rls sucks!

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I've had rls for most of my life. It was tolerable until my car accident a year ago. Now if I'm still for any period of time, sitting, laying, standing, it goes nuts, like a painful urge to move my legs, then it starts feeling like needles being rammed under the skin parallel to my legs, and if I resist the urge to move them they move on their own! I've tried different over the counter meds to help but they dont. Is there anything I can do

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  • Posted

    Hi Cheyenne38

    Its a really nasty condition.   I am a bit afraid of being accused of being a nutter because I keep suggesting to people to try a diet.    I have given details in a discussion called "RLS and Diet""    The reason I suggest it is that it has worked in several cases.   Some people have suggested that its stupid because the diet is intended for irritable bowel syndrome.   BUT I have slept for the last 15 nights with a bit of mild RLS on two nights and bad RLS on two nights.    One of those was because I celebrated Mothers day with a pint of Guiness and another was because I experimented with a very high dose of magnesium.  If I slip I usually have two bad nights in a row,   

    Read all the discussions on this forum.  Its a wonderful resource and you will get hope because there are so many people that have found a cure or at least some relief.     The diet is just one.   Some have found magnesium works wonders while others have had success with the normal pharmaceutical drugs.    Its a wierd disease and cures seem to be different for different people.

    I push the diet a bit because its cheap.    How to do it is all on a university web site and it has been adopted all over the world for IBS victims.  (See the other conversation for URL details) In 8 weeks you will know if its going to work for you.   In fact two people have had relief from the first day!  For IBS it works completely for something like 50% and provides relief for another 20% (from memory) so if it has the same effect for RLS its a great cure.   Of course so far for RLSD its been 100% but that's from a very small sample.   I reckon its well worth a try.

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    • Posted

      Great

      The best place to start is at the Monash University web site which is given in the discussion on ""RLS and Diet"  I can't write it here because if I do the entry has to be vetted which can take some time.   Enough to say to google      Monash university FODMAP     and you will find it for sure.   My main advice is to stick to the diet absolutely strictly fror the 8 weeks and GOOD LUCK.    Let me know if there are any questions I might be able to help with.      Its probably a good idea to run the diet past your doctor because its fairly fussy and its always worth giving him a chance to think about it to be sure its suits you.   Be prepared for him to say it can't help RLS.   I saw a neurologist5 and he was sarcastic.   I must write to him soon.

      Cheers

      Graham

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    • Posted

      Could you briefly explain what kind of a diet this is please? I went on the website but could not see a sample menu or anything like that only the offer of ordering this diet. I do like to have an idea of what I am buying before I buy as I have bought quite a few useless diet books in the past and don't want to make the same mistake again!

            I also noticed that they want payment in Australian dollars. How do you go about this please as I've never before bought anything and paid for it in Australian dollars. Sorry to be asking such a probably basic question. Thanks. 

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    • Posted

      My apologies.  I was surprised by your comment so I went into the site and discovered that it has changed.   It used to have all the details of the diet and even some reciepes (I think I remember) for free.

      I will make more inquiries but I suspect they have decided to go a bit commercial and convert their great public service into a profit centre.   Our government is slashing funds for all research so our universites are forced to focus on funding at the expense of being decent people.  ( a bit political there but watching it happen is very upsetting)

      I will make inquiries to see if the information has just been shifted (in which case I will apologise to them) but I think you have to pay for it from Monash.

      I have found a couple of other sites but they are not necessarily as authoritive as Monash so I dont like to recomend them yet.   I'm not an expert in this field so I was happy that Monash would do a good job but I'm not sure about the others.

      In the meantime there is a site that looks to have the right info as far as I can tell but it seems to be a private blog.   Its probably good to read it now so you get an idea of the diet and then in the next couple of days we might find that we can rely on the blog or find a better page.

      London Bridge Hospital seems to be the centre of the action in the UK but I think all their information is also for sale only.  There is a university in the US (could be Stanford) and they have also adopted the Monash diet so I'll look at their site later today.   I can't post the url of the blog site or this comment is delayed until the moderator checks it out which might be a day.

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    • Posted

      I have replied but I included a guide to another website which the computer regarded as a suspect link.   It is delayed in moderation.  Briefly the Monash website seems to have been changed so they are not giving anything away free anymore.   I will do some research and get back to you.
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    • Posted

      Hi Graham,

      I removed the link and your comment re recommending other sites in future. We do not allow links to commercial sites or private blogs generally. I have asked before whether we should have an article about it for our site but the reply was because it needs the help of a dietician it is unsuitable. In the meantime the Stanford link is below.

      https://stanfordhealthcare.org/content/dam/SHC/for-patients-component/programs-services/clinical-nutrition-services/docs/pdf-lowfodmapdiet.pdf

      I will also post it on the other discussion which you can link to without it going for moderation. Use the link

      https://patient.info/forums/discuss/restless-legs-and-diet-372883

      Regards,

      Alan

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  • Posted

    I have had restless legs since I was a child.  I can't even begin to count the number of times my dad had to get up during the night to rub my legs to relieve what I perceived was pain. I was only 8 years old and RLS or Willis-Ekbom's Disease  (WED) or Wittmaack-Ekbom Syndrome as it is also named wasn't and really an houseold name. Doctor put it down to 'growing pains'. I think at 57 I can safely say that it isn't that.  Anyway, I also suffer from Fibromyalgia and Sleep Apnoea and have learned since being diagnosed with SA that Restless Legs can sometimes be a symptom of that condition.  I always thought it was due to a dopermine deficiency in the brain but I'm no doctor.  However, in 2009, after having severe attacks on a daily basis and being scared to sit down to avoid the onset of said RLS, my Doctor prescribed a tablet called "Ropinirole".  Only a VERY small dose initially and increased until an effective dosage was reached.  I am pleased to say that I very rarely suffer from such severe attacks. Would love to say I'm completely cured because I think it 's a life long cross to bear but it's 99% more tolerable.  My Dad suffers from this debilitating condition and now he is on the same tablet, so is Mum. So there is help available. Beats rolling around on a cold floor in the middle of the night.
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