Patient Comments: Restless Leg Syndrome - Experience

Please describe your experience with restless leg syndrome.

Comment from: frustrated in Texas, 35-44 Female (Patient) Published: July 14

My restless leg syndrome (RLS) came on when I was pregnant with my second child. It has definitely gotten worse as time goes on, and now affects my arms as well. I can't take any over the counter medications that cause drowsiness (such as Benadryl), it just makes it worse. The only thing that seems to help is the hydrocodone I am on, for the fusions in my foot, and Ambien CR. It acts up during the day now, but really rears its head at night. It is frustrating because I can't exercise due to my severe arthritis. The best way I can describe it is that my muscles feel like they are being twisted... until finally I can't stand it anymore. Then I kick or punch to relieve the sensation for a few moments before it builds back up. I stay in constant motion when it is at its worst. This is a horrible disease.

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Comment from: raj, 35-44 Male (Patient) Published: June 04

I am 44 years old and fighting with this restless leg syndrome for last four years. It starts at night in my feet as soon as I go to bed and gradually increases. Even though I feel sleepy I cannot sleep after lying on bed and closing the eyes. I do not take any medicines. If I cannot sleep I get up and do stretching, massaging, walking for some time and sleep again. When I do regular exercise it helps me to sleep immediately on bed before it gets aggravated.

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Comment from: marbles, 55-64 Male (Patient) Published: March 18

Up until age 60 I had very good health, or so I thought. Then heart failure, COPD, restless leg syndrome (RLS), sleep apnea... beginning to sound like a Studebaker way past its prime. Never noticed the RLS until after my open-heart surgery to replace aortic valve and my convalescing. With a new awareness of my body's failings, I realized I had been having minor RLS symptoms for years (constant low-grade tingling), passing it off as fatigue. Now, seemingly, a switch had been levered which brought this affliction to my daily life. Still working on a fix that works for me.

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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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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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