Patient Comments: Restless Leg Syndrome - Experience

Please describe your experience with restless leg syndrome.

Comment from: Scott, 55-64 Male (Patient) Published: May 02

Three years after being diagnosed with diabetes, I experienced symptoms of RLS. I thought I was going crazy. It was really bad, day and night. First, I was prescribed Neurontin, which did nothing. I became suicidal. After trying everything prescribed, I started drinking myself to sleep. Finally I read that opiates work for some people. My doctor prescribed Oxycontin and it worked. After four months, he said he could no longer prescribe it. I have been on methadone for seven years and have not lost a night's sleep since. I know it was a drastic measure and decision, but it was that or death. Now I want to try Requip, but am afraid it will not do the job as well.

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Comment from: Helen, 55-64 Female (Patient) Published: April 22

I get restless legs whenever I relax. I have had it while getting my hair cut, getting a pedicure, and a massage. Also, while driving home from the grocery store, while at the movies, and at church. I have worn a hole in my sheets. I had it as a kid too. If I miss my meds, it is an hour and sometimes longer before I can get rid of it. It is a miserable condition.

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Comment from: Subgma, 55-64 Female (Patient) Published: April 05

I am in my early 60s and have severe restless leg syndrome (RLS). I've had fibromyalgia for years and don't really know if this is a symptom of fibromyalgia or actually RLS. I have it mainly during the daytime. I have so much pain in my legs and toes that I don't know what to do with myself. I'm on codeine contin for fibro, but thoroughly dislike the meds – they give me hot sweats so bad. I'm also taking extra-strength muscle relaxants, T3 pills, and have severe depression. I'm on a very high dose of an antidepressant.

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Published: July 08

I have had RLS for many years now and have tried many different drugs to help the symptoms. I now am on 4 mg of Requip and 36 mg of Neurontin a day. I also take 5 mg of Zanax at bedtime. It seems like nothing is really working for any length of time now. I don't know where else to turn as far as what else there is out there that I haven't tried.

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Published: July 08

I experience uncontrollable, extreme jerks in the legs. Usually it happens when I am driving, or at night in bed. I have pulled the car over several times it can become unsafe to drive. I hold the knee and squeeze it tight. Stretching my calves and hamstrings is the only thing that I have found that gives me relief. Sometimes I stretch for 10-20 minutes before I start feeling anything beginning to work. It comes and goes sporadically. I am 36 years old.

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Published: July 02

I am a 49 year old female and have suffered with RLS for several years. I tend to describe it as you would toothache but in your legs, it starts in my lower leg and rises to my hips as it worsens. I constantly toss and turn in bed with my legs hanging out the side, or anything to give some relief, flat on my back seems the best. I also suffer with it during the day if I sit for too long. The only relief is to walk about and move. I have started on Requip and as yet have found little relief but am only just building the dose up. I hope it works.

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Published: July 02

All of you get checked for Sleep Apnea. I was diagnosed with both RLS and Sleep Apnea. I hope this information helps everyone with Restless Leg Syndrome. You are at risk of dying in your sleep; if, you have sleep apnea. I stopped breathing 24 times per hour and my blood oxygen was 79 percent while sleeping at the Sleep Lab. Do your self and family a favor and get checked. I am on a CPAP machine while sleeping or napping. I was put on Oxygen until I was diagnosed. To this day, I am in disbelief. Good luck to all and I wish you all live a long and peaceful life.

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Published: July 01

I'm 43 years old and have had RLS for years. I can remember as a little girl riding in the car and have what I called at the time "antsy leg". It seems to be getting worse now that I get older and especially at bedtime. It's like I'm on the verge of getting to sleep and that uncontrollable sensation to move my leg overcomes me and the only relief I have is to get up and move to the couch so that my husband can get a good night sleep. I've also had RLS attacks while driving and of course it's in my right leg so you can only imagine what that's like. I haven't wanted to take medication but it seems to be in my near future unless I find other relief.

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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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