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.

@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 got the same thing but I have asthma and taking NUCALA shots every thirty days but also I have a lower disk that is worn out on one side and it pinches my nerve too plus other problems I just cannot get used to my BIPAP at all and that does not help matters

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I find that caffeine and sugar both greatly exacerbate my RLS, so avoid both whenever I can. Does anyone else have any foods that worsen symptoms?

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I've also found that sometimes (but not always so maybe there is no direct correlation) too much sugar, too much salt, or both can make it difficult to fall asleep and can make symptoms more pronounced.

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@suecreader For me when I don't have enough Potassium I get RLS

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@lioness – I do take a multi-vitamin and that has some potassium in it. Do you take one too and then add a potassium supplement? How do you know you're low or do you just know by how you feel? I'm taking extra Vitamin D tonight as @barbarn suggested.

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once l started taking meds for my depression and panic attacks, my went away and never came back, cymbalta

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@suecreader

@lioness – I do take a multi-vitamin and that has some potassium in it. Do you take one too and then add a potassium supplement? How do you know you're low or do you just know by how you feel? I'm taking extra Vitamin D tonight as @barbarn suggested.

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@suecreader Good morning No one really knows how much Potassium we need as we are all different in body weight ,but if you get a full panel of blood work in your minerals that should tell you if your low in a vit-min.Our bodies building blocks our minerals mostly ,calcium, magnesium , potassium those you can't get a quality amount in food even though the different food gives us all vit-min,some people need extra so supplement with a good Vit-Min.For Potassium they tell you to eat bananas Yes your body will let you know For me I take a Magnesium,Calcium,Vit D3,Vit K Potassium at night to prevent RLS .

Liked by barbarn

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@lioness

@suecreader Good morning No one really knows how much Potassium we need as we are all different in body weight ,but if you get a full panel of blood work in your minerals that should tell you if your low in a vit-min.Our bodies building blocks our minerals mostly ,calcium, magnesium , potassium those you can't get a quality amount in food even though the different food gives us all vit-min,some people need extra so supplement with a good Vit-Min.For Potassium they tell you to eat bananas Yes your body will let you know For me I take a Magnesium,Calcium,Vit D3,Vit K Potassium at night to prevent RLS .

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@lioness-thanks for clarification. It’s obvious you know your body well, & you have an excellent command of the medical field so I appreciate your input. I do have a full panel workup annually & sometimes a couple of times per year. Right now I take extra magnesium tablets at night, & I think that helps a bit too, But I don’t think it’s a complete answer. I think it’s an individual thing as you’ve noted too, but trying to put all that together and apply it to my individual body is sometimes something of a mystery. Trial and error seems to be the only way to find out what works and what doesn’t. I do know that despite the doctor continuing to check my iron (specifically ferritin levels) even when it’s been at its highest level, my symptoms are still just as prevalent as when it’s low.

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Good morning, I have also found that when my legs are swollen, the RLS is worse. I asked for an additional dose of diuretic and my legs aren’t swollen any more.

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@suecreader

@lioness-thanks for clarification. It’s obvious you know your body well, & you have an excellent command of the medical field so I appreciate your input. I do have a full panel workup annually & sometimes a couple of times per year. Right now I take extra magnesium tablets at night, & I think that helps a bit too, But I don’t think it’s a complete answer. I think it’s an individual thing as you’ve noted too, but trying to put all that together and apply it to my individual body is sometimes something of a mystery. Trial and error seems to be the only way to find out what works and what doesn’t. I do know that despite the doctor continuing to check my iron (specifically ferritin levels) even when it’s been at its highest level, my symptoms are still just as prevalent as when it’s low.

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@suecreader Thank you I have and still study about herbs ,Vitamins,Minerals,herbs now essential oils .I am a retired nurse and only tell what I know and have experienced myself. @hopeful33250 just turned me onto Tai Chi never did it before but found it is helping me. ,so we can all learn from each other as @mamacita said we are better together

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@pcka

I have had severe restless leg syndrome for 30 plus years. I’m taking Parkinson’s pills and gabapentin for nerve pain. Neither drug is working any more I’m at the point that I hate going to bed, it also is severe when I sit or lay on couch. Has any one tried stem cell therapy for treatment? Thanks for replies

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@pcka: I have heard of people using stem cell for treatment of shoulder & back pain. In both cases they went somewhere in CO but I don’t remember where. Those two people swear by results, but pain dr and Ortho surgeon advised it was expensive & largely ineffective. Difficult to know what to believe. I sympathize with you though..,.I’ve about run through the gamut of drugs available. Right now I’m taking Neupro but it’s effectiveness is wearing off & it has side effects that aren’t great: dizziness, headaches, memory impairment & they’re pretty expensive. I know I offer no solutions, but I hope you get some relief and soon. It is life-altering isn’t it?

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@lioness

@suecreader Thank you I have and still study about herbs ,Vitamins,Minerals,herbs now essential oils .I am a retired nurse and only tell what I know and have experienced myself. @hopeful33250 just turned me onto Tai Chi never did it before but found it is helping me. ,so we can all learn from each other as @mamacita said we are better together

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@lioness: Tai Chi is something I’ve considered,but I haven’t really explored yet. I used to love yoga but can no longer twist due to two lumbar surgeries. Thanks for this tip

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@suecreader

@lioness: Tai Chi is something I’ve considered,but I haven’t really explored yet. I used to love yoga but can no longer twist due to two lumbar surgeries. Thanks for this tip

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@suecreader That is why I don't either it hurts my back to do Yoga but I love Tai Chi it only uses your breath and arm movements so easy . I just go on You Tube there are so many .Hope you feel alright

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@suecreader

@pcka: I have heard of people using stem cell for treatment of shoulder & back pain. In both cases they went somewhere in CO but I don’t remember where. Those two people swear by results, but pain dr and Ortho surgeon advised it was expensive & largely ineffective. Difficult to know what to believe. I sympathize with you though..,.I’ve about run through the gamut of drugs available. Right now I’m taking Neupro but it’s effectiveness is wearing off & it has side effects that aren’t great: dizziness, headaches, memory impairment & they’re pretty expensive. I know I offer no solutions, but I hope you get some relief and soon. It is life-altering isn’t it?

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@suecreader When the pickle juice doesn't work I have a prescription for Mireplex or Primiplexil generic I think its called it does work for my RLS

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@lioness

@suecreader When the pickle juice doesn't work I have a prescription for Mireplex or Primiplexil generic I think its called it does work for my RLS

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@lioness: Thank you so much for this information. Your response and feedback came at such a good time. I remember now, but had forgotten, that you mentioned taking the Parkinson’s drug Mirapex. I didn’t know there was a generic form so that’s encouraging, since the Neupro patches I’m now using is expensive. I’m beginning to have breakthrough symptoms at night with that horrible restless feeling. I’m just back from a trip to Mayo where I had an appointment with my sleep doctor. Recommendation is for me to take another 300 mg pill of gabapentin right at bedtime. I know that gabapentin can be successful, but while it can kind of stave off symptoms, I’m not all that confident that this will work. But, I am hopeful. I’ll make a note though of Mirapex just in case so I can suggest it to the doctor at my next appointment.

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