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.

Hello 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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@transom

I 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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That's great to hear, @transom — we'd love to have her.

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There 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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@dizzydaisy

There 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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Hi @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

Liked by Lisa Lucier, barbarn

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@transom

I 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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Hi 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

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@dizzydaisy

There 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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Fellow sufferers of RLS – everytime I sit down to relax my one leg goes crazy with pain and/or movement!!! Fortunately/unfortunately all my problems at this time seem to be localized on one side. I bought a little tens unit one day while shopping at Target – "impulse buying" at the extreme! But it's one purchase I LOVE!!! Made by Icy Hot,It has adhesive pads so you can place wherever you think you need the relief, but I have found that closer to spine is best for me. (It comes with decent instructions). It is battery operated, runs on CR2032 batteries. i do turn it on before I place it on my back as it's a little difficult to find and start with 'old' fingers. There are + or – buttons to push, I have found it necessary to push the + button several times to get it to where I can feel the electrical current. If you want less current push the – button, but for me I want all the current it has!! More drs need to know about this! I went to the Amazon site today and was amazed at how many different tens units there are for sale! And you can read the reviews there! And shop for the best prices!! I do take prescription meds, but when all else has failed, this little unit has saved me!!!

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@dizzydaisy

There 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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@dizzydaisy what study on RLS is Mayo doing?

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I read about it on Mayo website, I think??? I live in MO and Mizzu is recruiting for a study. I haven’t went too far on reading more yet. I have an old Tens (with all the wires and it’s annoying to wear around. I’ve have seen the one your talking about. I may have to invest in one now. I have very good relief with the Lidicaine patches. I buy the small ones and put them where it’s needed. I may have 6 on my butt, hips, tailbone, leg, neck!!! Any where it hurts!!

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@dizzydaisy

There 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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Hi, @barbarn — here is one currently enrolling Mayo Clinic study on RLS: https://mayocl.in/2KiIPWO

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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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You go girl! My gin is already in the tonic!!! Amazingly enough, it didn’t do much!

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I am curious…how does your RLS act? My RLS spells are off and on. It used to be only at night, but now, I usually have a spell in am and one in pm. The spells can last 30 min to 3 hours. I can feel the sensation start and grap the oxy & requip. I also have bad SI joint problems that causes a severe burning sensation. When that starts so does RL. Also have 5 cervical fusions and 4 lumbar fusions. Has anybody out there considered medical marijuana? Not legal in MO., but I would try it if I could. Any of you have pain stimulators? That’s probably a different group.

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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

@dizzydaisy Oh, to be able to have an alcoholic beverage now and then, particularly wine with dinner. I really miss that. I'm not sure if us post-transplants patients cannot drink due to fear it will cause liver damage, even when our problem was not alcohol, or if it's not good with immunosuppressants. I don't see my transplant doctor again until December, I will have to ask him then, even though I know it won't change anything. The nurse who is currently the go-between is not that useful unfortunately.
JK

Liked by barbarn

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@dizzydaisy

I am curious…how does your RLS act? My RLS spells are off and on. It used to be only at night, but now, I usually have a spell in am and one in pm. The spells can last 30 min to 3 hours. I can feel the sensation start and grap the oxy & requip. I also have bad SI joint problems that causes a severe burning sensation. When that starts so does RL. Also have 5 cervical fusions and 4 lumbar fusions. Has anybody out there considered medical marijuana? Not legal in MO., but I would try it if I could. Any of you have pain stimulators? That’s probably a different group.

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OH my! You have had a LOT done to your spine!!! Just wanted to tell you – medical marijuana is available in Colorado. It might be worth trying. It has been helpful with children that are epileptic, so it certainly might help you, given that it all your problems probably originate in your spine. Do you have a dr that you could talk to about using marijuana?

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Guess I could relocate!! I love the mountains. My Mom’s busy friend from grade school lives in Oregon…she said she’d take me in…something to consider…….

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I’m at stage 3B kidney disease and I have restless leg syndrome. Anyone else have that?

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