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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tarawavet64 | @tarawavet64 | Aug 2, 2021
In reply to @susanelaine "I tried alternating Mirapex and REquip when one augmented and that worked for a while but..." + (show)
@susanelaine

I tried alternating Mirapex and REquip when one augmented and that worked for a while but since they are both the same class of med that doesn't work for me anymore. MIrapex works great for me until it augments and then I have to take what my neuro doc called a "drug holiday" when I really don't sleep at all. I take this holiday for at least 3 weeks (by then I'm a total wreck) and then can go back on the Pramipexole for 2-3 months until it all starts again. Have tried Neupro patch, carbadopa/levidopa, Lyrica, gabapentin but nothing works. I get a little sleep with oxycodone but have trouble getting it prescribed. RLS is ruining my life as I have to plan these "holidays" when nothing else is going on in my life - can't read, can't concentrate on preparing lectures, can't knit or even spend time with friends. As other people have said, I dread going to bed and having my legs jump!

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When you say your "legs jump", is that a totally involuntary twitch?

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susanelaine | @susanelaine | Aug 3, 2021
In reply to @tarawavet64 "When you say your "legs jump", is that a totally involuntary twitch?" + (show)
@tarawavet64

When you say your "legs jump", is that a totally involuntary twitch?

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sometimes it's totally involuntary and sometimes I move my legs when I can't stand it any longer.

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1 reply
stammfam | @stammfam | Aug 3, 2021

Is it true that if you have fusion surgery done on your lumbar spine that, most likely, you will need additional fusion surgery on the spine?

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1 reply
tarawavet64 | @tarawavet64 | Aug 3, 2021
In reply to @susanelaine "sometimes it's totally involuntary and sometimes I move my legs when I can't stand it any..." + (show)
@susanelaine

sometimes it's totally involuntary and sometimes I move my legs when I can't stand it any longer.

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With me, my leg twitches are totally involuntary. Like an electrical shock that will sometimes be so strong it will contract and bring my knee up. You should be able to find my first post and read about what I've found out and what drugs I take to battle it. The drug regimen may work for you also and you shouldn't have to worry about augmentation. Granted the ropinirole is in that category but at 3 mg, it has yet to rear its ugly head with me as of yet and I've been taking it now for almost 2 years.

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1 reply
Amanda Roe | @amandajro | Aug 4, 2021
In reply to @stammfam "Is it true that if you have fusion surgery done on your lumbar spine that, most..." + (show)
@stammfam

Is it true that if you have fusion surgery done on your lumbar spine that, most likely, you will need additional fusion surgery on the spine?

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Hello @stammfam and welcome to Mayo Clinic Connect. I would like to invite you to ask your question in the following discussion on spine fusion to better connect with members who can share information with you.

- Chronic Pain and Spinal Fusion:
https://connect.mayoclinic.org/discussion/chronic-pain-and-spinal-fusion/?pg=15#chv4-comment-stream-header

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susanelaine | @susanelaine | Aug 4, 2021
In reply to @tarawavet64 "With me, my leg twitches are totally involuntary. Like an electrical shock that will sometimes be..." + (show)
@tarawavet64

With me, my leg twitches are totally involuntary. Like an electrical shock that will sometimes be so strong it will contract and bring my knee up. You should be able to find my first post and read about what I've found out and what drugs I take to battle it. The drug regimen may work for you also and you shouldn't have to worry about augmentation. Granted the ropinirole is in that category but at 3 mg, it has yet to rear its ugly head with me as of yet and I've been taking it now for almost 2 years.

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I can't find your earlier post. What is your drug regime for RLS?

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 4, 2021
In reply to @susanelaine "I can't find your earlier post. What is your drug regime for RLS?" + (show)
@susanelaine

I can't find your earlier post. What is your drug regime for RLS?

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@susanelaine - Here is the first post by @tarawavet64 that I think describes the drug regime -- https://connect.mayoclinic.org/comment/611870/

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zailey | @zailey | Sep 13, 2021
In reply to @pcka "I have had severe restless leg syndrome for 30 plus years. I’m taking Parkinson’s pills and..." + (show)
@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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@pcka I also have had restless leg for over 30 yr and I also take parkinson med< Pramipexol 2 mg every evening. The Pramipexol helped when I first started it and still helps some but not as much as it did in the beginning. Some nights I have RLS so bad that I want to scream and the only relief I can get is to walk but as soon as I sit, it starts again. When my feet and legs are already on fire from neuropathy and the RLS sits in, I just want to die, its bad, really bad.

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zailey | @zailey | Sep 13, 2021

I have no signs of Parkinson , but when you read the med information on THE PRAMIPEXOLE, it states that Pramipexole is also given for RLS. Also, I always thought it had something to do with the nerves but my PCP said no, it comes from brain. Mine started when I was early 20's but I didn't know what it was and it has gotten worse with age, I just turned a young 70 yr old.

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