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Nearly had enough of this RLS

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Hi all I have been suffering night and day with RLS and have tried allsorts so i can try and get a night sleep and now i have turned to drink just to give myself some sleep instead of staying a awake all night.

I recently seen my gp who is trying to help me but now i have 2 problems instead of one problem Drink and Rls.

I have tried to exsplain to the job center how it affects me but they either dont care or dont understand what i am going thru so i just wonder if its  worth it anymore, if it wasnt for my wife and son i would of sorted it out a long time ago but now i feel i have to suffer for the rest of my life with Depression lack of sleep and lack of concerntration and not knowing what the future is going to be.

 

3 likes, 66 replies

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  • debbie27473
    debbie27473 copystuff

    Posted

    Please don't despair. When I was diagnosed with another condition (spinal Stenosis), I was given Tramadol for pain relief. To my overwhelming delight, I found that they not only helped with the pain but also hugely lessened the RLS. As long as I take one a couple of hours before bed (as well as earlier in the day), I don't suffer with this ghastly condition and get a good night's sleep. Another thing that might interest you is, I can't drink alchohol whilst taking them without feeling extremely ill. Hope this helps you. Wishing you all the luck in the world. I wish doctor's would take this condition more seriously. I felt like I was going to go insane before I had the Tramadol. Thank goodness for family (especially children). They keep us fighting when nothing else can. Debbie 
    • shirley14923
      shirley14923 debbie27473

      Posted

      Hi Debbie

      i have been living with RLS for 30 years and was on all medications with side effects. One night I took a 50mgslow release Tramal and felt great. I shared on them for 3 years and very happy.

      i had shoulder surgery 3 months ago and for pain relief had to take 100mg Tramadol. Now I am off those my body won't except the low dose Tramal. I have tried  Sifrol .125 for a week with no relief . Now I am trying Madopar.

      i believe people should try the Tramal slow relief before they try the hard stuff

      Shirley

  • copystuff
    copystuff

    Posted

    Thanks for the reply the Doctor has put me on ropinirole but i am worried about the possible side effects

     Falling asleep suddenly without feeling tired beforehand.

        Any changes in your behaviour such as an increased desire to gamble, binge eat, or an increased sex drive.

    If i hadnt of taken cholestrol tablets i wouldnt be in this mess now.

    • graham9772
      graham9772 copystuff

      Posted

      What cholestrol tablets did you take and why does your doctor think they caused RLS?

      Has anyone else had their RLS caused by takingt medicine?

  • copystuff
    copystuff

    Posted

    amlodipine for blood pressure and simvastatin for cholestral

    simvastatin side affect

    simvastatin may cause side effects (adverse drug reactions) in some people. One known side effect of simvastatin is muscle problems such as pain, or cramps, and other rarer serious muscle effects.

    Taking simvastatin with some other medicines, such as amlodipine or diltiazem, can increase the risk of muscle problems. If you are taking simvastatin and also taking amlodipine or diltiazem, your doctor may change your dose or treatment because of this risk.

    • graham9772
      graham9772 copystuff

      Posted

      That's pretty serious when something as important as cholestral control can cause something as bad as RLS.

      As you have said the side effects of RLS can be devasting to the rest of your life, mostly due to lack of sleep, I think.

      I have an idea that RLS is somehow related to another not well understood condition called iritable bowel syndrome.(IBS)    This idea is partly based on my experience of trying the Monash University FODMAP diet that was developed for IBS.   I have spoken to Monash about this and they plan to do some research to test this.   In the meantime I have had REAL relief coindicing with sticking to this diet.   I can't be sure that the effect is real but I am sleeping much more.

      If you're interested in trying this diet I can give you more info and you can google "Monash FODMAP"  to get to their web site.

      I strongly suggest you invest 4 weeks on this diet being absolutely strict with food, no caffiene, lactose free milk etc.   You can continue on whatever drugs the doc has prescribed.

      I feel sorry for the doctors who are doing their best but the tools they have are just not up to it.

      I think syndromes are called syndromes because they are a collection of symptoms without a good understanding of the causes.

      Give the diet a go and see if it helps.   I'm sure it won't hurt.

      By the way  Monash is a well respected university in Melbourne Australia.

      Cheers

      Graham

       

    • RobertT
      RobertT graham9772

      Posted

      IBS may relate to a bowel condition which inhinits the absorption of iron and iron deficiency can result in RLS.

      Gluten intolerance may be, often is, the cause of IBS. You will find gluten described as a neurotoxin. Maybe it causes brain damage that results in RLS. I've been gluten-free for over a  year, but still have RLS.

    • graham9772
      graham9772 RobertT

      Posted

      Dear Robert

      I have fairly serious RLS and I found that I feel better taking a large dose of iron (300mg) per day although I was not found to be deficient.   I can't explain that but it worked. when I started on the iron I had about a month of relief.

      I'm, interested in you being gluten free.     I became Gluten free a couple of years ago but it seemed to give intermittent relief.  Some nights were really bad but I couldn't remember eating anything I shouldn't have.      Then I saw the Monash FODMAP diet and found that there was a huge overlap so wheat is a source of fodmaps and also gluten and many other things also have both FODMAPS and Gluten.   However there is also a range of things that are gluten free but contain FODMAPS.   Just to mention a few that you would happliy eat on a gluten free diet there are apples pears garlic onions lactose in dairy products and many otherse.   Hence I was being really careful on the gluten side and unknowingly enjoying many FODMAP unfriendly foods.   So on days when I didn't eat an apple the Gluten free diet seemed to work and on other days with steak and onions the GF diet failed.

      I have been on a FODMAP diet for a couple of months and have had a vast improvement in the RLS symptoms.  The diet is a bit tough but no where near as bad as living withoyut sleep.  

      I would recommend you give the diet a try for two months and see what happens.   I dont think there is any downside except eating more bananas and rice cakes than ever before.   Its really not all that bad once you plan your daily food.  Certianly not bad compared with RLS.

      Monash have a good book for about 8 pounds and an App for your phone that allows you to keep track of FODMAPS.   I can't load the App unfortunately but I have a friend diagnosed with IBS who says its great.

      I really wonder if RLS is just another symptom of the same cause as IBS??

      I would love to hear news if you decide to give it a go.

      Cheers

      Graham

    • RobertT
      RobertT graham9772

      Posted

      I hope you mean 30mg of iron – that's already twice the RDA. I stopped taking it for a month or so because of fears of oxidation damage in the brain and accumulation in the brain. Started taking it again when RLS seemed to become more acute.

      There seems to be increased interest in the benefits of dairy products. For one the fat found in butter and cheese seems to be good for the production of myelin, and I'm inclined to think my tendency to get leg and toe cramps is lower since I've increased my consumption of these. (It's also thought to help with sleep.)

      Garlic is so good for the circulation and other things that I'd have to see really solid information to give it up.

      Eating too many rice cakes, I had to go the doctor with a rectal blockage last September! My consumption of bananas is so high I almost feel guilty of greed.

      There seem to be a number of ways of getting RLS, almost as many as getting a headache! It will be interesting to (hopefully) find how it decides to affect which leg on a given night.

    • graham9772
      graham9772 RobertT

      Posted

      Dear Robert

      Thanks for the warning.   I did mean 300mg so I've done a bit of homework.  Its actually only 200mg of elemental iron but I still need to check up on any long term effect.   The standard maintenance dose recomended by the manufacturer is one tablet per day (100mg) and the dose for iron deficiency is 200mg so its not far away from that.   The references I just looked at suggest a short term damaging dose is 20mg per kg so at 100kg body weight I am safe from that.     I have told several doctors what dose I take and they have only suggested that its a waste of money.   In infants it becomes serious when they raid rhe medicine cabinet and eat a handful of iron or multi vitamin tablets.   The damage they refer to is liver and other organs.     Thanks again.

      Its interesting that you apparently get RLS in only one leg.   I have always had it almost simultaneously in both legs and sometime both arms.   There are lots of mysteries about this thing.

      Bananas.  When I started I ate several bananas a day and this seemed to creat a FODMAP reaction so I limit myself to one per day and have no problem.

      Dairy.  Not everyone has a reaction to  Lactose.   So dairy may not affect you.   I was enjoying gluten free ice cream for a while thinking how lucky I was until I realiseded that ice cream coincided with a bad couple of nights of RLS.    Gave up the ice cream at once.  

      The ide3a of the FODMAP diet is to start really strict and then introduce new foods one at the time to see if you react.     I haven't tried the reiontroduction yet because I'm scared of losing any more sleep and being unable to work for a couple of days if I react badly.

      Thanks again for the advice about iron.

      Cheers

      Graham

    • nancy71417
      nancy71417 graham9772

      Posted

      I know this is a long time ago, but I can't believe I'm reading this! I used to live on bread, yogurt, cheese and as much fruit, oranges, apples, dried fruit, tea with lots of honey. Then I went on No/Low Carb for high cholesterol. My restless legs that I have had for 20+ years got 90% better!!! (Andy my high cholesterol got much better) I do always drink several big cups of coffee every day. I think I have to do this FODMAP thing.
  • sharon_17397
    sharon_17397 copystuff

    Posted

    I have discovered that the worse thing that I can do for RLS is to eat sugar. And alcohol is full of sugars. You might wish to consider stopping drinking. I took a magnesium supplement at breakfast, lunch and 2 at dinner and I experienced zero RLS symptoms last night. Perhaps this could help you?
  • rondre
    rondre copystuff

    Posted

    I have had severe RLS for alol my life, i am now 77 and have done years of research and have been treated by leading physicians in the field.  Long story short, go to your doctor, tell her/him you want Ropinirole LP (slow release)start with 2 mg.  nothing less, Your RLS will stop, you will sleep if you take this dopamine agonist about 2 hours before bedtime.  You can drink, but it would be a good idea if you were to cut way back on the booze.  It will serve no purpose and just ruins the next day.  If 2mg. isn't enough after aboiut a week adjusting to it, then ask the doctor to up your dose.  I take 2 LP in the late afternoon and then 8 mg. about 2 hours before bed, but mine is an extreme case.  My theory used to be that kids with ADHD are really suffering from RLS, and now some researchers have proved that this is the case.  The kids cannot sit still, they must keep moving which is what  you are experiencing.  RLS can be a nightmare.  Ultimately you will have to increase the medication because all dopamine agonists end up causing "Augmentation" which means you need more of the med. to fill the same role until finally you need to change meds, then after a while come back to the first one.

    I have tried just about every med. on the books.  Whatever you do do not take Sinamet.  It is entirely the wrong choice.  All these meds are used to treat Parkinsons Disease.  To this day no one knows the cause of RLS, we do know that in some brain tissue dopamine is not as available as it needs to be.  The feeling of "restlessness" is really a phantom, it is not in the legs, it is all in the brain chemistry.  Certain foods help.  Do a web search, but definitely slow down on the booze, get ropinirole (Requip) avoid Mirapex, augmentation comes faster with it that with Requip.  Figure out which is the best time of the day to take it (never in the morning,  you don't need it then) but each body processes it differently so it might take an hour or two to kick in.  Good luck, keep courage, and be responsible for your own health by researching and reading on the net.

    You have way more available to you these days then I did way back in the 40s, 50s, 60s, 70s, 80s, 90s.  You owe it to yourself as well as to your family.to beat this thing sanely and securely.  Alcohol will only lead to greater problems.

    Stay well.  In all sincerityh, Rondre

    • Boomiesmom
      Boomiesmom rondre

      Posted

      Sinemet worked well for short period of time.  I then developed HORRIBLE bback then leg cramps.  Muscles cramped to size of baseballs.  On crutches, back brace, physical med dr for many visits.  This happened after 5months on meds.  UCLA dr said, oh no can't be meds after this much time.  I quit meds immediately on my own and no more cramps.  Took weeks to recover from cramping pain.  Requip worked well for many years.  Often with robaxin muscle relaxant.  Lately on Gabapentin.  Worked rather well, now augmentation.  Frustrated as I have severe pain nightly requiring Norco and Tylenol/codeine and now insomnia as well.  Still use up to 600mg gabapentin .25 Requip  no relief.  Trade off for Requip is lousy headache every morning.  Going to see neurologist re:  what next.  Am getting so discouraged.
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