Patient Comments: Restless Leg Syndrome - Experience

Please describe your experience with restless leg syndrome.

Comment from: Restless in CA, 55-64 (Patient) Published: March 07

I have had RLS (restless leg syndrome) for about 20 years and it does seem to be getting worse. I am up to 2 pills a night. During the last decade I have notice that uric acid might have something to do with it. After about 2 hours of my legs spasming out, I go and void all the urine out of my system. I have not read any correlation about RLS and uric acid but I believe there is something to it. So, the next time (which will be tonight for many of you), sit on the throne, relax, read and void every drop. I hope this helps!

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Comment from: Recycledritz, 65-74 Female (Patient) Published: February 10

I have fibromyalgia, chronic fatigue, reflex sympathetic dystrophy, migraines, restless leg syndrome and a very significant back pain problem. Of all these, RLS is by far the worst thing I deal with at night; it is pure torture. I was on Mirapex for 6 to 7 years and it worked great, then suddenly just quit working. I was prescribed Requip that worked for a few weeks then stopped working. I was then prescribed Neupro patches and I would have just as much results with a Band-Aid. I started taking supplements of magnesium, potassium, vitamin D and a very low dose of iron (on my own after research) and saw some relief for a short while. I continue with them even though I get no RLS benefit anymore. I really wish science would put more effort into finding cause and cure for this. One might say "but it's not life threatening"; unfortunately, that's true.

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Comment from: JJG, 65-74 Female (Patient) Published: February 07

I have had RLS (restless leg syndrome) for as far back as I can remember. All four of my children have it too. When they were small we referred to it as "crawly legs". It wasn't until about ten years ago that I discovered there was treatment available. I take pramipexole and it has made a huge difference. Prior to treatment I had trouble sitting still long enough to watch a movie. Road trips were miserable, I would literally put my feet on the dashboard to try and get relief (fortunately I'm very limber!) I constantly had to keep my legs moving! I truly empathize with others dealing with this problem and encourage you to seek treatment. Also, exercise, especially walking, helps a lot.

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Comment from: Lili, 35-44 Female (Patient) Published: February 06

The first time I experienced RLS (restless leg syndrome) was in an airplane at the age of 18 years. After that, I experienced RLS only while traveling in an airplane. I thought it was associated to the high pressure. At the age of 29 years, I had my 1st pregnancy and since then I constantly suffered RLS at night, regardless of how tired I am. I exercise regularly and I consider myself a healthy person. I didn't want to take any medications due to secondary effects and dependency. However what I found useful and helps me to get back to bed and sleep is several repetitions of exercises that get your legs tired, for example, I would make up to 80 repeats of lifting myself up (stepping only with my toes/heels in the air) and down (heels touch the ground). Once I feel the burn on my calves then I know my legs are tired and the sensation goes away. I also make squats or just lift one of my knee up to me waistline and down to touch the ground with my foot, also up to 80 repeats or until my legs start shaking. That has worked for me so far.

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Comment from: sickandtired, 65-74 Male (Patient) Published: January 29

I am a retired male 69 years old and have had this RLS (restless leg syndrome) problem for 10 years. But for 9 and 1/2 years I was misdiagnosed as having severe anxiety. I am a former drug abuser/addict. The RLS symptoms are very much like withdrawal from opiates. The doctors thought that I was seeing didn't see the symptoms in the daytime and thought that the nighttime symptoms was anxiety caused from drug abuse. Amazingly certain antidepressants worked, but only temporarily. Depakote, trazodone, Paxil. Today I'm on a Neupro transdermal patch. It stops symptoms most of the time, but I don't get much sleep. Sleep medicines like Restoril, Ambien, trazodone etc. have no effect. They slow me down but that's all. I hate it when somebody says "nobody ever died from no sleep" I do know if I take hydrocodone with this medicine the symptoms are relieved but I don't need another nightmare.

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Comment from: Mommasluggo, 35-44 Female (Patient) Published: December 30

I have had RLS (restless leg syndrome) since I was little. I always had to shake my leg. For the longest time it was only in my right leg, but about 3 years ago it was in both legs, the urge to constantly stretch them or shake them. Then my feet would get hot. Two years ago it started in my arms, luckily that only happens occasionally. But my legs are constant and now they will jerk involuntarily. I am on 3 mg Requip, I try to only take half because they make me nauseous in the morning. But if not for the Requip I would probably go insane because I absolutely cannot sleep without it. It's a lifesaver.

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Patient Comments

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Restless Leg Syndrome - Treatments Question: What method did you find most effective in treating your restless leg syndrome?
Restless Leg Syndrome - Symptoms Question: What symptoms did you experience with your restless leg syndrome (RLS)?
Restless Leg Syndrome - Remedies and Alternative Treatments Question: Please share remedies and alternative treatments you've tried to manage restless leg syndrome.

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