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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lioness | @lioness | Jan 17, 2019
In reply to @suecreader "@lioness: Thank you so much for this information. Your response and feedback came at such a..." + (show)
@suecreader

@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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@suecreader yes so many drugs can help with different problems look up Drugs.com it will tell you all about different drugs I use this site alot Not only is it for restless legs but relaxes the muscles I can fell it relaxing them when tense .I like this drug

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rensacb | @rensacb | Jan 23, 2019

I too have RLS. I take mirapex.075 mg every evening along with Gabapentin 300 mg. This combination works well for me. Been taking these meds for almost 25 yrs. RLS is maddening .

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lioness | @lioness | Jan 23, 2019

@rensacb Never thought of taking in morning Dr told me take at night I,ll have to talk to Dr thanks

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barbarn | @barbarn | Jan 23, 2019

In late afternoon (about 5 pm) I take 1/2 a Mirapex 0.25, gabapentin 100 mg, hoping to avoid RLS when I sit down to watch TV after dinner. Mostly that works, but not always. The problem is -- that Mirapex makes me so sleepy! Or maybe it's the combination of gabapentin and mirapex? Repeat that at bedtime, only increase the mirapex to 0.50 and I sleep so well! But that seems to carry over to next day - when I fall asleep any time of day!!! (Even after TWO Starbucks!!!!) Dr appt tomorrow - maybe I can switch back to Requip? Any other ideas?

REPLY
3 replies
rensacb | @rensacb | Jan 23, 2019
In reply to @barbarn "In late afternoon (about 5 pm) I take 1/2 a Mirapex 0.25, gabapentin 100 mg, hoping..." + (show)
@barbarn

In late afternoon (about 5 pm) I take 1/2 a Mirapex 0.25, gabapentin 100 mg, hoping to avoid RLS when I sit down to watch TV after dinner. Mostly that works, but not always. The problem is -- that Mirapex makes me so sleepy! Or maybe it's the combination of gabapentin and mirapex? Repeat that at bedtime, only increase the mirapex to 0.50 and I sleep so well! But that seems to carry over to next day - when I fall asleep any time of day!!! (Even after TWO Starbucks!!!!) Dr appt tomorrow - maybe I can switch back to Requip? Any other ideas?

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I do have the problem with drowsiness into the afternoon. I took requip for the first 10 years or so and then it just quit working. The mirapex does the job. My RLS is so bad that side effect is ok with me.

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2 replies
lioness | @lioness | Jan 23, 2019
In reply to @barbarn "In late afternoon (about 5 pm) I take 1/2 a Mirapex 0.25, gabapentin 100 mg, hoping..." + (show)
@barbarn

In late afternoon (about 5 pm) I take 1/2 a Mirapex 0.25, gabapentin 100 mg, hoping to avoid RLS when I sit down to watch TV after dinner. Mostly that works, but not always. The problem is -- that Mirapex makes me so sleepy! Or maybe it's the combination of gabapentin and mirapex? Repeat that at bedtime, only increase the mirapex to 0.50 and I sleep so well! But that seems to carry over to next day - when I fall asleep any time of day!!! (Even after TWO Starbucks!!!!) Dr appt tomorrow - maybe I can switch back to Requip? Any other ideas?

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@barbarn I only take 0.25 at night puts me to sleep maybe taking g both is to much at a time

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1 reply
lioness | @lioness | Jan 23, 2019
In reply to @rensacb "I do have the problem with drowsiness into the afternoon. I took requip for the first..." + (show)
@rensacb

I do have the problem with drowsiness into the afternoon. I took requip for the first 10 years or so and then it just quit working. The mirapex does the job. My RLS is so bad that side effect is ok with me.

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@rensacb I take it just before bedtime Miripex0 25 I do t have any drowsy,s next day

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susan2018 | @susan2018 | Jan 23, 2019
In reply to @barbarn "In late afternoon (about 5 pm) I take 1/2 a Mirapex 0.25, gabapentin 100 mg, hoping..." + (show)
@barbarn

In late afternoon (about 5 pm) I take 1/2 a Mirapex 0.25, gabapentin 100 mg, hoping to avoid RLS when I sit down to watch TV after dinner. Mostly that works, but not always. The problem is -- that Mirapex makes me so sleepy! Or maybe it's the combination of gabapentin and mirapex? Repeat that at bedtime, only increase the mirapex to 0.50 and I sleep so well! But that seems to carry over to next day - when I fall asleep any time of day!!! (Even after TWO Starbucks!!!!) Dr appt tomorrow - maybe I can switch back to Requip? Any other ideas?

Jump to this post

My physician specifically asked me about my response to gabapentin as to whether I felt drowsy or found it difficult to get going in the morning. In my case, it feels really good to be able to sleep most nights , midnight to 7am, I feel ready to get up most mornings just before my alarm goes off and I don’t feel draggy the next morning.

REPLY
1 reply
barbarn | @barbarn | Jan 23, 2019
In reply to @lioness "@barbarn I only take 0.25 at night puts me to sleep maybe taking g both is..." + (show)
@lioness

@barbarn I only take 0.25 at night puts me to sleep maybe taking g both is to much at a time

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@lioness and @rensacb - thanks for your response - hope dr can help tomorrow. Times I need to drive husband 80 miles to dr and find I am too sleepy to do it! Either way - too much Mirapex or lack of good night's sleep from RLS - too sleepy to drive!!!

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2 replies
barbarn | @barbarn | Jan 23, 2019
In reply to @susan2018 "My physician specifically asked me about my response to gabapentin as to whether I felt drowsy..." + (show)
@susan2018

My physician specifically asked me about my response to gabapentin as to whether I felt drowsy or found it difficult to get going in the morning. In my case, it feels really good to be able to sleep most nights , midnight to 7am, I feel ready to get up most mornings just before my alarm goes off and I don’t feel draggy the next morning.

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@susan2018 - maybe I should try to omit the bedtime gabapentin... Agreed - sleeping a few hours straight makes a huge difference.

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