Restless Leg Syndrome

Posted by jimbourg8 @jimbourg8, May 14, 2016

I started having this burning feeling in certain pressure points in my body. Mostly on the elbows, under forearms mostly on my left side ….mostly worse in the late afternoon and evening. It’s usually burning and/or uncomfortable feeling when I am sitting down on couch or chair. the burning sensation like I said on pressure points of the elbows, legs, or butt when sitting even if only 2 mins or so and seems like I can’t remain still…….upon getting up and moving around it relieves the sensation. Went to neurologist 4 years ago……….he confirmed that it was Restless leg syndrome…………there are different types of RLS but the classic symptoms are a feeling of burning, tingling, and a general sense of unable to relax when quietly sitting or even laying down and relief comes when changing position and/or getting up. Diagnosis is by symptoms….there is not a definitive diagnostic test………all bloodwork etc…. is normal . I now take Gabapentin, and Klonopin to calm the “restless” nerves………..there is no cure for this ( my Neurologist says )……..It’s just something you have to learn to live with and take those medications for it……….It is believed there is a link between low iron (which I had) and and RLS . Now I take more iron (but that does not alleivate the symptoms so far . ( even when iron level becomes normal ) . I was diagnosed with low thyroid 5 years ago and started taking the levothyroxine to put my thyroid back to normal which it IS NOW. But even though I still have the RLS……..there is a possiblity that I had LOW thyroid for years before I was diagnosed with it……..hence I think (my theory) the RLS evolved due to the years of LOW thyroid. This is just my thinking on this. No Dr. Told me of that…..anyways I hope maybe this helps others and they can begin to pinpoint their symptoms and get a diagnoses.
I would love to know others with RLS and how they have dealt with it over the years. It seems to be a tricky act to balance the medications with side effects and still manage the RLS……..appreciate any feedback. Thanks Jim B.

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@vickiekay

Try drinking Tonic Water….my Mayo doctor suggested a “gin and tonic
without the gin”! The quinine in the tonic water WILL take the jitters away
from the restless leg syndrome. I think that the tonic water tastes bitter,
so I mix it with crushed ice and a little fruit juice, such as cherry juice
or orange juice. It is AMAZING how much it helps after drinking a glass
every day. I use regular, not diet, tonic water. Best wishes!

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I am interested in how much tonic water you need to drink? The diet has aspartame which is not good. But 12 ounces has 32 grams of sugar. Just curious. Thanks.

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It can be an inherited disorder. In my case, my grandmother had a terrible case of it. My doctor checked my “feratin” level which is a bit different than your iron level. You need to check specifically for it. Milne was a low normal so he has me taking Vitron-C which is over the counter. I take it 3 times a day with food always. I am also drinking tonic water several times a day. The last two nights I have not been bothered, but we shall see if that lasts. I also have hypo-thyroidism which my doctor tests for often. I only take Synthroid however. I have found whenever I used the generic, my results were not normal. But that is me. I also started using a heating pad before going to bed, resting my legs on it. When you are unable to get a good night’s sleep, it is so discouraging and wearing physically. It. Is good to know we are not alone in this

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@vickiekay

Try drinking Tonic Water….my Mayo doctor suggested a “gin and tonic
without the gin”! The quinine in the tonic water WILL take the jitters away
from the restless leg syndrome. I think that the tonic water tastes bitter,
so I mix it with crushed ice and a little fruit juice, such as cherry juice
or orange juice. It is AMAZING how much it helps after drinking a glass
every day. I use regular, not diet, tonic water. Best wishes!

Jump to this post

How much tonic water do you drink? I am currently taking Vitron-C because my doctor said my Ferratin level was a low normal. There is a lot of sugar in tonic water so curious how much I should be drinking.

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@vickiekay

Try drinking Tonic Water….my Mayo doctor suggested a “gin and tonic
without the gin”! The quinine in the tonic water WILL take the jitters away
from the restless leg syndrome. I think that the tonic water tastes bitter,
so I mix it with crushed ice and a little fruit juice, such as cherry juice
or orange juice. It is AMAZING how much it helps after drinking a glass
every day. I use regular, not diet, tonic water. Best wishes!

Jump to this post

@vickieay hi there. I was told to drink tonic water for my severe muscle cramping. It works somewhat

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@gaylea1

@vickieay hi there. I was told to drink tonic water for my severe muscle cramping. It works somewhat

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@gaylea1 I hope you can get some relief from those miserable cramps. I kept some tonic water close by in my bedroom and drank some when I had those cramps. I really was never sure if it helped or not, but I kept drinking it, just in case it did.
JK

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@AT2008

I dealt with RLS as well the only treatment that truly helped eliviate & eliminate the symptoms of RLS for me ultimately, was hypnotherapy.

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I've been interested in hypnotherapy as a treatment for RLS! Our osteopath in our rural community used this approach on me when I was young, and it worked (almost like magic). However, I've had difficulty finding a practitioner, and I would like to make sure who I consult is a reliable and licensed treatment provider. I've run into people who advertise they are knowledgeable and 'hang out a shingle' but they don't have any formal training.

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@gman007

Hi @barbarn. I have always seen in research that quinine which is an ingredient in true tonic water is somehow beneficial to many with RLS and also may help some folks with leg cramps which I have every night for the first couple of hours after laying down. I used to enjoy it with gin, but now as a teetotaler, I have to be content with a twist of lime.

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I've learned that caffeine and alcohol or any type or in any form, if I consume it after 3:00 p.m., severely increase my restless legs at night to the point that i am unable to fall asleep until 4:00 or 5:00 a.m. the following morning. I tried tonic water also since I was told that it could help (but not by a doctor), but it didn't help me at all. If someone is having trouble with RLS at night and are consuming alcohol, perhaps that might exacerbate their symptoms. (My doctor at the Sleep Center confirmed that this is possible when I mentioned it to her.)

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@lknightb

I had my knees replaced too. That's why I originally bought the bike. I ride it for 30 minutes also but when the restless legs start up I get back on for about 10 minutes. What a blessing it is to have.

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What a great tip – I have never tried a recumbent bike — I have been up all night walking, and I mean literally all night until 6:00 a.m. at times, and since I've had several back surgeries – walking that much can become painful. A recumbent bike would be a nice relief. Is there a particular one that you like better than another?

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Hi, there – several of you were talking about things you were trying to relieve your restless legs syndrome (RLS). It would be great to hear how those are working for you and whether you are getting relief. I'm sure others in this discussion would benefit from your experiences.

@nightwalker – how is the iron supplement with the Vitamin C working for you? Have you found that the tonic water and heating pad are helping with your RLS?

@degarden_girl – you mentioned Vitamin D. Is that something you are using for your RLS? If so, has it made a difference for you?

@dolly715 – did you end up trying the tonic water and vitamin D? If so, how did that go?

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@lisalucier

Hi, there – several of you were talking about things you were trying to relieve your restless legs syndrome (RLS). It would be great to hear how those are working for you and whether you are getting relief. I'm sure others in this discussion would benefit from your experiences.

@nightwalker – how is the iron supplement with the Vitamin C working for you? Have you found that the tonic water and heating pad are helping with your RLS?

@degarden_girl – you mentioned Vitamin D. Is that something you are using for your RLS? If so, has it made a difference for you?

@dolly715 – did you end up trying the tonic water and vitamin D? If so, how did that go?

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@lisalucier The vitamin D at 4000 iu per evening totally controls my restless leg syndrome. It does not control Periodic Involuntary Limb Movement (PILM) which only "kicks in" literally, when I take Ambien to sleep. I can get away with about 1/4 to 1/3 of a 10 m tablet but more than that and my feet are flapping away or my legs kicking. Same effect with Benedryl. So I try to avoid these medications as much as possible and when necessary, take the lowest dose possible.

PILM is different than RLS. With RLS, there is a compulsion to move ones legs. With PILM, the legs just move independent of any sense of compulsion or that it is going to occur.

My mother had RLS and so far, three of her six daughters have developed it and all three of us find the vitamin D handles it. I wish I had known this when my mom was suffering so. It is a terrible condition with such a benign name.

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@degarden_girl

@lisalucier The vitamin D at 4000 iu per evening totally controls my restless leg syndrome. It does not control Periodic Involuntary Limb Movement (PILM) which only "kicks in" literally, when I take Ambien to sleep. I can get away with about 1/4 to 1/3 of a 10 m tablet but more than that and my feet are flapping away or my legs kicking. Same effect with Benedryl. So I try to avoid these medications as much as possible and when necessary, take the lowest dose possible.

PILM is different than RLS. With RLS, there is a compulsion to move ones legs. With PILM, the legs just move independent of any sense of compulsion or that it is going to occur.

My mother had RLS and so far, three of her six daughters have developed it and all three of us find the vitamin D handles it. I wish I had known this when my mom was suffering so. It is a terrible condition with such a benign name.

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@degarden_girl I find this fascinating, as I too, was diagnosed with RLS. But I don't just have the compulsion to move my legs, they DO move about all on their own, throughout my sleep. I also have sleep Apnea, but my machine is broken. So I must get another appointment with the sleep doctor. Interesting to hear about the Vitamin D. Interesting too, that many doctors don't want us to take supplements that we are actually deficient in. Good luck and let us hear back how you are getting along, won't you?

Mamacita

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@mamacita

@degarden_girl I find this fascinating, as I too, was diagnosed with RLS. But I don't just have the compulsion to move my legs, they DO move about all on their own, throughout my sleep. I also have sleep Apnea, but my machine is broken. So I must get another appointment with the sleep doctor. Interesting to hear about the Vitamin D. Interesting too, that many doctors don't want us to take supplements that we are actually deficient in. Good luck and let us hear back how you are getting along, won't you?

Mamacita

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@mamacita My Vit D wasn't deficient before and is still very much within normal range so not at all sure why the Vit D controls RLS. Both RLS and PILM complicate the whole sleep thing. From what I understand, RLS occurs when we are just falling asleep. I wonder if your sleep Apnea has you "falling asleep" frequently through the night, especially now that your machine is broken. You might try the Vit D and see if that helps calm your legs. It certainly was an easy solution for me. I had MDs prescribing medications usually used for Parkinson's disease and they made me so sick.

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