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I suffer mildly at night and can relieve the symptoms by standing up for 90 seconds and mostly will not be troubled again that night.

I can only begin to understand how those serious sufferers feel. The creeping pain is unbearable and I fear my symptoms getting worse with age-I am female and 56.

However I do not understand the serious drugs people on this forum take and continue to suffer RLS. I would urge them to keep returning to their Doctor and to give all exercise based or psychological treatments a thorough try! The drugs you are taking are likely to be having such detrimental effects on your overall health and you still have RLS.

16 Replies

  • Hi. I am glad you do not understand the need take the serious drugs we do. I hope you never will.

    I can only speak for myself about the neuro pain and the "shocks" that run up through my body. My arms and legs play up day and night. This thing is hellish and can make life nearly unbearable at times. That is why we are prescribed such powerful drugs for this disease.

  • I used to have RLS mildly just like you do now. Please so not think for one moment the people on here have not tried everything else before they got to the meds. Some are still trying non med things, and not everyone has success with those. So, most of us, if not ALL of us HAVE to take the meds that are available to treat RLS. I am one of those people who tried everything but now take medication, if i didnt i would have jumped off a bridge before now. If you think that taking the meds are having a detrimental effect on our health, not taking them is worse, sleep deprivation is a killer.

  • RLS is NOT psychological, it is neurological, proven FACT. If you have it mildly, then you do not understand what 45 years of SEVERE RLS is and I hope you NEVER have to. It is progressive, there are many triggers, and there is genetic RLS and Secondary RLS. My RLS is 90% controlled, and I have no issues with my doctor or my meds. If I did not have the meds, i would have thrown myself out a window long ago. So, when someone who obviously does not understand what severe RLS is like, and that it is a lot of trial and error to get to the right med for each person, they need to do some research. Psychological exercises MIGHT help t cope better, BUT it is a physical neurolgical disease. I fine the post slightly insulting. I have managed online groups since 1996, researched my butt off, so for one RLSer to say that to a group of people who are suffering, and yes, some are suicidal, not a good post to being about group harmony. Do your research and then get back to us. LOTS of people have problems with meds until they find the right one. Since 1996 I have had online groups, had the first ever online support group back in "email days", now in Facebook. This post is not helpful , although you deserve an answer. How old are you? RLS is serious, has all kinds of levels of severity, so keep hoping yours stays mild is all I can say. I have done suicide watches more than I can count in the last 2 decades. You obviously do not "get it" even though you have it yourself. I ask your age, because it is a progressive disease. Count yourself lucky. RLS can ruin lives, severe sleep deprivation can kill you. So excuse me if I sound a little inpatient with you, NO shrink is going to get rid of your RLS, and if you think they can then you do NOT have RLS. This is support group, valid question to a point. Like I said, I have many groups that I manage, and if a shrink could get rid of RLS, I would not have over 6,000 people!! Enough said, but think and research before you type. Also, many doctors do NOT get it and they prescribe the wrong meds, which accounts for 3/4 of the posts here. is a great place to start and that web site has been with us since 1996, run by one of the most prominent researchers in the field. Also check out the Johns Hopkins site in the US. This is a legitimate neurological disease, and we do the best we that we can. So consider yourself LUCKY. Serious drugs are given for serious diseases, It is hard enough to raise awareness without having to fight a fellow RLSer. Remember, it can go quiet for a while, and many things can trigger it, so enjoy your mild RLS, you are one of the lucky ones. But, as for the psychological aspect, would you tell a person with MS to go to a shrink? NO, parkinson's? NO, and so on. It shows up on a brain scan just like Alzheimer's does, so a shrink is not going to be able to fix Primary RLS, as in genetic RLS which accounts for 70% of all cases of RLS. Oh, I see you are 56. So you are very lucky to still have mild symptoms, trust me!

  • Not cool!

  • Do you think the very first thing we did was go to the doctor and say "give me drugs"???? NOT! I have tried it all. And, have tried all the herbal things, the approved drugs for RLS, etc. Because of my other physical problems and RLS, I take slow release morphine, short acting hydrocodone, and several meds for many things. I am on disability and so when you get to THAT point come back and tell us to go to a shrink. i did see one for 4 years for PTSD and panic attacks, and she never once thought she could "cure" my RLS. There is NO cure. Remember that, and feel lucky that yours has not progressed..........yet. Some do not, but most do, and again, it is insulting to read your words and hope it is just because you need to go to some reputable sources and learn about a neurological disease which is documented back to the 1600's. Sir Thomas Willis, look it up. Parts of our brain are named after him because of his work, the first known description of RLS. I have had RLS since I was 14 and my entire family has the RLS genes, which you should also read about. I would have offed myself years ago, if not for the meds.

  • Not cool.

  • You can stand for 90 seconds and you won't be troubled for the rest of the night ? You have absolutely no concept of the torture that the vast majority of us go through often 24 / 7 . I therefore do not think you are qualified to comment on which meds we have to take . One thing you are right about is RLS is progressive so one day you may understand however as I wouldn't wish severe RLS on my worst enemy I sincerelyhope that you remain in ignorant bliss

  • Have you been officially diagnosed with RLS? Just wondering, since you DO say the "creeping pain is unbearable". Well, if you have a mild case and find the feelings unbearable, then why would you question the meds. Imagine it 24 hrs a day without medication.

  • I've rolled about the floor after walking, standing, squatting, tip-toeing and doing various other leg type movements until I was so exhausted I couldn't stand. If standing for 90 seconds cured things do you not thing someone might just have done it and realised, (I've often stood for 90 seconds at night peeing and not had any benefit).

    As far as psychological approaches, apart from some basic reframing which may work when you are over the worst of it but I fail to see how people in agony and extreme discomfort can employ any psychological techniques - when I am going through a bad patch there are times when all I can think of is wanting to be dead so would be lost trying any CBT stuff, do you have any specific ideas in mind?

    I've avoided drugs, had to stop drugs as the side-effects were destroying my life, spent a small fortune on vitamins and supplements and begged for drugs and stopped all drugs cold turkey - I still take a couple of very potent drugs one at a right high dose and still there are nights I could take a hammer to my head to get some peace!

    You are so lucky 90 seconds of standing work for you, but to clarify one point - you can't even come close to understanding how bad things are for those of us with extreme RLS and for that you should be eternally grateful. I have contemplated suicide more that enough times and have at least 3 plans where it will look like an accident! I have prayed to Gods I do not believe in and spent far too many hours pacing to even begin counting. I have it all over my body and if the exhaustion from the insomnia wasn't stopping me going out, the flailing from my arms does! Sometimes when its bad I pee outside as I am shaking and jerking too much to go inside without spraying the place like some demented feline! I have spent a fortune on drugs and potions hot water and lotions you name it I've tried it, (except soap f**k the soap!).

    I know for me I've tried everything I can think of and anyone on here can think of to help my RLS and to stop/prevent the use of drugs; your comment that we should avoid drugs and seek exercise first shows your lack of understanding, (I am not being nasty with this just pointing it out so please no offence meant). Many on here, like myself ,suffered for decades before understanding/learning enough/ finding a GP knowledgeable enough to get treatment and tried so much before even thinking of a Dr. I know for the first 20 years or more I had it I thought it was just a mad thing that only I experienced!

    Take care and may your 90 seconds keep working.

  • Hey, raffs! :) Just wanted to wish you a Happy New Year, and HOPE that 2017 is better for a lot of us. I had major knee surgery, so have not been on much. My left knee was shredded on both sides, the left and right meniscus. THANKFULLY, my MEDS are keeping the RLS quiet so far. Have a long road ahead of me, but am so thankful for my angel of a doctor and my MEDICATIONS. Do not know how I would make it otherwise. Cheers to 2017!! Hopefully we will get a miracle, because that is what it will take. So, am glad to have this group and also my friends here. Plus, the groups I manage on Facebook and elsewhere. We are not alone, and are in good company, at the VERY LEAST.

  • And may 2017 bring you all 2016 didn't. May your legs be at peace and if there is any running to be done be it through the mind of a loved one. For all my fellow suffers I hope you all get a break from the shitty side of life and 2017 is full of joy and peace.

    Had both my knees done and like a fool didn't rest properly nor exercise properly and so still have bother, (mind you hard to rest the knees when the legs are at you!), hope the heeling isn't too long or bad on you.

  • I agree with all the above comments.

    However - I would pick up on one point you very validly make. That is, why are we staying on medicines that are not apparently working ?

    The answer is twofold .

    1- some medicines are effective for a limited time (Dopamine Agonists mainly) and so we have to keep changing when this "augmentation " occurs.

    2- Everyone has different reactions to the many available medications- so there is a certain amount of trial and error involved.

    3- Drs, in general , are woefully ignorant about this condition and often prescribe unsuitable medications , which obviously leads to unfortunate reactions in their patients- (and a major part of our work on these fora)

    4-The most effective medications for long term relief tend to be the opiate family, which , for various reasons , Drs are reluctant to prescribe. Hence many people are on unsuitable medications for no other reason than social stigma.

    Ok- I said twofold- just checking to see were you awake!😈

    Thank you for your post- it is always good for us to be challenged- although you did stir up a hornet's nest.🐝🐝🐝


    Happy New Year to one and all.😎

  • I apologise for any suggestion that I was belittling people's suffering that was not my intention.

    RLS may describe my symptoms it does not adequately describe your involuntary spasms perhaps a change of name would help to emphasise the seriousness of the condition?

    I will do further research.

    I would still assert that exercise and relaxation can be helpful in allowing the body to cope.

    I would also urge everyone not to persist with a drug regimen that is not relieving their symptoms.

    Do many RLS sufferers have other underlying health issues?

    If a change in brain chemistry has been identified has that not led to more accurate treatment?

  • I like your comment AHG. And there has been a change in brain chemistry that has been identified - it's called "brain iron dysregulation. Thank you for your well-intentioned, well thought out suggestions. Hope you are doing well.

  • Exercise can actually make RLS worse for some. You cant relax if your legs are saying get up and move. There are only so many medications available to RLSers. Most on here have tried them all and like madlegs has said not all doctor's are happy for us to take certain meds like the opiates. Its not like we are not trying. If there was better accurate treatment out there do you not think we would know by now. You do really need to do more research on RLS before you try to tell us what we should be doing. Yes some people do have other health issues but not all related to RLS. RLS is voluntary movements we have to move. The name change has been addressed many times in the past and has been decided we stick with Restless Legs Syndrome.

  • Not cool. AHG's comments are from the heart and you're jumping down the person's throat.

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