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.

@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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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 .

Liked by barbarn

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@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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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

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.

Liked by barbarn

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@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

Liked by barbarn

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@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

Liked by barbarn

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@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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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.

Liked by barbarn

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@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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@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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@barbarn

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

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What you’re going through sounds miserable. I did try both Mirapex and Requip and they did help, for a time, until they led to augmentation, making the RLS worse. Best wishes to you and hoping your physician sorts it all out.

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@barbarn

@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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@barbarn just take onene when you have to drive

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@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 had the very same thing happen to me with Requip……isn’t it strange that after all that time it would stop being effective? Disappointing too as it worked well all that time. I stopped because I was needing to increase dosage every two weeks & would get sick & vomit, have a blasting headache, & be dizzy to the point passing out with each increase. By the time the side effects started to abate, it was time to increase the dosage again – and round and round it went. That’s when Mayo switched me to gabapentin which has proven to be somewhat effective but not entirely. Right now I am taking Neupro which is a transdermal patch, and so far it’s working pretty well. Problem is it’s quite expensive. It too is a Parkinson’s/RLS drug. Like @babarn above, I keep wondering if I can switch back to Requip some day or if it will forever be something that doesn’t work.

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@barbarn

@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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@barbarn: isn’t it miserable to be so tired & try to drive? Becomes easy to just drop to sleep, and that’s kind of scary. Good luck with future trips, and I hope you can sleep at least a few hours straight so you can get enough rest to drive.

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@lioness

@barbarn It's dill pickle juice as soon as they start I drink a couple of swallows Keep it around all the time hope you feel better new year,new you

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Hi; I've also used a spoonful of mustard that will immediately relief any cramps in your legs or hands..I've tried it and it worked for me.

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