1. < Sleep Health

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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Moderator
Lisa Lucier, Moderator | @lisalucier | Apr 20, 2018

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)?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Apr 20, 2018

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

REPLY
JK | @contentandwell | Apr 20, 2018
In reply to @lknightb "I have it too. I take requip and sometime tramadol. If the legs get really bad..." + (show)
@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.

Jump to this post

@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 | @lknightb | Apr 21, 2018
In reply to @lknightb "I have it too. I take requip and sometime tramadol. If the legs get really bad..." + (show)
@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.

Jump to this post

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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1 reply
lknightb | @lknightb | Apr 21, 2018
In reply to @lisalucier "Hi, @lknightb -- that is very interesting about your bike routine that helps with your restless..." + (show)
@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)?

Jump to this post

No thank goodness.

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lknightb | @lknightb | Apr 21, 2018

I just started drinking more water so we will see.

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barbarn | @barbarn | Apr 24, 2018
In reply to @vickiekay "Try drinking Tonic Water....my Mayo doctor suggested a "gin and tonicwithout the gin"! The quinine in..." + (show)
@vickiekay

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

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I've been doing tonic water (tho' I use the diet tonic) for years. Started it - well, started it because I like a vodka tonic in the evening - but the fact that it seemed to help leg and foot cramps was beneficial. Now, I include RLS in the benefits!!! it. does. seem. to . help.!!!!!

REPLY
barbarn | @barbarn | Apr 24, 2018
In reply to @briansr "Hot baths, ice packs sometimes, but gabapentin works the best on nervepain, esp nuopathy, and non..." + (show)
@briansr

Hot baths, ice packs sometimes, but gabapentin works the best on nerve<br>pain, esp nuopathy, and non narcotic.<br>

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well - a support group is for us to try to benefit from what someone else has found beneficial - what works for one may not always work for all!!!!

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barbarn | @barbarn | Apr 24, 2018
In reply to @jimbourg8 "I'm really glad Gaba works for you. Yes it helps me alot especially in the evening..." + (show)
@jimbourg8

I'm really glad Gaba works for you. Yes it helps me alot especially in the evening while I am watching TV or ready and sitting still. I have to ususaly take 2 , 300 mg tabs to help calm the restless nerves........doesnt completely go away but ...sure does help tolerate it ! It does help with sleep but I still have to take at least a 5 mg ambien to get me to sleep. I also alternate the Ambien with Klonopen to help me sleep . I have to carefully "balance" the intake as side effects of those meds...make one dizzy or balance problems from time to time. Each person has to learn how to regulate their doses as we all respond a bit differenty..........

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You know, Lynn, years ago I used to take sleep aids that contained benedryl - and finally decided the benedryl was actually "wiring" me! Learned to stay away from that stuff! We are all so different, my husbanc takes a benedryl at night for itching and sleeps like a baby!!!

REPLY
barbarn | @barbarn | Apr 24, 2018
In reply to @lisalucier "Hi, @lknightb -- that is very interesting about your bike routine that helps with your restless..." + (show)
@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)?

Jump to this post

Requip seems to make me sleepy - which is particularly nice at bedtime. I think it makes a huge difference in my RLS.

REPLY
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