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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I have been rolling out my leg muscles with a hard foam roller before bed. It works!

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Just two quick ideas….I have some good results with 1) Alka Seltzer Gold – available from Amazon – it resets the pH level in the body; and 2) Tonic water with quinine to help the restless legs. I like to add a little fruit juice to sweeten the sour taste. Both of these seem to help with the shakey quivers that I get due to RD and CRPS. Best wishes…

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@julchilds

I have been rolling out my leg muscles with a hard foam roller before bed. It works!

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Hi, @julchilds — welcome to Mayo Clinic Connect. Thanks for the tip about using a hard foam roller to roll out your leg muscles before bed.

What has been your history with restless leg syndrome? Is this something you've had for quite some time?

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@julchilds

I have been rolling out my leg muscles with a hard foam roller before bed. It works!

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I think I’ve always had restless legs. I am also a terrible sleeper,very restless, easily awakened and not so easy to fall back asleep, (although I fall asleep heavily as soon as it gets dark). I realized recently how well I slept if I rolled out my legs, and back, sometime before bed. Drugs are not an option for me, I have a delicate balance going on here, so I was happy to discover this. I hope it keeps working.

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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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Hi, @pcka — just wanted to touch base and see how you are doing and how it's going with the restless legs syndrome? You'd mentioned your gabapentin and Parkinson's pills weren't working for this and sounded like you were interested in STEM cell therapy.

Wondering if you did try the stem cells?

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I have it too. I take requip and sometime tramadol. If the legs get really bad I have to get on my exercise bike for at least 10 minutes. This really seems to help. The bike was the best thing I ever bought to help relieve the symptoms of this horrible syndrome.

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Hi, @lknightb — that is very interesting about your bike routine that helps with your restless legs syndrome (RLS). I thought you might like to meet some others who have talked about Ropinirole (Requip), like @peggyj4411 @kyjeanne @beho @painwarrior @emilyanne @rabbit10 and @lynsorensen, so you can compare notes on using this medication for RLS. @johnbishop may also have some thoughts.

@lknightb — have you experienced any side effects from the Ropinirole (Requip)?

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Hello @lknightb — I don't have restless leg syndrome but have had severe cramping in my legs with my small fiber peripheral neuropathy sometimes when I don't drink enough water. Staying hydrated is pretty important for most autoimmune type disorders and maybe a lot others. I did find a recent article on RLS that mentions hydration as one of the things that may help so it's something easy to try if you aren't already doing it.

Medical News Today Jan 2018 – Everything you need to know about restless legs syndrome:
https://www.medicalnewstoday.com/articles/7882.php

John

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@lknightb

I have it too. I take requip and sometime tramadol. If the legs get really bad I have to get on my exercise bike for at least 10 minutes. This really seems to help. The bike was the best thing I ever bought to help relieve the symptoms of this horrible syndrome.

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@lknightb I too love my recumbent bike. I generally do about 30 minutes, increasing the resistance and moving the seat closer, at the suggestion of my ortho after having my knee replaced. It has helped me so much.
JK

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@lknightb

I have it too. I take requip and sometime tramadol. If the legs get really bad I have to get on my exercise bike for at least 10 minutes. This really seems to help. The bike was the best thing I ever bought to help relieve the symptoms of this horrible syndrome.

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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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@lisalucier

Hi, @lknightb — that is very interesting about your bike routine that helps with your restless legs syndrome (RLS). I thought you might like to meet some others who have talked about Ropinirole (Requip), like @peggyj4411 @kyjeanne @beho @painwarrior @emilyanne @rabbit10 and @lynsorensen, so you can compare notes on using this medication for RLS. @johnbishop may also have some thoughts.

@lknightb — have you experienced any side effects from the Ropinirole (Requip)?

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No thank goodness.

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I just started drinking more water so we will see.

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