Patient Comments: Restless Leg Syndrome - Experience

Please describe your experience with restless leg syndrome.

Comment from: Dede, 55-64 Female (Caregiver) Published: April 11

I am a nurse and I experience restless leg syndrome from time to time. I could swear that the incidence and severity of symptoms was increased by taking glucosamine for my joints.

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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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Comment from: sandchell, 45-54 Female (Patient) Published: January 13

After suffering for years with RLS (restless leg syndrome), only because I had hurt my back and was prescribed an opiate did I find any relief. And because opiates are expensive I chose methadone. I have a severe case of RLS and was shocked to find that I now have RLS affecting the entire right side of my body.

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Comment from: Lynn, 45-54 Female (Patient) Published: October 18

I'm 52,and have had restless leg syndrome (RLS) for approximately 10 years. My RLS feels like my legs want to dance, but my mind just wants to sleep. It kind of feels like I have a tens machine on my legs sending out electrical impulses constantly. I have been using Sinemet which as a rule works really great. However, I recently had a shoulder replacement, and a fusion in my foot, so a lot of time resting making it 70% worse than usual. Needless to say I'm looking forward to getting full mobility back asap!

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Published: June 23

I have always heard of RLS in terms of jumpy, jerky legs. In my experience, I would describe it as if my veins/nerves were being filled with a chemical, or an extreme caffeine high. I get momentary relief by squeezing my muscles, but it comes back immediately. The best relief comes from exercise. I get up and do 50 jumping jacks. The sensation comes while in bed or sitting in a chair and affects my legs and arms. I regularly exercise, weigh 150 and consume almost no caffeine. It began last year or so and seems to be getting worse. I am 63.

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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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