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Things I have tried and how they went.

Posted , 27 users are following.

graham9772
graham9772

I suggest a discussion where we limit ourselves to as brief as possible statement of "I did this and the result was...."   the reader can then look up other discussions a sort of brief index or summary.  

It might be good if the forum administrator can pin it to the top of the lists.

I will start with my next post.

 

4 likes, 46 replies

46 Replies

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  • Srahjayne17
    Srahjayne17 graham9772

    Posted

    I bought Vitamin D drops and sprinkle it on my food in the morning. I also put Magnesium drops in my water and it has helped me tremendously. 
    • graham9772
      graham9772 Srahjayne17

      Posted

      Hi Srahjayne

      Im not familiar with magnesium drops.   Can you describe them a bit more specifically please?    Perhaps just the active ingredients?

      I have tried Mg powder and tablets which seemed to produce RLS but a l;iquid form might work better.

    • Srahjayne17
      Srahjayne17 graham9772

      Posted

      Hello Graham, sure I just did an amazon search and I found them.

      Emis Moderator comment: I have removed the link as users can find the information by searching Google/Amazon for magnesium drops.

    • Srahjayne17
      Srahjayne17 graham9772

      Posted

      Something else my soon-to-be mother-in-law told me is to drink tonic water. It has some type of mineral in it that soothes the nerves. It sounds crazy, but it works.
    • Srahjayne17
      Srahjayne17 Valspal18

      Posted

      You can just do an Amazon search for them. Honestly, I combine a number of things to relieve my RLS - Vitamin D drops, magnesium drops in water, tonic water, and my doctor prescribed me Clonzapam which helps put me to sleep but I only need to use occasionally (I used to have to take it every night!) I have found that combining all of those things has helped. I still get flare ups every now and then but with this disorder, its really an individual trial and error rolleyes
  • Guest
    Guest graham9772

    Posted

    I have recently been taking Shuessler Tissue Salts No.8 Magnesium Phosphate.This is in addition to Ropinarole and they have given me significant relief from the RLS twitching and cramps, particularly in the evening, I do not have RLS problems during the daytime.
  • aburdette211
    aburdette211 graham9772

    Posted

    I have had RLS since I was 22 and it became very severe, went to the dr and my potassium was low so I started taking potassium vitamins and it didn't go away, so I added magnesium after researching and it completely stopped, it was great. But Jan and Feb I had a vein burnt out of each left from Chronic venous insufficiency, and I have raynauds phenomenon so my legs started again but much much worst and tried Mirapex, ropinarole, sinemet, and neurotin and all made me severely sick, projectile vomiting. Any other medicine I can try?
    • graham9772
      graham9772 aburdette211

      Posted

      Dear Aburdette

      You will see in many conversations in this forum I have been recomending the Monash University developed FODMAP diet.    It has been the only thing to work for my severe RLS.See the link

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

      I would like as many people as possible to try it out by following it rigoriously for 12 weeks and letting the rest of us know if it works for you. 

      You dont pay anyone for the diet.    Its freely available at several websites.    The foods are normal and not expensive

      I heard an RLS expert from a major hospital on talk-back radio recently   So I rang to discuss the FODMAP diet with him and he dismissed me rudely because he "Knew" that only the super expensive drugs form the big pharma companies could possibly help anyone.   The drugs may do you no good but you can be comforted to know that a lot of shareholders are greatly comforted.;

      So if you try it please let me know so I can get a guide to its effectiveness and if it usually works there must be hundreds of people we can help.

      I should say that some people get full relief from the normal pharmaceuticals and I can only say good luck to them.

      I would really love some researcher to decide to investigate.  The usual story is "No drugs then how do you monetise it even if it works"

      Give it a try but get a bit of help from a dietician because there is a danger of malnourishment.

      Cheers

      Graham

  • robgau
    robgau graham9772

    Posted

    Graham,

    ​Would you mind posting a list of what your personal diet currently consists of? I'm currently on the Trim Healthy Mama program with my wife to support her. I really don't need to lose any weight at 140 lbs but omitting sugar, white flour, french fries and those types of things is a good idea for my RLS anyway. I take .25mg Requip everynight and some B12. It works fairly well. I try to eat spinach in the evenings if I can convince myself to do it. It's not my favorite food. Also try not to eat after about 7 or 8 o'clock at night. I definitely believe RLS can be controlled with diet. It's just VERY hard to be strict enough. There was a time 20 or 30 years ago when I was on a healthy kick where I was pretty much only eating steamed vegetables for a week or 2 and found there were nights I went to bed laying on my back and woke up in the same position in the morning feeling refreshed. I can't say that I ever experienced anything like that before. That was back in my single days. Now that I'm married with 3 kids, it's much harder to follow a restrictive diet. Just wondered what you eating and what you were avoiding to see if I could make any connection.

    Thanks,

    ​Robert

    • graham9772
      graham9772 robgau

      Posted

      Hi Robert

      I am happy to do this but a bit busy today so will probably be tomorrow.

      In the meantime have you checked out the Monash University web site?   I have put a link here https://patient.info/forums/discuss/restless-legs-and-diet-372883

      There are also other web sites at stanfordhealthcare in the states.  I will make sure there are liks to these under "Diet and RLS"   If I put in a link here the moderator has to check it out to ensure I am not posting advertisements and so the post is delayed by a few days.

      There is also a site in the UK somewhere, I think London bridge hospital.

      Have a look at Monash anyway and I will get back.

      I have to warn you that it hasn't worked out fantastically for me because I am having trouble re-introducing real foods again.   This is not a problem with the FODMAP diet but idicates that my body is not tolerant of lots of things.    I have to live with the body I have so I am delighted to restrict myself to foods that allow a good nights sleep.   There is a good chance that a diet that works for you will be not very restrictive at all.

      See you soon

       

    • graham9772
      graham9772 robgau

      Posted

      Dear Robert

      I posted something but I think it got lost.  Apologies if I am about to repeat myself.

      The linkin the previous post has  a fault because some bug in the software adds a space and colon  Here is the correct address.  This is not a link so you have to copy and paste it in your url line.

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

      just make sure that it ends with a number 3 with nothing following

    • graham9772
      graham9772 robgau

      Posted

      Hi Robgau

      My current diet.  I dont recomend this but I am a bit lazy and a bit scared to move from what works.   I strongly advise you to keep a list of allowable FODMAP foods and try to get the widest range possible.   Keep a food diary so you might be able to trace a problem.

      Note that I eat a lot of rice cakes.  That's OK in Australia with Australian made rice cakes but I have been warned that rice cakes from some sources contain excessive arsenic.   I will try to find out more about this and post it or if anyone else knows where the bad rice comes from please let me know.

      Tea and coffee are decaffinated and with lactose free milk.

      I can buy a tasty FODMAP friendly bread but despite its name more than 6 slices upset me so I limit myself to two per day.  On Bread and rice cakes I eat peanut butter, cheese ( vintage chedder, other hard aged cheese, brie or camembert) and lemon butter (lemon curd)

      The3re is also one brand of jam that I know I can eat.  Its French and the label doesn't say that it contains any fillers.   In Australia its common to add apple or pear to jams because they are often very cheap and still allow that 100% fruit label.   Of course apple and pear are not allowed.    Again there is something in the jam I think because too much seems to be not so good.    So I limit myself to two serves of jam.   The marmalade is good because its only needs lemon and orange but the strawberry and the rasberry both seem to be safe for this amount.

      I know I can eat a few fruits so I mix them up a bit.  Where I say an orange I might decide on a kiwi fruit or half a tin of pineapple slices.   Some times of the year rock melons (Cantelopes) are worth eating and these are allowed.

      I snack on walnuts and almonds between meals

      As a sugary treat I eat crystallised ginger but I know it must be bad for me.

      I know there are a lot of foods that are low FODMAP but I leave out.   It just feels like too much effort to experiment too much and I hate being awake all night.    I can see that my present diet is not very good so I will be expanding it "soon"

      Breakfast is usually

      One orange or mandarin  Depending on availability

      One banana always.

      A couple of thick rice cakes withy peanut butter.   If I'm hungry then I might have two fried eggs and perhaps several rashers of bacon.

      Lunch

      At home.

      Two slices of FODMAP friendly bread with vintage cheddar cheese, camembert, brie or peanut butter,  Sometimes I have ham and lettuce and some more rice cakes.     After the meal I will usually have another orange/mandarine

      If I still need a nibble I will have a carrot or two.

      If I am out working or something for the day I get by with a couple of oranges and a couple of bananas in my lunch bag.    I include some decaf instant coffee in my lunchbag

      Dinner

      usually meat,   I try to keep beef down to three nights a week but its very convenient to just throw a chunk of meat on the grill or frypan..  There is always chicken (some people can't eat it if it has been stuffed)  ham bacon and fish.

      For veges I have potatoes, carrots, Bok choy.

      Several times a week I have rice with Capsicum.   I boil some rice and then fry one capsicum cut into small pieces with a cut up tomato with a pinch of chilli and add the cooked rice to the fry pan and stir it all up for 5 minutes.     Sometimes add an egg into the mix.

      Sometimes for desert I have rice with maple syrup poured over it.  Usually just some allowed fruit.

      Dining out is really tricky.  Onions and garlic are just so universal as flavourings.   A lot of chef's dont believe anyone needs to be so fussy and I'm sure I am often lied to.     I am lucky in that if I make a mistake I only lose one or two nights sleep - others have a much worse reaction.   Remember a lot of people put flour on chips to make them fry crispier and often the kitchen staff dont know about it because they come already floured in a bag.

      Rissottos are a good choice if you can convince the chef to leave out the onion and garlic    Of course there is always steak or fish with no gravy or sauce  with veges   Expect to have to negotiate the veges in detail.  Nothing wrong with good old bacon and eggs for dinner, especially if you can get it on gluten free toast.

      This works for me.

      Cheers

      Graham

  • Srahjayne17
    Srahjayne17 graham9772

    Posted

    Oh! Something else I've been taking regularily that has helped is Concen Trace Mineral Drops. You can also find this on Amazon. It takes a week or so to build up in your system, and it tastes gross at first, but it has helped me a lot.
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