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Restless Leg Syndrome
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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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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3 ReactionsHi @stigmatized. I realize your post is nearly two years old and was just wondering if you are still visiting Connect and just not posting? Have you found anything that relieves your RLS? If so, there are many here who like you get no relief from gabapentin and would love to hear any ideas that have helped others. I have learned in my time here, that there is a tremendous knowledge base among the members and it is often far more valuable than a google search.
Gary
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3 Reactions@barbarn, we learned the hard way that the wired effect was what happened with our oldest son. The only people needing sleep after giving it to him for allergy problems were me and my wife. He would have not been as hyper with a bag full of gummi bears! You are spot on about how everyone reacts differently to drugs and gene mapping is helping us understand exactly why.
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1 ReactionI have only taken Diphenhydramine Hcl (Benadryl) for allergy purposes, @barbarn -- it's like my rescue medication if I have an allergy "attack" that goes above what my usual allergy medications can relieve. I have experienced the same thing as you -- I've been wired and wide-eyed for hours after taking it, though many people report sleepiness.
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1 ReactionI have a relative that suffers from RLS. I am going to share the many tips I have read in this string with her, and suggest she join Connect. 🙂
Thanks, all!
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1 ReactionHello Treasure (@transom) -- Welcome to Mayo Connect and THANK YOU for inviting your relative that suffers from RLS to join Connect. Connect really is a great and safe place to ask questions, share your health concerns and find out what others with similar health problems are doing for treatments.
John
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2 ReactionsThat's great to hear, @transom -- we'd love to have her.
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1 ReactionThere has got to be a nerve (that is worthless) they can snip and make RLS go away. I fight this everyday and getting aggravated as over the years it just keeps getting worse, like the neurologist stated. I am contemplating a pain stimulator, as I have other aches too. I really doubt it works. I am also checking into Mayo’s RLS study. Desperately wanting help!
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2 ReactionsHi @dizzydaisy -- Welcome to Connect. I'm glad you found us. I'm with you on snipping a worthless nerve if there was one. I think all them little guys have a specific job to do but sometimes they are damaged, broken or pinched and do all that "miss-firing' that gives us the pain. I'm tagging @barbarn who also has posted about RLS and using one of those gizmos to reduce or remove the pain.
@barbarn can you share how the TENS unit helps you with your RLS?
John
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2 ReactionsHi Treasure (@transom), I'm curious about what brought you to Connect. Would you mind sharing how you found us? Was it to help your relative that suffers from RLS?
I found Connect while searching for answers to find something that helps with numbness for my small fiber peripheral neuropathy and was amazed at all the different stories of people searching for answers and looking for help. And I'm even more amazed at how the members of Connect help each other.
Thank you!
John