advanced rls

i was diagnosed with advanced rls last yr . when it acts up it is enough to drive u insane. my legs are movin all over my arms my neck an face an when ur out in public an u cant control ur self. im sure people think i am nuts. but they dont understand what it feels like for the rest. its almost like having a tick all the time. i work in a nursing home an it can be difficult for my coworkers to understand as well. have to go back to doc for new meds. sure wish it would just quite all together

38 Replies

  • I am so sorry that you're going through that! I have RLS and know what your going through. I pray that you will find some kind of relief soon!

  • What sort of medications are you on now???

  • What medications are you on now???

  • Carol1948. I no how you feel. Quite ofton i get very tearful only people that have it no what we are all going through. Hope you find some relief soon

  • Unusual for RLS to play up while you are moving, movement usually helps with the symptoms. What meds are you taking for your RLS.? And are you taking any other type of meds for any other condition you may have..?

  • mine act up when standing/moving too so maybe not as unusual as you might think ...

  • mshort,

    I do exactly what you do. I call it ''going into my act'', some of my family are amused at my candor and others think because they don't have it that is is a personal defect that somehow I am responsible for.

    Two of my aunts were severe and my mother and all her sisters had RLS. There is no way I could dodge the gene. I have suffered 40 years with it, with 28 years with no successful treatment. I am under some control now but the same med that is making life bearable, is killing my mind a little at a time.

    My thinking is slower and my recall is slowly getting worse. Sometimes I feel like writing the same letter Ronald Reagan wrote, saying a coherent goodbye, whilst I still can.

    Approaching 80 years old, with a low quality life, is disheartening and to cap it off I am the principle caregiver to my wife of 60 years, who is worse mentally than me, so I must go ahead and hope for the best.

  • My heart goes out to you, I hope something can be found very soon to give you a decent quality of life. life is so cruel at times.

  • Hi windwalker I had rls for 10 years and yes I know how you feel .

    I've had many sleepless nights tossing and shaking my legs all nite its really unbearable had tablets from the DR and had stuff from the health food shop changed my diet nothing worked for it ...

    But I have 1 product that is guaranteed to work for your restless legs its a money back 100% guaranteed to fix your restless legs if you would like to email me we can talk more about it my email is ....


    I have no more restless legs

  • donnats,

    Putting your email address on this web site will cause a lot of junk email.

    If you have something i can take or do, why not post it here?

    Waiting your reply,


  • Hi well the product is called stemcell read all about it on line if you its really really good and get back to me and tell me what you think it will fix your rls



  • I take requip for my works for me

  • Hello there. Really feel for you. I'm almost 30 years old but my symptoms are pretty bad sometimes. ... I imagine when I get older I might go through similar situation to yours. The way you talk about it sounds as if the symptoms are relatively new to you. How long have you had it? ? How old are you? Have you looked into non drug ways to at least ease your symptoms? I have had it for a long time and I can tell you that there are two big players on what triggers the feelings, your digestive system and your brain. I actually believe RLS is more of a digestive disease than neurological. Do you drink alcohol often?

  • There is no evidence of RLS being a digestive disorder

  • It is officially listed as neurological disease. Dietetic changes appear to help SOME people, but it is all theory. The only thing that is not 'theory' is that RLS is a neurological disorder. That is one thing we know for sure. We may not know much, but the experts and researchers going all the way back to the 1600's have always called it a neurological disorder, the main research was done in the 40's, then got picked up by Wayne Hening, MD (may he Rip) in the 70's. If Dr. Hening had not picked up on the research that was done in the 40's, we may not be as far as we are now. And, some days it feels like nothing is being done, even though we know somewhere, somehow, there are small amounts of research going on now.

  • If you become a member of the Restless Legs Foundation (see the website, you will get a wonderful quarterly newsletter that is chock full of info about RLS - stories from patients who have it, new clinical trials which are starting up, new research info, etc. BTW, LOTS of research (not small amounts) about RLS is ongoing!

  • RLS is definately neurological, no doubt about that.

  • eh! digestive ..... it's defo a neuro disorder there's plenty of proof of that show me proof why you think it's digestive ... lets have a read hmm....

  • I think the neurological part of the disease is secondary. Yes what directly gives you the symptoms is of neurological root but it too often seems to be triggered by a digestive issue. Pregnancy RLS for example, it can be much easier to explain as due to the digestive system not working so well than a neurological change. As you get older RLS symptoms get worse because your digestive system doesn't work so well anymore. I will definitely go read more research about this since I actually have a bachelor in biomedical science but I remember reading before that the digestive system is too often involved in this to be ignored. And to clear up, I understand that the symptoms are neurological but I'm not so sure about the cause.

  • pregnancy everyone knows it changes the chemical balance to your brain your whole changes when your expecting , sorry but I don't believe in your way of thinking that's its something to do with your digestive system bachelor degree in biomedical or not hmmm.... show me proof that I can read

  • Hi BR-OZ, No one knows what the cause of RLS is, not even the experts. Primary RLS, is genetic, inherited from a parent and so they need to do more research for that. 70% of people suffer with Primary RLS. Secondary RLS is from an underlying condition. low ferritin level, pregnancy are two of them. No one knows why when women are pregnant that some and i state some have RLS symptoms. Those RLS symptoms can go away after giving birth, and can come back later after a few years or less and then stay. I have had RLS since i was a teen altho mildly then. I have had 2 children and never had RLS while pregnant and mine only become unbearable when i retired. RLS is neurological whether you have Primary or Secondary RLS. I think with respect you are not reading the right things about RLS.

  • I know everything what you just said.

  • BR-OZ,

    It may be digestive tract triggered for you, but I watched my mother and all her sisters go thru this and also saw her disabled 94 yr old mother with the same thing. I cannot imagine a diet change helping me, but would try anything and I have tried lots of remedies to no avail.

    Why not publish the diet that would stop it if that is your belief.

    Windwalker (79 yrs old and had RLS more than 40 Years).

  • I don't think there is one single diet that will minimize or stop it. First it is what upsets your stomach. .. I've heard some people saying gluten. . Or rice are bad, but it might be that it is only for them that it doesn't do well. Also I ask your age because there is one issue with age is that the intestine doesn't absorb the nutrients do well as it ages and that I believe has great impact on RLS. I probably cannot imagine how bad your symptoms are, I have sometimes really bad symptoms but never took medicine for it. I think that maybe if you study your own diet you may be able to go by with smaller doses of drugs.

  • I must have had old guts when I was middle aged. The symptoms of RLS have gotten worse with age, so your theory of absorption sounds plausible. I take Potassium, Magnesium, Iron, and vitamin D, just because I have read that they are some of the reasons for RLS. I belong to two of the groups who has rampant RLS. Cajuns, French Canadians, Icelanders Appalachians, and Eastern European Jews. are the five groups that almost all have RLS and it is genetic. I have ancestors from Appalachia, where they settled in 1650's and they intermarried with Eastern European Jewish people, so my chances were doubled that I would have the condition.

    I have two grandsons, both who have the trait. One has unknown genetic history (adoption of mothers father)) on his mothers side and the other has a Jewish mother who has it bad. There are certainly more than one cause and one is certainly genetic.

  • I am astonished that you have a degree in biomedical science and insist that RLS is for the most part a digestive issue!!!! I am being treated by a renowned doctor who is involved in not only the treatment of RLS, but also has initiated many clinical trials and written scads of research papers about RLS. I can't even begin to understand where on earth you got your information!!! You would serve yourself well to go to the RLS website:

  • BR-OZ,

    I don't know if ypu were talking to me or not, but in case I am answering.

    I am 79 yrs old and have had symptoms for more than 40 years.

    I first took some version of what they now call Vicodin. The only relief I had until 2002 was one or other Opiate.

    I have been thru withdrawal a dozen times, when the drug dose got large and ineffective.

    In 2002 I had had it, and was at the end of my rope. I had an old friend who was also a doctor and teacher at Northwestern Medical School in Chicago.

    I confided in her that I couldn't go forward unless we found some reason why and she went to work and found a friend of her's who was also at her level at Northwestern, who had recently started herself on Maripex.

    I took it for the first time that day and slept for 8 hours. I kept increasing the dose until i was at the maximum and in about 6 years.

    She had gone out of practice because of her age and a neurological problem similar to mine, so I got a referral to another doctor who specializes in RLS and related sleep disorders.

    I have been on requip and am now beyond the maximum dose of it and am waiting for a break through and hope it comes in my lifetime, which isn't very long, statistically, for me,

    I am convinced that it is a neurological disorder, because all my mother's siblings, (there were 13 children in her family) had one degree or another of RLS. two became disabled in their 70's and were wheelchair bound. All of them lived into their 90's and one lived to 106. I am not interested in that long life, I just would like some quality sooon,

  • I have RLS and since 1998 I have been going to a doctor in Houston who specializes in treating it. If you truly have RLS, over the counter drugs are will be wasting your money! My RLS is under control now except when I am prescribed a drug for another ailment that aggravates it. The RLS website has a list of drugs that you should avoid if you have it. And, by the way, RLS is definitely a neurological disorder. Your digestive system has nothing to do with RLS! The best thing you can do if you truly have RLS is educate yourself about, read, read! The RLS website is a great place to start:

  • Sorry to hear of your plight. I've had RLS my entire life (I'm nearly 54) and only discovered Tramadol as I was prescribed it for sciatica. Provided you take it in the right dose, which I'm sure varies from person to person, it seems to work well to get rid of RLS symptoms. Unfortunately, like most drugs, there are side effects, so it's a case of balancing one thing against another. The worst side effect is that without it my RLS symptoms go haywire. It can also make you tired and give you a slightly spaced-out feeling, but for me that's only when you take it in high doses and you do adjust. I hope you find something that works for you.

  • In some cases (like mine) tramadol can also augment RLS in the same way that dopaminergic drugs do - so if you do take tramadol for RLS keep an eye out for your symptoms getting worse periodically. And as MumofSam points out, opioid withdrawal can produce RLS symptoms, so a stable dose is vital. Good luck :)

  • I can totally relate. I get the awful sensation all over my body now. Can't remember the last time I could just sit and relax. No one who doesn't have this miserable disease can understand. I've been on every med there is but nothing works anymore. Fortunately (or unfortunately) and have a severe spinal stenosis and have been prescribed opioids for it. That does give some relief. Good luck!

  • I also have severe spinal stenosis, have had 3 back surgeries and 2 neck surgeries. So, fortunately, we figured out that my pain meds DO take care of my RLS 90% of the time. I have been on every med on and off the list for RLS.

  • how you work I don't know but know I couldn't as I don't sleep enough how do you sleep? you only mention about what its like at work and how others don't understand you try not to worry about others and what they think do what you feel I use to care but don't anymore . like you mine acts up too even when walking about arms legs anywhere it likes to act up lol very rare I get tosleep before 6am now days then only hour or so sleep if lucky . hope you find the meds that work for you :) x

  • I know that I never suffered from RLS to the degree that you are but I can certainly understand that feeling when your legs just don't calm down or relax at night. Please visit . I urge you to read the whole story, but the most important part is what the Doctor's have to say about low-grade-systemic-inflammation and how it can affect everyone, in different ways. I feel so good now I could cry...its like pressing the EASY button in life. I hope the info helps you in some way at least. Good Luck!

  • I have just finished reading the article which is very interesting. Chronic low-grade inflammation seems to be what the article is proposing as the cause of many ailments. I can accept this as I see the human body and mind as a beautiful and delicate web where all parts interact and affect all other parts to a greater or lesser degree. If one part is ailing then other parts will be affected either positively (upping the ante to compensate) or negatively (reduced efficiency/efficacy). I will be looking into this further. Those people here that have been quick to deride such theories should think again.

  • mshort. can you say what meds you are taking as you have said you need to go back and see you doc about new meds. Are the meds you are taking stopped working.? If so that could be the reason you are suffering the way you are. Some meds can make RLS worse so wondering what other meds you are taking.

  • Hi mshort nice to meet you I've had rls for 10 yr I now how you feel it drives you crazy .

    I've been on heaps of different stuff from Drs and health food shops but nothing works .

    Ive changed my diet several times but still no change .

    Then I tried this stuff and its 100% guaranteed money back if it doesn't work .

    If you would like to know more about it you can contact me on


  • Requip helps my RLS

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