, if it ain't broke don't fix it, unless it's your leg. :o) RLS does not go away, just goes quiet, and the Tramadol is most likely helping with that. I used to be able to take one Tramadol years ago, but RLS is progressive. I am not saying everyone gets the really SEVERE RLS, but the ones that do, need the meds for quality of life. Sleep deprivation kills. 1 tramadol a day will not. I just turned 56 and am female. I should just start signing my name. lol

    Oh, and anyone can private msg me on FB, if you need to ask about support groups that are available, physical ones and ones online. I am in the US, just to be clear with that. have a good Sunday!

    Donna Mc

  • well this gonna be confusing for all of you. No one in my family has ever had RLS. It started when i was 18 ish but has only really just kicked in. Mine is every night without fail and no matter what medication I take it never goes away. I am itchy all over during the day and then at night I am a jumping bean. No doctor will listen to me. The doctor who diagnosed me said that it sounded like RLS but it could be anything, so try these meds and see what it does. Starting to get really annoyed with my RLS, feel like tearing my hair out some nights. Dont know what to do :( oh and coincidentally i had a hip arthroscopy when i was about 18... ? leah xx

  • Hi leahk

    18 eh! Sounds like a lot of hormonal flying around at that age.

    I would be interesting to know at what age it 'kicked in', it's a shame you not having any luck with the GP's, the only thing I can suggest is keep changing your GP until you find one that is sympathetic to yor needs.

    btw: what meds are you taking?

  • just a little comment-RLS is not always genetic. there is primay RLS and secondary RLS. Primary is inherited; the secondary RLS is almost always caused or triggered by some disease, injury, or medication. So, not confusing as far as that goes. What meds have you tried? As you can see on here, the doctors do not always prescribe what should be prescribed.

    And, as always, watch out for over the counter meds that can "kick it in". :o)

    You said RLS started when you were 18, so how long have you been fighting the battle and what meds have you tried? It would help to know a few more details. Just knowing what meds you have tried is a huge first step in figuring things out. some people say, "Oh, I have tried everything", and it turns out they have not, so it is very helpful for us to know.

    Donna Mc

  • None of the RLS approved meds work for me either, and that is not uncommon. Opiate pain medications are prescribed for my chronic pain, and they are the only meds that will keep my legs quiet. I have literally tried every med on and off the approved list, except the patch. I will not be trying that, since no other dopamine agonists work for me in the least, ever, unfortunately.

  • If you have all the criteria for RLS, then thats what you have. If your legs jump at night and stops you sleeping and you HAVE to get up and pace to get relief, if you rest and your legs want to move, if you are asleep and your legs and the sensations which go with it wake you up and you have yo get up and pace then you have RLS. Maybe the medication your doctor gave you isnt suitable for you and isnt working...

    Someone in your family could be carrying the gene and just passed it on to you, without them having RLS themselves.. The hip arthroscopy may have trigger your gene and started the RLS off....just guessing on that one..

  • hi, my doctor will only give me requip (ropinirole). Im 21 now and it has just generally been getting worse until now. I know that RLS comes in two kinds, i was only mentioning it because nearly everyone on here has said that their family has it. No one in mine has ever had it, which makes things even more harder as they believe that it is all in my head. If i stop thinking about it then it will go away. Tried explaining that im not thinking about it when im asleep and i still need to move around. Luckily my bf is very understanding and even holds my legs down when they start continuously jumping around the bed. I find doing this can calm it down for about 15 minutes until i can fall asleep. Im also currently on amitriptyline for depression. My doctor doesnt believe that amitriptyline does anything to RLS. Apparently it is a mental illness and not the dopamine levels etc....

  • If ANY doctor even gave me the feeling that he/she thought it was all in my head, I would never return there. Period. I have "fired" many doctors. I think you need to move on from a GP to a neurologist or a sleep doctor. And, I would like to just say, for me, if anyone even tried to hold my legs down, they would not live through that experience. For most people, that would be a nightmare to have their legs held down. I even have it in my living will and health care directive that if I am in bed "no restraints are to be used unless I am properly medicated at the time. Lots of people have the "no restraint" clause listed because that would be our worst nightmare. So, it shows how different we all can be from case to case. Your doctor is soooooooooooo wrong about Amitryptiline. Please look on rlshelp.org on the treatmenet page. That and SSRI's are 99% most likely to make your RLS worse. There are always exceptions, but it does not sound like your doctor is listening to you at ALL. I saw my doctor today and we were talking about how some doctors will not admit when they do not know something and refer you to someone who does know. I told her I appreciate her when she says that she is not sure about something, as lots of docs will not. Saves a lot of time and pain and aggravation once you find the right doctor who will work with you. Your doctor should at least be aware that there are more meds than Requip out there approved for RLS. Mirapex, Horizant, and the Neupro patch(available July 1st) in the US. So, there is more than one option that your doctor could at least try. There are many suggestions for off label treatments for RLS, too, like Neurontin, opiate pain meds (only thing that works on me). He should know that what works for one does not always work for everyone, with RLS, or other conditions. If it were true that one thing worked for everyone, we would all not be in such a mess and we would have no need for our support groups and so much help from other sufferers. I would definitely be looking around for another doctor. Sleep deprivation is very serious and can lead to all kinds of other issues, so I would make sure that my doctor had some knowledge of that, at least. Sometimes we have to get a little agressive when we are dealing with our own health. It IS our OWN health.

  • Yor GP needs re-educating Leah!! Get him to google RLS or Ekboms Syndrome, his learning curve will rise sharply.

    Try and re-educate the family as well, that will help i'm sure, get then to look on this site, they will soon learn it's not in the head.

    How much (dosage ) of Ropinerole are you taking?

  • Im only on the standard dosage of ropinirole 1 a day. Im supposed to put it up to 2x a day but im scared of the side effects. Ropinirole can make me drowsy and dizzy

  • Hi again Leah, Ropinerole side effects are nothing to worry about, the drowsiness etc should disappear once you start taking it regularly.

    As an aside, this is one of the most common causes of the re-appearanc of RLS, people start taking a course of treatment, the side effects kick in, they stop, or go the GP and as for something different. I urge everyone who has been prescribed a course of drugs to stick with it.

    What do you want...Feeling dizzy, drowsy, and a bit icky, or....RLS?

  • Hi Darcy. It's just difficult to remember that when I am falling on the floor because im dizzy or my legs have given away. Im new to this 'disease' and I am already fed up with it. Just don't know what to try. What home remedies would people suggest??

  • sometimes the side effects do not go away, and many people cannot take these meds. I literally lost 30 lbs waiting for the side effects to go away. for a LOT of people, the dopamine agonists do not do the trick, which is a common thread here.

    I was feeling more than a bot icky, and still had RLS anyway, so it did not work for me personally.

  • I agree, sometimes the side effects do NOT go away, i should know, i have tried all the meds. and tried to stick with them but couldnt.

    What we want, is to sleep and still have a life during the day. Otherwise, whats the point...!

  • May I ask why you are being prescribed the Amitryptiline? Putting the Requip up most likely would not be necessary if the Ami was dropped for someting else that will not "buzz" your legs. If you can tolearte 1 mg, you will be able to tolerate 2 mgs. Daytime dizziness and drowsiness is the most comon side effect, so it is all trial and error. And, if you get the dose of Requip too high, it can augment on you, and actually make your symptoms worse after a time on it. All dopamine agonists can do that. We often say it is all trial and error when it comes to finding the right med, the right dose, and the right doctor.

  • Hi Darcy

    mine started when I was about 8 on a long coach journey...well thats the earliest i can remember and it is strong in my memory. I`m 54 now, female and dont know of anyone else in my family with it.

    Its got worse with age..mainly at night but occasionally in the day. I get "Hangover " feelings of rls the next day, it seems to leave an ache in certain points in my feet and thigh and pelvis area. i feel they could be trigger points

    I have found no connection with caffeine, alcohol, awakeness, tiredness, but my gut tells me its worse when I am stressed.

    I`ve been reading about the gating mechanism for going to sleep and how 5htp can help, so Im giving that a try

    I saw a "brain guy" about 14 years ago and he explained it a bit like that , messages in your brain getting confused, so its made me think of the serotonin/dopamine/stress meltdown (which I seem to be suffering from and the RLS is worse than ever) stuff. Hope this helps your research and I`ll answer any more questions you have ....have a good day..this is so good being able to talk and get it out to people who know x x x

  • oh and exercise doesnt help..if the rls is active when i start running or cycling, i dont notice it but its still there when i stop!

  • Hi Dragon:-)

    Thanks for the reply. It seems that stress again is a common factor. You are sooo lucky that caffiene etc has no effect. I know exactly what you mean re the "Hangover Effect", I get the same as well, just a dull ache in the arms and legs. As far as I know, there is no other way to get to sleep without the RLS kicking in after about half an hour. Could be wrong there, no doubt someone will put me right if I am!!

  • What do you mean "there is no other way to get to sleep without the RLS kicking in in about a hlf hr". It is possible with the right meds and sleep hygiene to not have RLS every night after you are in bed. Before I was on meds, I did have that every night. After I got "educated" and learned what I was dealing with, and got it all straight, it took 15 yrs to get to that point. I rarely get RLS that soon after I go to bed. But I do not lay down until I am almost asleep on my feet, and then hit the bed. So, I am one person who has it severely, and before I figured out what RLS is, did have it every night a half hr I hit the bed, but not any more. I can at least get to sleep, and then mine pops up at 2 a.m., and that is when it is the worst; when I wake up with it. RLS can change it's pattern a lot over the years.

  • nightdancer;

    quote:- It is possible with the right meds and sleep hygiene etc-;unquote.

    Sure, for you perhaps, if so lucky you, but.....come on! Surely you can't speak for everyone.

    Your routine and sleep hygiene has obviousy worked and you have come to manage RLS over a long eriod of time.

    I would say at least 70% of comments on this forum are from people who have had RLS recently (In the last 3 years or so) therefore the comment I made was directed at them. :-)

  • all I was saying that it is "possible". I never said I was speaking for everyone, am telling what I have experienced myself with RLS, plus managing my support groups. I get new RLSer's every day, too, at the beginning of their RLS journey, so I know by the questions askked here that most people that are finding this site really need a lot of help attacking RLS. I never said I never have RLS. I still get bad nights, but I am on the best meds possible for ME. I am just trying to show people that yes, it is hard to deal with, but it is possible, but definitely not always possible. It is just that some do not always get RLS a half hr after they lay down, so I was commenting on that point. I am simply trying to express that RLS can act very differently in different people, but that urge to move is always there, even if it is just a little "buzz" under the skin at times. I am just saying that that the half hr window does not apply to everyone. :o)

  • Darcy, most of the people on here are still feeling their way on what is the best medication for them to use to get the relief from RLS. It can take along time, going through all the meds until you find one that suits. Some will find one med, that works for them, they dont have any side effects and can get on with their lives. That is possible for alot of people, they are the ones who are not in need of a support group. People who we will never hear from.

    I do get to sleep straight away when i go to bed, as long as my meds. are working that night, and when they are working properly i can sleep all night.

    And using coping technics which alot of people have mentioned on here, gets us through.

    There is no cure and so we have to find a way to take control in whatever we find that works for us as individuals.

  • I agree Elisse. everyone is different, we can only suggest solutions, based on "Our Experience", I have put that in inverted comma's 'cos that's what it is, individual experience suggesting a solution, nothing else, unless you have read a lot on RLS of course! :-)

  • I am always reading up on RLS, looking for the latest info.

  • well ive know that i have RLS for 44 years and counting, and im still feeling my way, it seems as if, you find a med and it works, then a few months later, your back to square one, and as for coping techneques (sp) well i think thats all down to the individual really, but we can all help each other, by telling them ouir ways of coping, I think the only real cominality with RLS, is that its a pain in the butt, with a mind of its own,

    jean

  • sorry for the typos, bad headache day!!

  • It is nothing but a big merry go round that is not so merry.

  • You are right niah177, it is a pain in the butt and does attack us whatever we do or dont do...

    And another commonality is all on here have RLS...lol. The only one that applies to all of us...

  • to true ellise to true, hope your days free of the beast today

  • I have recently upped my dose of ropinirole as requested by the doctor. However it has been a week on this dose but my nausea side effect only happens some nights and not others. Is this wierd? Don't think my ropinirole is doing anything but im not sure if it has delayed reaction?

  • by "delayed reaction" do you mean you have to build it up in your system to the therapeutic dose? since you have been taking it and are upping the dose, it should not be long. You say you are not sure if the Requip is doing anything? Are you having RLS on a steady basis?

  • It will take little while Leah. The body does need to adjust to any change in dosage.

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