22 Replies

Next
  • Posted

    I find putting my legs in coldest water I can find. I let the tap run until really cold and put my foot into it, I splash the cold water up my leg. I also bend my knee put that in the sink and splash all up my thigh. Also will put the shower on and take that of the wall and have the temperature turned so it is cold. It shocks the leg, and I find the legs improve. 
    Report / Delete Reply
  • Posted

    Hi Billy

    I've suffered for years on and off. Some people have recommended magnesium oil spray, didn't help me sadly, but has helped some. The only thing that helps me is keeping the bedroom as cold as possible. Windows always open and also a fan on. Sorry I cant help more. Hope you get some help, its a horrible thing to have 😐

    Report / Delete Reply
  • Posted

    Well there's L-DOPA extracted from the velvet bean. However, it's said to become ineffective even more quickly that the prescription drugs, and its side-effects may be worse.

    Some find relief using a leg compression machine. These are quite expensive. Appropriate electrical stimulation devices are cheaper, but not always successful, sometimes making the situation worse.

    If you've got it badly, you'll be glad prescription drugs work for you, ideally at a low dose, of course.

    Report / Delete Reply
  • Posted

    Just looking thro' my book for non drug therapy and avoidance:-

    Relief can come from: mental activity eg crossword, Physical activity eg walking, sexual activity eg orgasm, Massage eg rubbing legs.

    Abstinence from your triggers can help: Caffeine, alcohol, nicotine,

    Avoiding some medication: eg antihistamines, antidepressants,

    Some people find iron supplements help but check with doctor first (I used to increase my ferritin level to avoid "augmentation" )

    Regular bedtimes/ awakening times may help (if you can get to sleep!)

    Don't know of any over the counter fix.

    Have tried ralgex and neurofen + when desperate but best fix for me is to get up and read for half an hour and then go back to bed and try again. Sometimes I get a complete nights sleep, usually up once for half an hour, sometimes up 3 times but I am on Tramadol nightly and couldn't cope without.

    Even my specialist told me I would have to take responsibility for finding out my own best solutions. He said I should read up and follow forum discussions as medical knowledge is limited and GP's are unlikely to help much.

    Good luck

    Report / Delete Reply
  • Posted

    Dear Billy

    I feel like I am flogging some snake oil solution for RLS but there is a vey respectable non-drug solution that works for some people.   It was developed by the Monash University in Melbourne for IBS sufferers but there are some RLS people who have tried it and found it works for them.   There are probably some who have tried it and found it didn't work for them     You seem to have about a 60% chance that it will help you.

    Its called the FODMAP diet and there are a lot of entries on this forum about how to do it.    Your doctor should know of it but probably has never heard of it being applied to help RLS problems.    Search this forum and read as much as you can before you see your doctor to make sure that your body is fit for a fairly limiting diet and to make sure he can't find any treatable cause as has been mentioned.   Low iron has been found to be a cause in some cases I have read about and others have found low Magnesium causes RLS.

    If you intend to go ahead with the diet prepare for up to 12 weeks of strict diet. Don't cheat even a little bit or you are just wasting everyone's time.   Get your doctor to recomend a dietician to help you.   If the Dietician doesn't know lots about the FODMAP diet then dont waste time  -   FIND another dietician.   Ask your doctor to talk to the dietician to make sure they are familiar.   Lots of people with IBS get a "cure" from this diet so the dieticiam should be fully aware.   Get the list of foods you can eat and read every food label before you let it past your lips.

    You might be intolerant to milk or apples or pears or lots of things.   Dont try to apply logic and say if its haelthy then its good for you to eat.   The only way to know if its on the diet is to run expensive tests on the food and Monash has done that for you

    The food you eat is just ordinary food.   You dont have to sign up for an expensive diet and you dont need any of the drugs.   For me I had no drug option because I had bad reactions to the drugs I tried.   I know some people find the drugs work for them for years but they seem to be a minority and the RLS usually adapts to circumvent the drugs.

    If I can help in any way I will.

    Good Luck

    Graham

    No alcohol   No caffiene   But you can eat bacon, eggs, steak, potatoes, rice  and lots of other foods.

    Read up the other discussions and then give it a try.    You might get 10 hours sleep one night soon!

    Report / Delete Reply
  • Posted

    Hi Billy, I think the first thing you should do is look at every pill you take, even if your RLS started when you were young.  Antidepressants, antacids, statins, antihistamines, melatonin, calcium channnel blockers, diabetes medications, high blood pressure meds can all make RLS much worse than it has to be.

    For decades now scientists have assumed and proven that RLS is caused by a genetic tendency toward low levels (ridiculously low levels) of brain iron...NOT low levels of body iron stores.  People have gotten their stores way up and still had RLS.  I have very healthy iron stores yet the only thing that relieves my RLS when it comes on is a very broken down form of iron called iron bis-glycinate.  It worked the first night and every night as long as I take it on an empty stomach away from food, milk and other pills.  Some people swear by plain old ferrous sulfate however that does not work for me sadly - it is somewhat cheaper.  I truly believe that in order for iron tabs to work they not only have to enter your bloodstream from the GI tract but have to cross the blood brain barrier.  A tall order but it can be done.  Oddly enough, the lower your iron stores, the more likely that iron will be absorbed from your gut so I never take iron until I actually have the RLS.  Since it relieves the RLS completely in one hour I never suffer much.

    The low levels of brain iron that scientists have found in RLS patients causes the corresponding shoddy dopamine receptors (especially the D2 receptors) that scientist have similarly found in our brains.  However our brain levels of dopamine are normal to high.  It is just our transport system (the receptors) that are bad.  The receptors hurl that dopamine down our spines where it makes its way, neuron by neuron, to our legs and arms and quiets them.  Rather than hurling down our spines, the dopamine is probably more like a drip.  Alot of times that drip is enough, but then someone injures their back, or starts taking an anti-depressant and then for the first time in their lives they have RLS.  That injured back/spine is a poor conductor of the dopamine signal. 

    The iron I take only works for one night and has to be repeated with each attack.  Not only does the iron get rid of the RLS but it induces sleep.  One hour after ingestion I better be in bed.  I have awakened in the middle of the living room floor on more than one occassion.

    Supposedly, consistently undereating will "up-regulate" people's receptors.  Everyone, not just people with RLS.  So that might be worth trying.  Intermittent fasting (700 calories or less) is also supposed to up-regulate receptors.  Look at it this way, anything that causes pleasure, like food and cocaine (or dopamine agonists) will cause a release of dopamine but also down-regulates your receptors thus worsening RLS in the long run.  Fasting makes you hungry and angry and sends the signal to the brain that it better ramp up the size of the receptors because we need some of that feel good dopamine.  So agonists down-regulate and antagonists up-regulate.  Got that? 

    So many people have reported relief from magnesium that I had to do some research into it even though it never seemed to help me.  Turns out that magnesium assists in the production of dopamine...which we have plenty of, maybe too much.  And magnesium it sounds like is also a dopamine ANTAGONIST - meaning it STOPs the release of dopamine which is just the opposite of the dopamine agonists.  So maybe if you take magnesium in the morning (the kind that will cross the BBB) and you do it every morning your receptors will grow bigger???  Things that are dopamine antagonists (like fasting) have the indirect effect of increasing our receptors.  Better receptors means more dopamine travelling down our spines.

    Everyone's receptors get worse with age but we with RLS really feel that age related decline.  Also, everyone's circulating iron levels drop at night but we who are pre-disposed to RLS are the ones who really feel it. once again.

    On an addiction website I read that uridine monophosphate, which is found in mother's milk, is supposed to increase the size and number of our receptors.  I tried it on three nights over a course of two weeks and was left with horrible RLS each night, just like when I used to take melatonin.  I had to jump out of bed and take iron.  One night I had to repeat the iron a second time.  So that tells me that like magnesium, it probably stops the release of dopamine from our receptors which is a really stupid thing to take at night, but in the long run, and if taken in the morning may relieve the RLS.

    Iron is not a dopamine antagonist.  It feeds our receptors.  It gives our receptors what they need to release dopamine, provided that the iron crosses the blood brain barrier. 

    Well, don't take my word for any of this.  Recently the IRLSSG (international RLS something) had a conference in October 2015 and all the latest greatest info was presented.  Google it.  You will find the agenda.  In the upper left hand corner of the agenda there will be a link to the abstracts of the lectures.  Long and complicated but if you go through it little by little you will come to understand the devil among us and low levels of brain iron is a huge part.  I did not see any mention of magnesium or even diet.

    There was one article about our bodies release of a hormone called hepcidin when our bodies sense an invader.  Hepcidin is what I call the iron gate keeper.  When bacteria and other invaders are sensed, hepcidin causes the body to clamp down on the release of iron from our stores as well as stopping absorption from our GI tract.  I wouldn't be surprised if a major trigger or even the cause of RLS is an out of control gut microbiome - meaning our resident zoo animals.  Because our zoo animals constantly act up, our body constantly senses infection and hepcidin is released and iron is withdrawn.  The whole rest of the world with an out of control gut microbiome may never develop RLS but those of us with already low levels of brain iron just can't afford that further drop due to hepcidin.  Since no one as of yet has claimed to know what a healthy gut microbiome look like there is really nothing we can do in this area.  Taking probiotics may just make matters worse.  But it's something to think about and be hopeful for.  And maybe it's worth tinkering with.  Maybe that's why diet works for some people...because they are quieting down their zoo animals and allowing their brains to get a little iron.

    Well time for bed.  Be well and don't give up.

     

    Report / Delete Reply
    • Posted

      By the way, the reason the hepcidin causes a clamp down on iron is because every living thing LOVES and NEEDS iron to survive.  By clamping down on iron, our bodies are trying to starve out the bacteria or the cancer (which also needs iron).  It is quite a remarkable defense mechanism but if the high alert signal is always on then not only do some of us end up with RLS but others of us end up with what is known as "anemia of chronic disease." 
      Report / Delete Reply
    • Posted

      Thanks for sharing the results of your doing a lot of hard work.   I am a bit slow to react to suggestions like iron bis-glycinate. because I have been disappointed in the past with many cures.

      I tried Mg in the morning but it made the RLS worse and hence I finished up on the FODMAP diet as the only thing that helps.

      I also enjoy knowing that I am sleeping without paying any drug comapny for the pleasure.

      I will try the iron bis-glycinate. and then eat some unfriendly food to see if I can control it with iron.

      I always feel a risk when trying something new.   What if the RLS comes back and the FODMAP diet doesn't work anymore?   Against this a less restrictive diet would be a very welcome change.

      I have read of many peoples experience when they take drugs but when the drug's effect augments the RLS comes back worse.     You seem to have paved the way with the iron and have not yet had any problem like that.

      How long have you been using iron bis-glycinate?

      Do you pay any attention to your diet?

      Thanks Again

      Graham

      Report / Delete Reply
    • Posted

      Hi Graham.  At least 7 years now.  Diet I feel does play a role with me.  Its seems that asparatame and sugar alcohols (splenda for example) will provoke symptoms no different than Benedryl.  A large meal in the evening will weemingly provoke RLS many times (whereas in younger years such was not the case) and I'm not sure if it's sure quantity or a particualr food.  I truly believe that as we age we have to be ever more vigilant in up-regulating our receptors...be it consistently under-eating or intermittent fasting.  The iron has never failed me.  Before I knew melatonin is a trigger for RLS I was taking 1mg of it everynight.  When I upped it to 3mg I needed two iron tablets.  One wasn't cutting it and stupid me never made the connection that my RLS got worse right when I upped my dose of melatonin.  keep up the good work with your diet!
      Report / Delete Reply
  • Posted

    I've been through two tubs of Ferrochel, iron bis-glycinate chelate. No change in my RLS!

    I gather the FODMAP diet is most useful for cases where the problem is SIBO. According to "4 Little-Known Causes of Restless Legs Syndrome" it's not a good idea to stay on it indefinitely.

    Of course, iron deficiency arising from intestinal problems may indeed cause RLS in some people.

    Thanks for the IRLSSG reference Udon, very interesting to see what's going on.

    Report / Delete Reply
    • Posted

      Hi Robert.  You and I chatted before.  You tried taking your iron at mealtime with Magnesium and sometimes a protein shake.  The iron will NEVER work if taken that way.  It is unlikely to even be absorbed into the bloodstream let alone cross the BBB.  The magnesium basically cancels it out and the meal causes it to stay in the gut where it will not help your RLS.  If you feel the need to take the iron with something try vitamin c.  Plus you wouldn't take aspirin in the morning if your headaches were at night.  Same is true for iron.  Plus the world's iron level drops at night, not mealtime.  And we who are pre-disposed to RLS suffer for that fact.  If you're in an experimenting mood give the iron a try one night when you're suffering because you've augmented on the ropinerole.
      Report / Delete Reply
    • Posted

      At one time I was trying to keep the iron and zinc apart, never knew about a problem with magnesium. I also take melatonin before bed – tends to help me sleep more deeply, no difference to my RLS.

      The problem with experimenting is that if I don't take my ropinirole before my RLS starts, it can take two hours to take effect when I do take it, and if I let the RLS get too bad without the ropinirole it's more than my usual dose of ropinirole can do to shut it off.

      I take a minimum of about two or three hundred milligrams of vitamin C a day, generally after my main meal.

      If I don't eat my main meal until two o'clock or later, there's only about an hour and a half or less between then and when the RLS starts. [Usually, it's 2mg ropinirole between 15:30 and 16:00 and then again before bed.] Sometimes though I can be concentrating very hard on something all the way up to ten or eleven in the evening and it's only then, when I think about it, that the RLS starts.

      Report / Delete Reply
    • Posted

      You mention iron.  My iron levels were tested and they are "normal".  I know taking too much iron can be dangerous.  I periodically take 18 mg capsules but not to consistently.  Again concerned of taking too much.  I have severe rls and augment on everything eventually.  How do you know you are not taking iron at a level that can be dangerous.  How much do you take at a time?  Magnesium and iron together?  Any other ideas?  Thanks
      Report / Delete Reply
    • Posted

      No, never magnesium and iron together.  Iron by itself, on an empty stomach, during an attack or an hour before bed.  For me it has to be iron bis-glycinate, one pill (25 mg).  I tried the drug store kind, ferrous sulfate, and it did not do the trick.  I believe the trick is first, the iron has to enter your bloodstream and then has to cross the blood brain barrier (BBB).  Our brains are anemic, not our bodies.  The more the iron pill is broken down to its most elemental components, the more likely it is to cross the BBB.

      I read about iron at night years ago on the internet.  Somehow I feel that I and this other person are the only two that get relief from RLS with that first pill.  My RLS is mild and intermittent and I never took any of the agonists so I have no idea if it would help someone that has been on them.  It might take two iron pills. 

      This is what I tell everyone who asks - spend $10 on Amazon on iron-bisglycinate (one brand name is "Gentle Iron" and another is Ferrochel).  When you get an attack, or your meds just aren't cutting it, take the iron (on an empty stomach preferrably) and wait one hour.  If your RLS isn't completely gone take one more pill.  One or two iron pills, on one occasion, should do no harm.  If it works and you want to keep taking it then talk to your doctor.  If it doesn't work you can probably still take it once a day at night until the bottle is empty.  Most people believe that it  takes several weeks, if not several months, of iron consumption to see an improvement in RLS symptoms.  I am the only one I know that takes iron for RLS the way you take aspirin for a headache.  You wouldn't take an aspirin in the morning if you tended to get headaches at night. 

      Report / Delete Reply
    • Posted

      Iron tends to accumulate in the brain as we get older, I read, and iron-induced oxidative stress there can cause neurodegeneration. It is difficult to know what to conclude.

      If you do take extra iron, whether on its own or with food and other supplements, you should look in to taking extra zinc and copper as well (and I guess magnesium). Taking extra of one of these can prevent adequate absorption of the others.

      You are in a way lucky if iron helps your RLS. Supplementation with it helps very few of us. We should all probably make sure we are getting enough of it though.

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up